Art Accessibility for Blind and Visually Impaired Teenagers and College-Age Adults in Utah

Through qualitative research methods, data was collected regarding blind and visually impaired teenagers (13-17) and college-age adults (18-23) to determine their definitions of art and to understand their ability to access and participate in the arts in Utah. Two participants outside of these age ranges were also included in the research data due to challenges with recruitment. Data was collected from eight participants through one-on-one, semi-structured interviews. Data was also collected and analyzed regarding Utah arts organization's current accommodations and types of accessibility. The research showed that the blind and visually impaired participants in my study conceptualized and accessed the arts in different ways dependent on their age and level of independence. Findings indicate that there is a disconnect between art organizations and blind and visually impaired individuals, especially in regard to forms of accessibility and accommodation. The implications of these findings suggest that more work could be done regarding accessibility for blind and visually impaired individuals who wish to engage with the arts. Recommendations for arts organizations are included in the appendices.

ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS Art Accessibility for Blind and Visually Impaired Teenagers and College-Age Adults in Utah Racquel Cornali Westminster College A thesis submitted in partial fulfillment of the requirement for the degree of Master of Arts in Community Leadership Westminster College Salt Lake City, Utah April 2017 1 ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS Dedication This project is dedicated to: Anyone who connects with the arts, or wishes to start a connection. Anyone who feels like they don't belong. You do. Anyone who is scared to step outside their comfort zone. You can do it. Anyone who thinks that having a disability means you can't live a meaningful life. You can. Anyone who wonders what the world would be like without the arts. It would be a dreadful place. The arts sustain us, forever and always. 2 ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 3 Acknowledgements This experience was one of the most challenging I have faced so far in my life. I would not have survived had it not been for the support and encouragement of so many people. To my family, thank you for listening to me gripe, and for understanding that I was ornery for a reason. Thank you for reminding me that I am doing something important. I am grateful for each of you-today, and every day. To my friends, thank you for not abandoning me. I am thankful you are still here, even though I have been away for what felt like ages, but was really only a few months. To my colleagues, thank you for helping me get through the work day when I was feeling run down. I am grateful to work with such amazing people. To my participants, thank you for being so honest with me. I hope you learned as much about yourselves as I learned about you. Thank you for understanding I was nervous, yet eager to learn from you. I hope I am able to make a difference. To Jamie and Shelley, thank you for your guidance and your patience throughout this process. We really could not do this without you. Literally, and figuratively. To Elise, your constant guidance and encouragement was just what I needed. You were so insightful, and I am so appreciative for all the suggestions you made. You are an amazing asset to the arts community. Thank you to everyone who I connected with throughout this project. It may sound cliché, but I have learned something from each and every person I've met along the way. I am carrying with me the remnants of your thoughts and ideas. Thank you to my father. I am who I am because of you. I love you more than you will ever know. Lastly, I would like to acknowledge this "pale blue dot" wherein we exist. At the end of the day, I realized this project was not my whole world, it was just one small piece of my life. I am thankful for the opportunity to have engaged in this work. I hope that one day, my contributions make a difference, even if it's for just one person. ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 4 Abstract Through qualitative research methods, data was collected regarding blind and visually impaired teenagers (13-17) and college-age adults (18-23) to determine their definitions of art and to understand their ability to access and participate in the arts in Utah. Two participants outside of these age ranges were also included in the research data due to challenges with recruitment. Data was collected from eight participants through one-on-one, semi-structured interviews. Data was also collected and analyzed regarding Utah arts organization's current accommodations and types of accessibility. The research showed that the blind and visually impaired participants in my study conceptualized and accessed the arts in different ways dependent on their age and level of independence. Findings indicate that there is a disconnect between art organizations and blind and visually impaired individuals, especially in regard to forms of accessibility and accommodation. The implications of these findings suggest that more work could be done regarding accessibility for blind and visually impaired individuals who wish to engage with the arts. Recommendations for arts organizations are included in the appendices. ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 5 Table of Contents Chapter I: Art Should Be Accessible to Everyone ......................................................................9 Significance of Study ..................................................................................................................10 Root Causes ..........................................................................................................................11 Disability ...............................................................................................................................11 Art Education ........................................................................................................................12 Exclusion...............................................................................................................................13 Community Partner .....................................................................................................................14 Limitations and Delimitations.....................................................................................................15 Chapter II: Literature Review ....................................................................................................17 Definition of Blindness ...............................................................................................................17 Disability Rights .........................................................................................................................19 Disability Arts .......................................................................................................................22 Active and Passive Exclusion .....................................................................................................23 Current forms of Art Access .......................................................................................................23 Art Education and Access .....................................................................................................24 Music.....................................................................................................................................25 Museums ...............................................................................................................................26 Theatre and Opera Performances ..........................................................................................28 Lifestyles of Blind and Visually Impaired Youth .......................................................................29 Leisure Activities ..................................................................................................................29 Social Skills ..........................................................................................................................30 Internet Access and Use ........................................................................................................32 Family Life............................................................................................................................33 Gaps in the Literature..................................................................................................................35 Chapter III: Research Methods ..................................................................................................37 Access to Population and Recruitment .......................................................................................37 ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 6 Data Collection ...........................................................................................................................41 Interviews ..............................................................................................................................41 Audio Recording ...................................................................................................................43 Grant Application Responses ................................................................................................43 Research Limitations ..................................................................................................................44 Ethical Concerns .........................................................................................................................45 Data Analysis ..............................................................................................................................47 Data Accounting Sheets ........................................................................................................47 Coding ...................................................................................................................................47 Validity of Assertions ...........................................................................................................49 Researcher Reflexivity ..........................................................................................................49 Member Checking.................................................................................................................50 Chapter IV: Findings and Analysis ............................................................................................52 Accessibility in Utah ...................................................................................................................53 Examples of Passive and Active Exclusion ..........................................................................53 Perceptions of Accessibility and Age ...................................................................................56 Ability to Travel and Engage with an Arts Experience ........................................................57 Experiencing Art with Friends and Family...........................................................................59 Visual Impairment and Driving ............................................................................................59 Lack of Knowledge and Awareness around Accessibility .........................................................60 Access and Accommodations ...............................................................................................61 Societal Barriers ....................................................................................................................63 Current Forms of Accessibility and Accommodations in Utah ..................................................65 Arts Organizations' Perception of Accessibility...................................................................66 Lack of Accommodation for Blind and Visually Impaired Patrons .....................................67 Assistive Technology and the Arts .............................................................................................69 Braille ...................................................................................................................................69 Braille Display and Screen Reader .......................................................................................70 ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 7 Virtual Reality.......................................................................................................................71 Assistive Technology and School .........................................................................................71 Conceptualization of Art .............................................................................................................72 Definition of Art ...................................................................................................................72 Types of Art Engagement ....................................................................................................74 Chapter V: Recommendations....................................................................................................77 Implications.................................................................................................................................77 Recommendations .......................................................................................................................80 Limitations ..................................................................................................................................83 Recruitment ...........................................................................................................................83 Use of Art Rhetoric ...............................................................................................................84 Future Research ..........................................................................................................................85 Learning Objectives ....................................................................................................................87 Community Organizing ........................................................................................................87 Communication Skills...........................................................................................................88 Collaboration.........................................................................................................................89 Personal Reflection .....................................................................................................................90 References .....................................................................................................................................95 Appendix A .................................................................................................................................101 Appendix B .................................................................................................................................102 Appendix C .................................................................................................................................103 Appendix D .................................................................................................................................104 Appendix E .................................................................................................................................105 Appendix F .................................................................................................................................106 Appendix G .................................................................................................................................107 Appendix H .................................................................................................................................108 Appendix I ..................................................................................................................................109 Appendix J ..................................................................................................................................111 ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 8 Appendix K .................................................................................................................................113 Appendix L .................................................................................................................................114 ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 9 Chapter I: Art Should Be Accessible to Everyone Introduction For those who live or work in the arts, it would be an understatement to say that the arts are integral to our sense of being. We have learned to see the world through a particular lens- one that allows us to find deeper meaning, deeper connections, and deeper engagement with the world around us. But what does it mean to "see the world?" Does this language only pertain to sighted-people, meaning that visually-impaired individuals cannot "see the world" through the same lenses? Everyone should have the opportunity to access the arts in whatever fashion they choose to do so, and should feel welcomed and encouraged to participate in art offerings. When we talk about arts participation such as theatre, dance, music, or visual arts, we need to be thoughtful about who can access our programs and how, ensuring that all members of a community are accessing art if they have the desire to (De Coster & Loots, 2004). One community that is often marginalized in this respect is the disabled community, and for the purposes of this thesis, my focus will be on the blind and visually impaired community. I have worked in the arts field for a decade now, first at a local arts agency in New York City and currently, at the State Arts Council in Utah. I have worked with individual artists, groups, arts communities and collectives, and non-profit arts organizations and have learned a great deal about arts organization programming and management. Through my work in the arts field, I have found that many organizations, especially small non-profits, struggle with creating more accessible and inclusive arts programming beyond the necessary Americans with Disabilities Act (ADA) policies. Through this research, I intend to increase awareness of arts accessibility and create a space for dialogue between organizations and the blind and visually impaired community in Utah. In order to be truly intentional about inclusivity, we need to extend a hand ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 10 and understand the issues that exist, including exploring how members of the blind and visually impaired community are feeling, how they would like to be more involved, and how they would like to see access broadened for them. Significance of Study This topic is of personal importance because the arts have always been an integral part of my life. The arts always gave me a space to be myself, to feel confident and accepted, to learn more about myself and those around me-and it taught me how to create connections when I felt stranded. My hope is for everyone to have this type of connection with the arts-in whatever form they choose to interact with it. Through this project, I have learned more about the blind and visually impaired community and their interest in, and ability, to access the arts and arts programming throughout Utah. I struggled to work through my assumptions of how the blind and visually impaired community thought about, engaged with, and accessed art currently. I explored how individuals within the blind and visually impaired community conceptualized the arts while examining what they thought arts programming and access should/could look like now, and in the near-future. I embarked on this research because I believe that the arts are a public good that should be accessed by everyone. I believe that even just a marginal increase in awareness of this issue could create small ripple effects of change throughout the arts community in this state. In order to keep my research focused, I chose to limit my participants to the blind and visually impaired community. I could have included other disabled communities which would have yielded more extensive data, but that could have been unwieldy and I needed to be cognizant of time constraints around this project. ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 11 For my research, I decided to work with teenagers ages 13-17 and college-age adults ages 18-23, however due to recruiting challenges I included two participants over this age range. I believed working with individuals in these age ranges would yield the most interesting data. I was interested in exploring how they understood the arts and whether they participated in or created art. I believed that individuals within this age range had more access to creative pursuits, especially social events in-and outside-of school. In order to reinforce the value the arts have within society, it is important to explore how marginalized communities conceptualize the arts and its significance in their lives. My main research question was: how do blind and visually impaired teenagers (ages 13-17) and collegeage adults (ages 18-23) come to understand and engage in the arts? As a sub-question, I also wanted to explore the role arts played in their lives, and how they engaged with arts programming in Utah. Through this research, I explored how this data could inform arts organizations to create more inclusive and accessible programming. Root Causes As I begin to address this inquiry, it is important to discuss the major concepts that undergird art accessibility. I will address several root causes that discuss these concepts: 1) Disability, 2) Art Education, and 3) Exclusion. Disability. People with disabilities have been seen as "less than" and "inferior" members of society because they are different than the majority of citizens (Hayhoe, 2014). Most arts organizations and institutions are compliant with ADA Law Section 504, which states: No qualified individual with a disability in the United States shall be excluded from, denied the benefits of, or be subjected to discrimination under any program or activity that either receives Federal financial assistance or is conducted by any Executive agency ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 12 or the United States Postal Service (United States Department of Justice Civil Rights Division, April 9, 2012). Organizations do what they can to provide "reasonable accommodations" to their venue or their programming, however, I believe that many organizations do not have more accessible programming because it is perceived as complicated or expensive. This belief stems from anecdotes I've heard from people in the community and from my experience speaking with arts organizations about the types of ADA accessibility they have for all of their patrons. It should be known that for organizations who are interested in making their offerings more inclusive, there are a number of online resources that can help provide thoughtful inclusion strategies. Organizations like the Kennedy Center, and the National Endowment for the Arts, all provide brochures or tip-sheets around this topic for those interested in making their venue or event more accessible. I have included a recommendation "one-sheet" with quick and easy tips to assess and increase accessibility for arts organizations in Appendix K. Art Education. Art education allows students to learn about creative expression with guidance from an art educator. Since the majority of students in public schools are not disabled, art teachers and arts curriculum are not equipped with the knowledge or resources to work with different populations of students (Coleman, Cramer, Park, & Bell, 2015). According to the research done by Coleman et al., (2015), art educators are no more prepared to work with students with various disabilities than they were 20 years ago. This creates an inequity between how students with and without disabilities are engaged in art education experiences. The same study demonstrated that the majority of art educators surveyed did not feel adequately trained through college or other courses to work with students with disabilities, but that they were ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 13 willing to learn and were interested in understanding how assistive technology could help make arts education more inclusive for students with disabilities (Coleman et al., 2015). This research suggests that although art education is important, many art educators do not feel comfortable teaching students with disabilities because they lack the knowledge and training to do so. If we believe that the arts should be accessible to everyone, how can students with disabilities have positive experiences with art making when art educators are unfamiliar with accommodations or have no experience working with disabled individuals? The better prepared the teachers are, the greater the opportunity for a student with disabilities to have a rich arts education experience. By understanding what kinds of art blind and visually impaired students are participating in, colleges and other organizations can better understand what kinds of training need to be done, and can also work with disabled students to gather feedback on what would be most helpful for them. Exclusion. Members of the differently-abled community are often excluded from societal interactions either through active or passive exclusion which will be explained in greater detail in Chapter II (Hayhoe, 2014). Through my research, I have uncovered the types of events and venues that blind and visually impaired teenagers and college-age adults are accessing. I also gained a deeper understanding of what those experiences were like for the individuals I interviewed, including what was accessible and what was least accessible. By gathering this feedback, I have provided some easy recommendations that can help arts organizations understand their current levels of accessibility while taking small steps to increasing accessibility in the future for all patrons (see Appendix K). ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 14 Community Partner In order to do this research, I collaborated with a community partner that understood the population that I worked with. Since I was working within the arts field, I partnered with Art Access, a non-profit organization that works to bring the arts to all communities with the understanding that art should be accessible to everyone. According to their website: Art Access is a community-focused organization that strives to demonstrate that the arts are a universal vehicle for drawing out our similarities, celebrating our differences, and ultimately connecting us to each other. Through our philosophy of inclusion, we serve people of all ages, backgrounds, and abilities.[…] We are the only arts organization in Utah that focuses on serving individuals with disabilities. […] We serve a diverse population of adults and children with and without disabilities, as well as the elderly, youth-at-risk, refugees, the homeless, veterans, and other disenfranchised peoples. By engaging the community in educational and artful experiences through our galleries and programming, Art Access continues to play a significant role in helping to eliminate social barriers and create an inclusive world for everyone through art (Art Access, n.d.). In order to conduct my research, I connected with Arts Access and their network of community organizations, specifically organizations that work with blind and visually impaired individuals. Through Art Access I was able to make connections with several community organizations such as the American Federation for the Blind, the Utah Schools for the Deaf & Blind, the National Federation of the Blind, the Utah State Library for the Blind and Disabled, and the Moran Eye Center. ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 15 Limitations and Delimitations I decided to focus my research around blind and visually impaired teenagers and collegeage adults because I was interested in how this specific population understands and accesses the arts-especially since most art forms are visual in nature. I chose to keep the scope of this research rather narrow; including the deaf or other disabled populations would require more time and resources. I was interested in understanding how other marginalized populations access the arts, however, due to time constraints, I was unable to explore these interests. I conducted qualitative research through one-on-one, semi-structured interviews with blind and visually impaired individuals in Utah-more specifically, along the Wasatch Front geographic area. I worked to gain rapport with blind and visually impaired teenagers and college-age adults by talking with them and their parents about my project, my love of the arts, and my interest in making the arts more accessible in Utah. I shared these thoughts with my participants so that they would feel comfortable sharing with me their own thoughts, beliefs, and lived-experiences (Johnson, 2017). I used this research to inform arts organizations across the state on how to create more inclusive programming, or at the least, create awareness around this topic and create connections within the larger arts community in Utah. Conclusion In order to gain an understanding of the blind and visually impaired community, I chose to engage with the current literature around this topic, including blind and visually impaired individuals' access to the arts, their inclusion in leisure activities, analysis of lifestyles, and access to the internet, among other topics. It was important to understand how past and current researchers in this field have been exploring the topic of blind and visually impaired individuals and the arts. Although most of the literature around this topic was not tied specifically to blind ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 16 and visually impaired teenagers and college-age adult's understanding and access to the arts, there was a wide body of literature to explore. This exploration of the literature will take shape in Chapter II: Literature Review. ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 17 Chapter II: Literature Review I believe that engaging and participating in the arts is an opportunity all members of society should have regardless of background, abilities, and beliefs. However, I understand that not all groups and communities choose to access the arts for a myriad of reasons-physical barriers, socio-economic status, cultural beliefs, and even personal values and interests. Despite these barriers, I am still interested in expanding access to the arts so that all who wish to participate may do so. In an attempt to understand how people are currently accessing or not accessing the arts, I engaged in a form of Disability Studies-exploring how blind and visually impaired teenagers (ages 13-17) and college-age adults (ages 18-23) defined the arts, and how they engaged with and accessed arts programming throughout the State of Utah. I included two participants outside of these age ranges due to challenges with recruitment, one was over the age of 23 and the other was over the age of 40. They both brought valuable insight to my research. Disability Studies aims to bring awareness to individuals with disabilities while providing these same individuals the opportunity to create their own narratives about their identities and experiences (Rice, 2007). Individuals with disabilities often use the arts to create and share these narratives with their own, and other communities. Disability Studies are not limited to the arts, they can also encompass other humanities-based fields of study (Rice, 2007). Definition of Blindness According to the American Federation for the Blind (2015), "23.7 million adult Americans (or nearly 10% of all adult Americans) reported they either "have trouble" seeing, even when wearing glasses or contact lenses, or that they are blind or unable to see at all" (para. 3). For the purposes of this proposal, blind and visual impairment will be defined as: ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 18 Blindness is a severe vision impairment, not correctable by standard glasses, contact lenses, medicine, or surgery. It interferes with a person's ability to perform everyday activities. "Legal blindness" is defined as vision with best correction in the better eye worse than or equal to 20/200 or a visual field of less than 20 degrees in diameter. "Legal blindness" is significant in determining eligibility for disability benefits from the federal government, but it does not reflect the precise functional impairment and disability. Vision impairment (VI) is defined as having 20/40 or worse vision in the better eye even with eyeglasses (Centers for Disease Control and Prevention, February 8, 2011). This definition is significant because it explains the different types of visual impairments that exist and provides context for the various ways that blind and visually impaired individuals interact with the world around them based on their level of vision. An examination of peer reviewed journals found a variety of research regarding the types of art forms blind and visually impaired individuals participated in (Baker, 2014; DeCoster & Loots, 2004; Hayhoe, 2014; Hye Young et al., 2015). However, there was limited research regarding how teenagers and college-age adults conceptualized art, nor was there much qualitative research aimed at understanding how blind and visually impaired individuals felt about their ability to access or participate in the arts. A number of journals engaged with other foci around this topic including leisure activities (Jessup, Cornell, & Bundy, 2010), development of social skills, and internet use (Wolffe & Sacks, 1997; Zebehazy & Smith, 2011). I could not find literature that specifically explored blind and visually impaired teenagers and college-age adult's interest in accessing arts programming or their experience attending art events or creating art, aside from the large body of research around museum access for the blind and visually impaired. This particular topic yielded a large amount of research, but I was more interested in ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 19 exploring arts accessibility more generally, and especially in regard to community-based arts experiences like fairs and festivals. In this literature review, I examined the current literature around this topic and expanded upon how my research added a new perspective to this important conversation. Disability Rights The Americans with Disabilities Act (ADA) was created in the 1990's and was an anchor for the Disability Rights Movement. The ADA was based on the Rehabilitation Act that was created in the 1970's, and was modeled after the Civil Rights Act of 1964 (Lewis, 2016). The ADA grants certain protections for individuals with physical or mental disabilities in two key areas: 1) Employment Discrimination, and 2) Physical accommodations for public service, transportation, and buildings (Lewis, 2016). The ADA defines disability as "with respect to an individual, A. a physical or mental impairment that substantially limits one or more major life activities of such individual; B. a record of such an impairment; or C. being regarded as having such an impairment" (Ludwig, 2012, p.143). Although the ADA was created to protect individuals with disabilities, it has not alleviated the discrimination and exclusion that disabled individuals face. Marc Maurer (2012), author of the article "Creating Disability Rights: The Challenge for Blind Americans" for The Braille Monitor provides several examples, some rather major, to prove that there is, in fact, active discrimination being perpetuated by the states. Some of the examples he provided included inaccessibility of the Law School Admissions Test (LSAT), in which the Law School Admissions Council (LSAC) determined what types of technology blind students could use to apply, and noted that the LSAT was not accessible for blind people. Another such example described workplace and pay inequities for blind individuals. Maurer (2012) stated that the ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 20 unemployment rate for blind individuals was 70% and that blind individuals made less than minimum wage. Many blind individuals in the workforce have felt this discrimination and have expressed their displeasure through folk songs, like those created by labor unions, which serve to give a voice to their oppression. Songs such as "Blind Workshop Blues" or "I've Been Working in the Workshop" were created to express their feelings towards working in sheltered workshops for the blind, which did not pay well and did not allow opportunities to advance to management positions (Maurer, 2012). In 2002, Chief Justice Rehnquist stated that Congress "has found an insufficient finding of a pattern of discrimination by the states" (Maurer, 2012, p. 14). The previous examples are contrary to the quote by Chief Justice Rehnquist as it is obvious there are still many instances of discrimination and exclusion of blind individuals within this country. The creation of the ADA did not automatically erase all these issues, nor did it solve the problems of prejudice and bias against people with disabilities. At the end of his article, Maurer (2012) sends a clear message to his readers: "Consequently, we must constantly demand that we be given the equal protection that our Constitution guarantees. In the long run such behavior will ensure that equality is ours" (p. 18). His call to action is clear-we must fight for the rights that have been imbued upon us. Just because these laws and regulations have been created does not mean they will automatically be enforced, they must be constantly invoked as a reminder to those who are not disabled that each person has equal access to better themselves and their lives. According to James L. Secor (2007), legal protections for the disabled play a major role in the success of disabled individuals, but society's attitudes towards exclusion, prejudice, and discrimination continue to disrupt any chance of normalcy for disabled individuals. He believed that society must work to reframe how it treats the disabled, especially since many accommodations created for disabled individuals have served to benefit able-bodied individuals ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 21 (e.g., automatic doors in public buildings and hand signals in sports). Although the ADA was created to protect and assist people with disabilities, the law is often made manifest through architectural and physical accommodations for accessibility in regard to buildings and event venues such as handicap ramps, elevators, and accessible water fountains. Erin Ludwig (2012) argued that the ADA should not just pertain to making a building accessible, and stated that growing research "shows that providing accessibility for those with disabilities goes beyond simply meeting the rules outlined by government" (p. 141). Her research aims to understand how people with disabilities face barriers to arts participation-not only through physical barriers, but through attitudinal barriers such as stigmatization from arts organizations and patrons. Her research involved several organizations in New Jersey who were working to ensure equitable access to the arts for members of various disability communities. What she found was that organization's perceptions of their levels of accessibility were different than the perceptions of disabled individuals who interacted with these organizations. The study showed that survey respondents, who were individuals with disabilities, felt that the selfstigmatization "was harder to overcome than physical or program related barriers" (Ludwig, 2012, p. 145). What is also interesting about this study is the idea that the survey respondents said they felt the arts organizations were welcoming and felt they tried to make accommodations for them, but that the respondents acknowledged that their disability made it "uncomfortable or difficult" to attend arts organizations (Ludwig, 2012, p. 145). She concludes that the idea of selfstigmatization by people with disabilities directly correlates with their participation in, and attendance of, arts organizations in their community. My research explored how blind and visually impaired individuals accessed and engaged with the arts, including their perceptions on accessibility and accommodations made by arts organizations in Utah. ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 22 Disability Arts Disability Arts is a current movement in which artists with disabilities create artwork that speaks to their experiences while challenging stereotypes, all guided by the idea of "Nothing about us without us"-the idea that any representation of a disabled community should include contributions and feedback from disabled individuals, rather than the idea of being spoken for (Kuppers, 2016). The Disability Arts movement empowers individuals with disabilities by focusing on their strengths and their contributions to the field rather than focusing on the things disabled individuals are unable to do. The discourse around this topic focuses on the opposition of ableism-"ableism, like other sociopolitical issues, references a combination of discrimination, power, and prejudice related to the cultural privileging of able-bodied people" (Eisenhauer, 2007, p. 8). Disability Arts embraces all of the lived experiences, emotions, and opinions embedded within the disabled individual and tasks disability artists with the charge of creating work that highlights their unique identity (Eisenhauer, 2007). Petra Kuppers (2016) discusses the idea of "Disability Arts 2.0"-a culture in which artists with disabilities are not just seen as Others or as Outsider Artists, but are brought into the fold of contemporary art with other artists to create a diverse and inclusive contemporary art community. Kuppers states, I wait for a sense that what is presented on the walls and onstage is not other to a nondisabled audience. I wait and work for a sense of a cultural framework that binds us-and that sees disabled people as producers, consumers, and critics of a shared art world (p. 96). Kuppers and Eisenhauer invite readers to open their minds to disability arts and artists in a deep and meaningful way. It is important to understand that disability art is not something that is "less ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 23 than" other contemporary art, rather, it should be seen as an equal, and asks us to reframe our stereotypes of what art should look like and who should create it. Active and Passive Exclusion Hayhoe (2014) describes the idea of passive and active exclusion for members of the blind and visually impaired communities in relation to their access of societal and cultural institutions and services. Active exclusion is defined as open discrimination and prejudice towards a population that works to purposefully exclude certain people from regular activities. Passive exclusion is when a society or culture excludes a certain group of people unintentionally, by not questioning systemic discriminatory practices or by not challenging stereotypes and by keeping things as the status quo (Hayhoe, 2014). Each of these types of exclusion frames the members of this community as outsiders-as Others. It also keeps these communities on the fringe, which means less attention is paid to their needs and desires to be included and welcomed in the larger community. In some ways, blind and visually impaired individuals exclude themselves from social experiences, as it is noted that they tend to spend their time in isolation and by choosing hobbies that are less social (Gerber & Kirchner, 2001). Some blind and visually impaired youth do not attend events because they feel limited by their disability to access certain event venues (Hye Young, Hyun Ju & Soo Ji, 2015). Current Forms of Art Access It is important to understand that blind and visually impaired individuals are currently accessing the arts, or creating their own art, in a myriad of ways. Since I believe the arts are something that should be accessible to all people, I wanted to understand how visual impairment affected how individuals accessed or participated in the arts. Although this review is not ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 24 exhaustive of every form of art that is being accessed, it is meant to give an overview of the various types of art forms that blind and visually impaired individuals are participating in. Art Education and Access. Art education classes give students the space to explore themselves and the world around them through the lens of aesthetics and creativity. However, many art educators are inexperienced working with disabilities, including students who are blind and visually disabled (DeCoster & Loots, 2004). This lack of training stems from the fact that educators are taught to work with majority populations, and are rarely given the opportunity to work with disabled children (Eisenhauer, 2007). However, art educators working with blind and visually impaired students have a number of resources available to them. Accommodations can be made for students who wish to participate in art education classes, including adapting art supplies, making work surfaces easier to work on, adjusting lighting and colors, and using technology to help students feel included and independent (Coleman & Cramer, 2015; Shih & Chao, 2010). Schools can also provide support by hiring artists with disabilities to teach disabled children, embodying the idea of "Nothing about us without us." Disability artists who are trained as art educators have the opportunity to give disabled children a role model and can use their agency to create art instruction and appreciation for disabled and able-bodied children alike (Eisenhauer, 2007). By giving students equitable access to the arts, disabled students strengthen their ability to conceptualize and create art, and they become more confident in their ability to create art on their own (Shih & Chao, 2010). In India, a local school works with blind and visually impaired youth to create operas that allow the students to learn through experiential pedagogy-or "learning by doing." The class is not focused on readings and assignments, but rather, they work in a more exploratory context allowing students and teachers to interact with each other through theatrical exercises that elicit ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 25 profound latent emotions, dreams, and values that can be used to create a performance. The students learn that they can be actors and dramatists without watching how someone is performing or acting, but by connecting with them through more intangible means (Saha & Gangopadhyay, 2007). The outcome of these classes are often extraordinary. The youth actors, teachers, and audience members are deeply affected and take the experience with them for the rest of their lives. Engaging in the arts helps blind and visually impaired students connect with themselves and the world around them, and gives them a space to express their emotions and lived experiences in a safe space (Saha & Gangopadhyay, 2007). Music. Blind and visually impaired individuals are often perceived as being naturally musically inclined due to their heightened sense of hearing (Baker, 2014). While there is no definitive evidence this is true, there are many blind and visually impaired people who participate in music as an art form, and receive a great deal of benefit and enjoyment from it (Baker, 2014; Hye Young et al., 2015). Blind and visually impaired adults who play an instrument say that they feel more connected and enjoy being able to perform and teach others, but that there are many barriers to learning music and it can be harder and more intensive for blind and visually impaired musicians to perform with an ensemble or as part of a large orchestra due to special accommodations (Baker, 2014). Another study found that blind and visually impaired adults enjoy listening to music not just for their own enjoyment, but for their chance to connect with other people and to feel a sense of belonging (Hye Young et al., 2015). It should also be noted that blind and visually impaired youth enjoy listening to music just as much as their sighted peers (Khadka, Ryan, Margrain, & Woodhouse, 2012). From these studies, it is clear that music plays an important role in the lives of blind and visually impaired individuals-both adults and youth. These studies show that music brings people together, which is an important point to remember ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 26 since many blind and visually impaired youth tend to engage in passive leisure activities that they can do in isolation (Wolffe & Sacks, 1997). I explore the topic of leisure activities and the blind in more detail later on in this chapter. Blind and visually impaired youth would like to interact with music in different ways such as attending live music events, but often feel limited by their disability, and they feel uncomfortable going to concerts alone without friends (Hye Young et al., 2015). Museums. A number of museums in the United States have made some accommodations for the blind and visually impaired population such as easily accessible restrooms, audio tours, touch tours, and other perceptual resources to familiarize individuals with the museum itself. These accommodations help people from this community, but accessibility and engagement could be deepened by eliciting feedback and direct input from members of the blind and visually impaired community regarding how museums can make their spaces more welcoming (Buyurgan, 2009). In Buyurgan's (2009) qualitative study, individuals who were blind or had low vision provided their experience in a Turkish museum wherein they described specific things they enjoyed, including being able to touch the objects and having a guide who explained the history and creation process for different exhibition pieces. They also commented on ways the museum could improve, such as providing a relief map of the museum, displaying larger text for exhibit pieces and catalogues, using contrasting colors on walls and floors, and creating more audio description for exhibits. This study aligns with the research I conducted insofar as it collected feedback from blind and visually impaired individuals regarding an arts experience, especially in regard to what these individuals liked and disliked and what they felt would make the experience even better. ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 27 Research by Hayhoe (2014) has shown that blind and visually impaired individuals enjoy going to museums not only to enjoy the art on display, but to feel a sense of belonging. Museums are often the collectors of a country's history and culture. Many museum patrons feel that visiting a museum endows them with a sense of "cultural capital"-knowledge that has a social and cultural value-through their interaction with an important place (Hayhoe, 2014). Blind and visually impaired museum visitors frequent museums to engage with the art work, but they are often passively excluded from social interaction with other patrons because of their disability (vom Lehn, 2010). They typically do not feel comfortable engaging in conversation about a particular piece, nor do they see other patrons' facial expressions and body language, thus widening the barrier to initiating any kind of social interaction. Dirk vom Lehn (2010) conducted a study where blind and visually impaired museum visitors were paired with sighted guides to help them explore certain "touchable" objects made available by the museum. The sighted guides could describe what the piece looked like and how it was oriented while the blind or visually impaired individual felt the piece and asked questions about what they were touching. Vom Lehn's study found that this paired interaction helped both sighted and visually impaired visitors to understand the pieces more because they were able to discuss it from different vantage points and could think critically about what they were experiencing (vom Lehn, 2010). The study shows that social interaction within museums can occur with blind and visually impaired individuals, but that this must happen through an established program or from individual assertiveness and interest. My research explored how blind and visually impaired teenagers and college age-adults experienced art events, including who they went with and how they relied on help from family and friends to understand what was taking place during a performance or event. ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 28 Theatre and Opera Performances. Live theatre and opera performances are art forms that tend to be more accessible to the blind and visually impaired community because of the reliance on audio transcription or audio description (AD). Audio description is extremely helpful for watching TV and movies (Romero-Fresco & Fryer, 2013), and is almost essential for patrons attending live performances. AD helps those who are blind or visually impaired to experience a live theatrical play or opera by hearing something akin to a sports "play by play" of the action. This typically takes place with a headset and a transmitter. The audio description can be either live or pre-recorded depending on the type of show (Udo & Fels, 2009). Often times, a trained professional reads aloud a modified script of the performance and will add in their own interpretation of certain scenes or situations through descriptive language so that blind and visually impaired individuals can "visualize" what is happening in their own mind. This may also include more detailed information about the set, props, costumes, body language, and stage position of the performers on stage (Eardley-Weaver, 2013). Because many blind and visually impaired people cannot see all the details that sighted people can, audio description allows them to experience the performance as richly as possible. In one study, an eighth-grade theatre class decided to create audio description for their production of Fiddler on the Roof. Youth from a school for the deaf and blind were invited to attend, and feedback was elicited from youth regarding the type of language that should be used, making sure that the vernacular was more attuned to how youth talk, describe things, and understand the world (Udo & Fels, 2009). Although only one blind youth was able to attend the show, the feedback regarding the AD was very positive. The youth patron felt that the AD was well done and really reflected the story in a youth-centric way (Udo & Fels, 2009). ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 29 A number of theatre and opera companies provide AD services for blind and visually impaired patrons in conjunction with touch tours that allow patrons to meet the actors and talk with them about the play, feel the costumes of the actors, and touch the props and scenery that will be used on stage, in addition to physically touring the stage and understanding where props and performers will be positioned. Some theatres provide a more in-depth AD of the show by giving blind and visually impaired patrons access to the shows' synopsis and information about the plot and characters before they attend the production (Eardley-Weaver, 2013). This can be done through a CD or other audio-recording that can be accessed from the theatre or from the theatre's website. Studies have shown that patrons look forward to having access to this type of background information about a show before they attend-listening to the information before they go to the show helps them retain the information better so that they feel more engaged with the show as it is happening (Eardley-Weaver, 2013; Romero-Fresco & Fryer, 2013). Lifestyles of Blind and Visually Impaired Youth In an attempt to understand how blind and visually impaired teenagers and college-age adults currently access art, or would want to access art, I engaged with literature that explored different facets of youth's day-to-day living-including development of social skills, leisure activity, family life, and internet use. These are topics that would provide insight into the daily functions and outlets for both blind and visually impaired individuals and sighted individuals alike. Leisure Activities. Blind and visually impaired youth participate in leisure activities in different ways than their sighted counterparts since many leisure activities involve some sort of physical routine or manipulation that must be observed. This does not mean that blind and visually impaired individuals cannot engage in sports or handicrafts, it merely suggests that those with ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 30 visual impairments must learn accommodations that can make leisure activities both pleasurable and fulfilling. According to Jessup, Cornell, and Bundy (2010), "Leisure activities, set within personal interests, provide a context in which an individual may exert control over the environment, act autonomously, and develop social skills and other competencies" (p. 419). In some ways, leisure activities are just as important as school or employment since leisure activities can shape an individual's sense of self and give one's life meaning. Leisure activities allow individuals to become part of a group where they can find a sense of belonging and are valued for their similar interests rather than being defined by their disability. Blind and visually impaired youth were found to engage in activities that could be done indoors, or that were considered individual activities, which was not the case for their sighted peers (Khadka et al., 2012). Social Skills. Developing social skills is a daunting but important task for youth, whether they are blind and visually impaired or sighted. In a study by Zebehazy and Smith (2011), blind and visually impaired youth's (ages 13-16) social skills were compared to youth with different physical and/or mental disabilities, e.g., speech impairment, hearing impairment, mental retardation, and autism, among others. This study defined social skills through a variety of traits including how well the youth could make friends, how well they receive criticism, how well they control their temper when arguing with another youth, or how easy it was for them to start conversations on their own (Zebehazy & Smith, 2011). Overall, blind and visually impaired youth were more social than their counterparts with different physical and/or mental disabilities. It was also found that blind and visually impaired youth who participated in extracurricular activities or were employed showed a higher level of social skills than youth who did not participate in these activities (Zebehazy & Smith, 2011). ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 31 However, it is important to note that the study did not include sighted youth. When compared to sighted youth, blind and visually impaired youth were actually less social (Wolffe & Sacks, 1997). Wolffe and Sacks (1997) found that blind and visually impaired youth (ages 15-21) actually spent more time alone at home, participating in passive activities which can be defined as "watching television, listening to the radio, reading, spending time on hobbies, and playing a musical instrument alone" while sighted youth spent time "exclusively with friends and only occasionally with parents or siblings" (p. 9). When it comes to social skills and activity, youth with disabilities tend to feel more socially isolated (Gerber & Kirchner, 2001), but blind and visually impaired youth who participate in active leisure pursuits find that they feel more socially accepted and have a more positive sense of self (Jessup et al., 2010). In one study, blind and visually impaired teenagers said they were happy with the friendships they created and that having access to certain types of assistive equipment helped them do more activities with these friends. However, they also noted that it was difficult for them to do all the same things as their sighted friends such as wandering off for walks in the park or running over to a friend's house- typical things that teenagers do to assert their new-found independence (Arndt, Lieberman, and James, 2014). One study in Sweden found that blind and visually impaired teenagers tend to do activities around the house that do not require a lot of physical manipulation. They also did not spend a lot of time with friends, but preferred to be alone or with a few members of the family. This is often the opposite for sighted teenagers. Sighted teenagers spent considerably more time talking on the phone with friends, going to places with their friends, and spending more time away from the home and their family. Blind and visually impaired youth tend to stick to a routine each day that rarely deviates, and if it does, is often led by a member of their family or is done ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 32 with the school. For sighted teens, the ability to be more independent meant that they could create a more flexible schedule for themselves, allowing them the freedom to engage in spontaneous events or activities if the situation arose (Kroksmark & Nordell, 2001). Active leisure pursuits do not have to include group or team sports, they can include other activities as long as the activity is shared via a community platform, e.g., website, public radio, or podcast (Jessup et al., 2010). Many visually impaired youth use music as a form of leisure activity, but often do so alone or via online communities. This tendency to be solitary or interact with others online limits the amount of in-person communication and thus hampers visually impaired youth's ability to improve their social skills (Hye Young et al., 2015). From these studies, one could infer that participating in the arts could help blind and visually impaired youth and college-age adults to feel more social and have more confidence. Many art events and classes involve a large number of people who are often excited to connect with people who have similar interests. Even if you create artwork in solitude, there are many websites online such as Deviant Art and Behance, among others, which allow you to share your work and receive feedback from other artists and art enthusiasts. In this way, the arts provide an opportunity for personal growth and social connection. Internet Access and Use. Access to computers and the internet is an essential part of life. For individuals with physical and mental disabilities, access to the internet can provide a means for social interaction and personal development as well as a resource to learn and explore new things (Gerber & Kirchner, 2001; Wolffe & Sacks, 1997). Parents of teenagers who are blind or visually impaired feel that access to the internet and other technology creates more opportunities for social interaction, and they make it a point to create these opportunities for their children (Arndt et al., 2014). In a Canadian study, researchers found that blind and visually impaired ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 33 youth and adults used the internet and social media to socialize or keep in touch with their friends. They found that younger individuals spent more time on social media than the older individuals, and that those who were blind spent more time socializing online than individuals with low vision (Gold et al., 2010). It is difficult to get definitive numbers on how many people access the internet, as studies often use different terminology when asking questions, which can lead to inconsistencies (Gerber & Kirchner, 2001). Research done by Gerber and Kirchner (2001) revealed that individuals with only visual impairments utilized the internet less than sighted individuals. However, they did find that visually impaired and sighted individuals between the ages of 25-49 who were employed used the internet at nearly the same rate (Gerber & Kirchner, 2001). This suggests that visually impaired individuals use the internet most often at work. If they are accessing the internet from their place of employment, they are most likely not accessing websites regarding arts organizations or art events they could participate or engage with. This would suggest that online access to art events would be limited to visually impaired individuals using the internet in their own homes. This could present a barrier for blind and visually impaired individuals to access the arts through virtual means and should be explored further. Family Life. Individuals who are blind or have visual impairments typically need more types of support in their lives than those who are sighted. For example, a blind or visually impaired child or teenager may need more assistance in school to participate in class projects, or may need more time and assistance completing homework assignments. Often times, individuals who are blind or visually impaired tend to rely on assistance and support from their family and friends in order to complete school assignments, experience certain events, or travel from place to place (Rosemblum, 2000). ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 34 One study noted that parents of teenagers who were blind or visually impaired worked hard to ensure they were not being overprotective of their children and that they trusted them and allowed them space to grow and try new things (Arndt et al., 2014). However, a different study discussed how several teenagers felt their parents were more controlling because they were worried about their child's safety in relation to their blindness, and that this created tensions for the teenagers as they tried to exert a certain level of independence that is often craved for during this stage of development (Rosemblum, 2000). Blind and visually impaired youth felt that their parents were not comfortable with their independence in doing outdoor activities, and often limited these opportunities (Khadka et al., 2012). Rosenblum's study found that some teenagers felt that their families treated them differently, often making them feel as though they were not as smart as their siblings, or were not as mentally developed as other people their age. They also felt the stigma of their disability by their family, noting that some of their siblings were fearful that blindness was genetic and that their own children may be blind or visually impaired (Rosenblum, 2000). They discussed how their families did not really understand them or their disability and that they were sometimes left alone or not included in family outings or activities. From this study, one could conclude that teenagers who are blind or visually impaired have a somewhat negative outlook on their ability to be independent and their relationships with their family, even though they spend more time with their family than with friends. However, we should be cognizant of the fact that this study does not speak for all blind and visually impaired teenagers. A different study noted that blind and visually impaired teens had trouble reconciling with the fact that they would not be allowed or able to drive. As this is an important "rite of passage" for many teenagers, this opportunity did not present itself to blind and visually ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 35 impaired teenagers. This inability to drive made some teenagers feel like they were being excluded from social activities with their peers, and some also noted that it may limit their professional careers as driving may be necessary for specific types of jobs (Khadka et al., 2012). Blind and visually impaired teens are more reliant on their families for transportation to school and to other activities whereas sighted teens have more independence and can often drive, walk, or take public transportation to navigate to different places. This reliance on family members to access events or venues can enforce the idea that blind and visually impaired teens cannot be independent (Kroksmark & Nordell, 2001). Does this lack of independence hinder teenagers from accessing art programming? My research examined how teenagers accessed the arts and how they participated in art events. The implications of relying on others and its correlation with travel and access to art events is discussed in more detail in Chapter IV: Findings. Gaps in the Literature The majority of the literature examined how blind and visually impaired individuals accessed and engaged with museums (Buyurgan, 2009; Hayhoe, 2014; vom Lehn 2010), as well as how they developed social skills and performed daily tasks. Much of the literature cited in this review sought to understand how blind and visually impaired individuals interacted and navigated with a particular space, how they have adapted to participate in "main-stream" society, and how they have come to be excluded from different activities throughout their life. What I did not uncover from the literature review was how blind and visually impaired teenagers and college-age adults chose to engage with the arts, who they attended art events with, what types of art they created, and what meaning they derived from this engagement. I was also unable to find any research that spoke specifically about demographics of blind and visually impaired teens. There was one study that highlighted female responses to certain questions, but overall, the ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 36 research I engaged with did not discuss gender, sexual identity, race, or social status. Although I did not intend to focus on any of these topics in my own research, I realize that this is something that is lacking from the current literature and is something that could be a focal point for other researchers working in this area in the future. Feedback from the blind and visually impaired participants was also scarce throughout-where were their voices? Through my research, I intended to add a valuable perspective to the current literature through qualitative investigation. Conclusion By engaging with the current research, I have found that there is a small, but thoughtful body of work that explores the lifestyles of blind and visually impaired individuals and their access with the arts-from their engagement with museums to their ability to develop social skills as adolescents. Each of these works highlights an important perspective, and allows the researcher to develop a more holistic understanding of the world in which blind and visually impaired individuals exist. In order to contribute to this body of research, I sought to understand how teenagers and college-age adults engage with, access, and understand the arts. This research will fill a much needed gap in the current literature and will help inform arts organizations-not just in Utah, but hopefully nationwide. I have provided a detailed explanation of my research methods for this project including recruitment, data collection, data analysis, and ethical concerns in Chapter III: Research Methods. These methods may be helpful for anyone interested in undertaking a similar qualitative inquiry in this area. ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 37 Chapter III: Research Methods Introduction As of 2015, 1.4% of Utahan's were classified as either blind or physically disabled (Utah State Legislature, 2015) This chapter outlines how I accessed the blind community, conducted outreach to blind and visually impaired individuals, gathered and coded information from oneon-one interviews, and describes what I did with the data once it was collected. This chapter will explain the methods I used to collect data for my research. Access to Population and Recruitment Since I am not a member of the blind and visually impaired community I had to work with community organizations across the state to gain access to the teenagers and college-age adults that I could potentially interview for my research. I was able to work with various groups such as the National Federation of the Blind, the Utah State Library for the Blind and Disabled, the Utah Schools for the Deaf & Blind, Art Access, the Moran Eye Center, Project STRIVE, and several University and College-disability service centers in order to build rapport with individuals who participated in my research. Rapport is the act of creating mutual trust with an individual or community that allows for a liberal exchange of ideas and perspectives (Spradley, 1979). In order to access a potential pool of participants I met with representatives from each of the previously mentioned organizations to make connections within the blind and visually impaired communities. I recruited participants via email, phone calls, and in-person meetings at the community organization's venue (see Appendices C through E for email scripts, F and G for verbal recruitment scripts, and H for a recruitment poster). Since the population I wanted to interview has trouble reading posters and flyers, I made sure to send any information in a word ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 38 document via email so that the participant could utilize whichever assistive technology worked best for them. I also recruited several people via phone call, which was supplemented by an email with the word document describing the details of my research. However, after all of the marketing and outreach, I was only able to recruit participants from the Utah Schools for the Deaf & Blind and from Project STRIVE, which is an off-shoot of the National Federation of the Blind. I was able to speak to the principal of the Utah Schools for the Deaf & Blind who connected me with the teacher of the blind IEP (Individualized Education Program) 1 class. This class consisted of students who had various types of visual impairments and who worked with their teacher to learn independent living skills, braille, and functional math and reading, in addition to meeting their IEP goals. I was able to recruit two participants from my presentation at a Project STRIVE meeting in February where I discussed my research project and asked if anyone would be interested in participating. My eighth participant was suggested to me by my graduate school network, and although they were outside of my target age range, the individual was interested in my research and volunteered to participate. This participant has a visual impairment, and is very active in the arts. I chose to include the data from this interview because of challenges I had with recruiting. In order to thank each participant, I purchased $15.00 gift cards to Target to give them. The gift cards were funded through SLICE (Student Leaders in Civic Engagement) which is a program facilitated by the Katherine W. Dumke Center for Civic Engagement at Westminster College. This thank you gift was approved through Westminster College's IRB process. Independent Education Programs or an IEP is a legal document made between a child with disabilities and their school. The IEP "spells out your child's learning needs, the services the school will provide and how progress will be measured" (Understood.org). 1 ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 39 In order to find an interview location, I asked each participant where the best place to meet would be, except for the interviews at the Utah Schools for the Deaf & Blind, as all of those interviews were conducted during school time on-campus. The ability for the participant to feel safe in sharing their experiences is crucial in qualitative research, and I wanted to ensure each participant felt safe during the interview process (Kvale, 1996). For the five students at the Utah Schools for the Deaf & Blind, I conducted those interviews at the school. In order to conduct those on-site interviews, I first met with the principal beforehand and discussed the project again, and then met with the teacher whose students I would be interviewing. I then conducted several interviews while I was on-site. I originally wanted to conduct the interviews over several days, however conflicting schedules and the ability to travel to Ogden presented a challenge for me, so I conducted four interviews the first day I was there and then returned to the school another day to get the last interview. Although this did not allow me a great deal of time to analyze my transcripts, I was able to get the interviews I needed which did yield some interesting data, which I will discuss in Chapter IV. From the Project STRIVE group I was able to recruit two participants, one that was 17 and another that was 24. I found out about Project STRIVE through Everette Bacon, the current president of the National Federation of the Blind, Utah Chapter. I contacted the director of the Project STRIVE group and she invited me to attend one of their monthly meetings. I attended the meeting and gave a brief description (using a combination of Appendices G and F) of my project, the purpose of my research, what I hoped to learn, and whom I was looking for. Several people originally spoke with me about participating, but after several follow-up phone calls and emails, only three individuals said they would participate. In the end I only ended up with two participants because the third teenager was unable to make the interview work within their ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 40 schedule. For the 17-year old from the Project STRIVE group, I contacted this person via email and tried to set up a date and time that would work best for them. We originally planned to meet at their home and would conduct the interview there, but after several personal conflicts we decided to do the interview over the phone. I made sure to collect the signed assent form from this participant before we conducted the interview, and they were able to scan a copy of the signed assent form to me before the interview took place. For the two individuals over the age of 23, I emailed each participant and asked them if they were still interested in participating. Once they both agreed, I set up a date and time that worked best. One of the participants felt comfortable meeting at Westminster College and the other participant allowed me to do a phone interview after we had several scheduling conflicts that prohibited us from meeting in person. Overall, the phone interviews worked well. I was disappointed I could not meet with everyone in person in order to gain any kind of rapport, which I had originally intended to do. Johnson (2017) defines rapport as "building close relationships of mutual understanding with others […] finding areas of commonality whenever possible" (p. 69). Although I did not meet with two of the individuals in person, I made sure to explain my research and my reasons for exploring this topic-sharing my personal beliefs around the arts and inclusion. I believe these two individuals felt a connection with what I was doing and felt comfortable sharing their stories that I could use as part of my research. Before each of the interviews, I spoke with each of my participants and reiterated my passion for the arts, and the ways that I had engaged with the arts throughout my life. This allowed me to connect with my participants, and they shared some personal stories with me about their own connections to the arts. ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 41 Data Collection Interviews. In order to understand first-hand how blind and visually impaired teenagers and college-age adults conceptualized and accessed the arts in Utah, I conducted eight semistructured, one-on-one interviews. Steinar Kvale (1996) describes research interviews as "…an interpersonal situation, a conversation between two partners about a theme of mutual interest" (p. 125). I chose to utilize semi-structured interviews as my main research method because this particular method relies on a theme or sequence of themes and questions, but is also nimble enough to allow for unscripted follow-up questions and deeper engagement with the experiences of your interview participants (Kvale, 1996). I conducted interviews with three individuals between the ages of 13-17, three interviews with individuals between the ages of 18-23, one interview with an individual who was 24, and one interview with an individual over the age of 40. I used the same basic interview guide (Appendices A and B) for each age group but with minor tweaks to questions depending on the age group. The predetermined questions provided me the opportunity to adjust which questions I would ask and allowed me to ask new questions that I had not planned for based on the trajectory of the conversation (Johnson, 2017). I wanted to have an even number of interviews from each age group, but due to the nature of the recruitment, I was not able to pick which people I interviewed to ensure they aligned with the particular age group for which I was lacking participants. I anticipated the interviews with college-age adults to last about 60-90 minutes and the interviews with teens to last about 30-45 minutes, but it turned out that almost every interview I had lasted around 30 minutes, some lasted an even shorter amount of time. Some of the participants did not have a lot to say about their participation in the arts, nor their feelings about the arts or the role in played in their lives. In order to mitigate any discomfort with the ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 42 conversation, I allowed the participant to guide where the interview would go and allowed them the opportunity to finish when they felt they had exhausted their opinions on the topics at hand (Johnson, 2017). I was able to recruit (see recruitment scripts in Appendices C through H) five participants from the Utah Schools for the Deaf & Bind. I reached out to the principal and she connected me with a teacher who works with blind students as they prepare for independent living skills. Some of the skills they learn are vocational skills, and it was apparent that they participated in the arts as part of their vocational training, though they also did some arts activities as part of the schools' on-campus activities for the students. When I interviewed each of the five participants, I made sure that they had been told about the research project and that they felt comfortable talking about it. For the students who were under 17 years of age, I asked the teacher if I could contact their parents to discuss the purpose of the project and to ensure they felt comfortable allowing their child to participate in this type of research. Each of the parents agreed to have their child participate and I was able to get all of the assent forms (Appendix J) signed by the student and the parent before I conducted any interviews. I also made sure to explain my research to the two students who were over the age of 17, and was able to accept signed consent forms (Appendix I) before I conducted any interviews. I chose to do interviews because I believe creating a dialogue can yield interesting perspectives and feelings, and because I am interested in hearing about each individuals' thoughts and experiences first-hand. Although Kvale (1996) states that interviews often assume an asymmetry of power (wherein the researcher steers the conversation), I would like to think that the interviewee felt they had the agency to add their own probes and questions, allowing ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 43 them to have an equal amount of power in shaping the conversation (see Appendices A and B for interview guides for teenagers and college-age adults). Audio Recording. All of the interviews were audio-recorded with a compact audio-recorder I purchased. I was also able to record the phone interviews with this recorder by putting the conversation on speaker phone. Although I hoped to do all of my interviews in person, I conducted two of my eight interviews over the phone due to scheduling conflicts and time constraints. I wanted to get a mix of participants from both rural and urban parts of the state, however, all of the participants were from the Wasatch Front area of Utah; no individuals from outside the Wasatch Front connected with me about this project. Of the six interviews I conducted in-person, I felt these interviews were the richest and allowed me to really get a sense of the person, their personality, and how they interact with their environment. I had planned to discuss having additional interviews with each participant if the need arose, but after the interviews I decided I did not need to conduct any follow-up interviews with the same participant. If I had any questions about anything I just asked them as part of the member checking exercise, which I will explain in more depth later on in this chapter. Grant Application Responses. I currently work in the grants program at the Utah Division of Arts & Museums. Through our grants program, we provide funding to over 200 arts organizations, museums, schools, and folk artists across the state. As part of our grant application, one of our questions asks applicants to describe the types of accessibility they provide for those who are differently-abled. Because each of these applications is considered public record I was able to collect and analyze these answers. I chose to gather answers from our top tier of applicants for the most recent fiscal year (2018). These organizations span the entire state. In my findings I will not be listing the name or location of any organizations as to protect ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 44 their identity. The purpose of using these self-reported answers was to analyze: 1) how arts organizations answered the question, including how they believe they are providing greater access to differently-abled individuals, and 2) to see if, in a general sense, their answers were corroborated or contradicted by the responses from my interviews with blind and visually impaired individuals. I believe this was an interesting way of comparing the data I collected from the interviews, and also allowed me to get a better understanding of the way arts organizations currently provide access. Their responses also helped me curate a list of recommendations for increasing accessibility, which appears in Appendix K. Research Limitations Although I had hoped to interview people from all the regions of Utah, I ended up with individuals in Salt Lake and Weber County only. Due to the location of the organizations I was working with, I was not able to reach blind and visually impaired individuals who live off of the Wasatch front. Also, although I wanted to ensure that the participants were ethnically and geographically diverse, I was not able to ensure this since the individuals had to self-select in order to participate and I had no control over who participated. I did hear from several people associated with the Project STRIVE group that their members live all across the state, but the ones that were interested in participating lived along the Wasatch Front area of Utah. Although this was not ideal for my research, it did provide context to the types of events these participants would attend. I originally wanted to have diversity in gender and ethnicity with my participants. Of the eight participants, two were female and two were non-White/mixed race. This was not the type of diversity I was expecting, but it does align well with the current demographics of Utah. Also, even though my data collection for this project has ended, I am still working on a mechanism to ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 45 collect other stories and insight about arts participation and the blind to continue this work and ensure that a wide variety of voices are being heard. Although I originally wanted to conduct around 10-15 interviews, I was able to conduct eight, which was a good number of interviews to transcribe, code, and analyze. I would have liked to have interviewed a total of ten individuals, however, the time constraints and people's schedules did not allow this to happen. I truly believe this feedback could allow for an exciting dialogue to begin-and could organically create connections in the wider community. Another issue I had planned for was difficulty in gaining informed consent and assent from the participants. This was not as much of a challenge as I had anticipated. For the participants at the Utah Schools for the Deaf & Blind, the teacher was able to assist me with getting all the forms signed since she knew all of the students and parents and had mechanisms already worked out for these types of situations. For all the other interviews, I was able to send the forms as a word document via email and the participants either sent me a completed scanned copy of the form, or they brought it with them the day of the interview. Also, due to a last minute scheduling conflict, I was able to gather consent via an audio recording. Ethical Concerns Due to the nature of my study there were no ethical issues that arose. I submitted a proposal to Westminster College's IRB committee which was approved in late Fall 2016. The IRB proposal included a sample of the interview questions I wanted to ask as well as a copy of the consent forms needed to grant me access to the information the community could provide me. I was able to recruit participants between the ages of 13-17, 18-23, and two individuals outside of these age ranges. Any participant under the age of 18 was required to have an assent form signed by both them and their parent or legal guardian. All participants were able to do this ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 46 with no issues. All participants over the age of 18 were required to sign the consent form for adults, per my IRB. The consent and assent forms were obtained before the interview with the participant, except for the one phone interview where oral consent was given and audio recorded before the interview was conducted. As part of the consent process I asked every participant to pick a pseudonym so that their identity would remain private. I informed all participants that I would not be using their real names, but rather, their pseudonyms, in my findings. Therefore, all names used in this paper are pseudonyms. I also took the opportunity to accept consent forms via an audio recording of a consent conversation (Given, 2016) (see Appendices I and J for copies of the consent and assent forms). In the Winter of 2017, I began doing my research and made sure to follow the procedures outlined in my approved IRB proposal. None of my participants had any problems with the interview or the transcriptions. As part of the interview process, I explained the rationale for my research with each participant while I was recruiting them, and again before the interview took place. I also gave each participant the chance to ask me any questions or discuss any issues they had with the interview format. The rationale for my research included my own beliefs and assumptions regarding the arts and why I am conducting this research. I told each participant several times that if they felt uncomfortable with my beliefs, the interview questions, or any other part of the research process, they could terminate their participation at any time and any information I had collected from them would be destroyed and would not be utilized in any research findings. Each participant agreed with this and each participant allowed me to use their data without any changes. Each participant also created a pseudonym so that I could keep all names anonymized. This method was used to protect the identities of the participants, especially since I had conducted interviews with minors. In order to keep the datum secure, I kept all audio recordings, ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 47 transcripts, consent/assent forms, and analysis documents on a locked, password protected laptop. I was the only person who had access to these files. Data Analysis As I conducted my interviews, I utilized several methods of analysis to ensure that I was able to gather the data I needed and that the data I collected was accurate. Data Accounting Sheets. While I was conducting the one-on-one interviews with participants I created a data accounting sheet to track the progress of my interviews and survey responses (Miles & Huberman, 1994). I changed the typical format of this sheet to allow me to keep track of the questions I asked, and this was tracked through a series of color coded boxes. Notes were also added to this sheet to help me keep track of things that changed or needed to be considered. These sheets helped guide me as I conducted each of my interviews. I was able to track which questions worked, which didn't work as well, and whether I asked a certain question or set of questions to determine whether that question should be eliminated or reframed. It was an interesting way to engage with my questions and interviewees as the colors helped me visualize what was happening without the need for a lot of text. Coding. Once I had audio recoded and transcribed each interview, I engaged in preliminary coding to see what patterns or themes emerged from the data. Coding is the process of assigning meaning to particular words or phrases that are relevant to your research study (Miles & Huberman, 1994). This exercise allowed me to see what kind of information I had gathered and whether or not the questions I asked yielded the type of answers I needed in order to answer my research question. I noticed that I had asked a lot of extraneous questions that were not in my guide, and although they allowed for fun conversation to take place, the data from these questions did not help me with my findings and could not be used since they did not really ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 48 correlate with the answers from the other participants. I realized later on that I needed to stick to my original interview guide questions with only minor modifications as needed. In order to begin coding, I first transcribed each interview by listening to the audio recording on headphones while simultaneously typing the entire interview into a word document on my computer. After I completed transcribing each interview, I printed the interviews, read the interviews, and included marginalia where I felt it was needed. I underlined certain words or phrases that related to the ideas of accessibility, arts engagement and participation, and definitions of art. I completed this exercise for each of the eight interviews I conducted. Once I completed this exercise for each printed interview, I went through all of my marginalia and created a list of the words and phrases which were repeated the most. This list became my first set of codes. After this initial set of coding, I set aside my list of codes and re-read each interview trying to find any new ideas or themes that did not emerge from my first reading. I added new codes to my list from this second reading. After I had completed two readings, I went through my list of codes and condensed similar codes in order to reduce the number of codes I would be using for my data analysis. I read each of my interviews for a third time to ensure I was not missing any data, but also to ensure that the codes I used were truly representative of what my participants expressed. I determined from this third reading that there were no new ideas or codes emerging from my data. After this third reading, I went through my list of codes and began looking for larger themes to emerge. I was able to distill my long list of codes into four main themes which emerged from the list of codes. After looking at the list of codes, I realized there were organic groupings that existed, for example, codes regarding accessing events or codes regarding types of accommodations used. I assigned a different color to each theme and began to re-code each of my interviews with a colored highlighter. These highlighted transcripts were kept ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 49 in a folder, and I referred to them extensively as I wrote Chapter IV. The coding process allowed me to see the data in a larger and more visual way-accounting for gaps in the information or highlighting particular trends (Miles & Huberman, 1994). Validity of Assertions Validity in qualitative research can be defined as ensuring the information gathered from the participants is true to them and accurate to their point of view (Creswell & Miller, 2000). Since I am not a member of the blind or visually impaired community I had to ensure that both my research question and data collection methods did not reinforce any assumptions or assertions that I had. In order to do this, I kept my research question broad enough so that I was not assuming how or why the blind and visually impaired community conceptualized or accessed art. While it was true that my research question assumed blind and visually impaired individuals were already accessing or creating art, I feel this assertion was valid because there are always members of a community that participate in or access the arts to some degree. Through my own personal and professional experience, I have noticed that many people participate in the arts but don't think they are because they don't consider themselves to be creative or artistic. I did find some individuals who did not engage in the arts, but I ultimately chose not to interview these people because I wanted to really focus on the types of art activities and events blind and visually impaired individuals were engaging in and how this experience was for them. In the end, I was comfortable with the direction I chose. I can still choose to speak to people who do not participate in the arts at a later date after the completion of my project, but I made the choice not to include these individuals as part of my data and I feel confident in this decision. Researcher Reflexivity. To be cognizant of my assumptions I made sure to practice researcherreflexivity whereby I disclosed to all participants that the arts are important to me and that I was ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 50 interested in understanding how blind and visually impaired individuals engaged with the arts because I believe the arts are something that should be accessed by all citizens, not just those who are sighted. I made sure to explain to my participants that I believed the arts are a public good, and that I believe strongly in the power of the arts to help individuals and communities shape their identities and foster a sense of belonging. This form of validity ensured that all participants were clear about the assumptions, beliefs, and values I held as a researcher including how this informed my inquiry (Creswell & Miller, 2000). I realized that because I am an adult some of the youth participants may have felt pressured to answer the questions in a certain way. However, I felt that the teenage participants were honest with me and did not just tell me what they thought I wanted to hear from them. I also made sure that they knew I wanted their honest opinion and that their information would not be used against them or be used in a way to get anyone in trouble. Member Checking. Each participant was able to review their interview before I used their data in my research. I made sure to transcribe each interview and then emailed each transcription to the respective participant. None of the participants had any issues with the transcripts and allowed me to use all of the data. I was also able to get some clarification on parts of the interview I did not understand or had questions about. This was helpful for me to correct any misinformation and to ensure I was capturing exactly what the person said. I was originally going to print off the transcripts in large print format, but after speaking with each of the participants, they told me an emailed word document would work best as they can use a screen reader or other assistive technology to read the transcript. Giving the participants the opportunity to review these materials is called "member checking" and is extremely important since the ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 51 participant is sharing their own personal experience and they have the right to ensure their truth is being portrayed accurately (Creswell & Miller, 2000). Conclusion As a researcher, I needed to be cognizant of the participants in my study and their willingness to participate. For this reason, I chose to do one-on-one interviews because I believed creating a sense of rapport with the participants would allow for both the researcher and participant to connect with one another. For the most part, I felt this happened and that I was able to connect with each of my participants, even in just a small way, by sharing in something that they participated in and enjoyed. By conducting these interviews, I was able to learn more about these extraordinary individuals, including their personal beliefs and experiences, not all of which were positive. I believe that conducting the semi-structured interviews lead to some rich data, and my hope is that these datum will help give a voice to blind and visually impaired individuals in Utah-at least with respect to the arts. I truly believe the arts community could really benefit from this research, and that they would be willing and interested in benefitting the blind and visually impaired community but are unsure of where to start. I believe I have created a safe space where dialogue between arts organizations and the blind and visually impaired community can begin. ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 52 Chapter IV: Findings Introduction With the personal belief that the arts should be accessible by all guiding my work, I conducted qualitative research around a topic that I have always felt strongly about. According to the most recent arts participation survey conducted by the National Endowment for the Arts (NEA), 84.5% of Utahans attend visual or performing arts events, more than any other state in the country (National Endowment for the Arts, August 2016), beating out states like California, New York, and Oregon. With a population of just over 3 million individuals, Utah can boast that over 2 million residents are participating in the arts (U.S. Census Bureau, Population Estimates, 2015). However, what we can't definitively proclaim is what groups of people are attending these events. Although the NEA survey does a great job breaking down different statistics of arts participation per capita, they were not able to refine this further by uncovering the specific demographics of the individuals attending these events. While this would take much more time and energy, this was not information I was able to find, so I did not speculate about it here. What I could provide however, was qualitative information regarding how members of the blind and visually impaired community in Utah are accessing and participating in the arts. Through my research, I was able to conduct one-on-one interviews with eight blind or visually impaired individuals who live in Utah. Research was conducted around the following question: how do blind and visually impaired teenagers (ages 13-17) and college-age adults (ages 18-23) come to understand and engage in the arts. I also interviewed two people outside of this age range due to challenges recruiting only people in the ranges I specified for this project. Along with this question I also sought to explore the role arts played in these individuals' lives, and how they engaged with arts programming in Utah. ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 53 This chapter will discuss my findings including common themes that connected each of the participants' interviews. My findings will be outlined as follows: 1) Accessibility in Utah, 2) Current types of arts engagement and participation, and 3) Current forms of accessibility and accommodations in Utah. These were the themes identified through analysis of my research data. Through this qualitative research project, I was able to understand the lived experiences of several blind and visually impaired individuals who engaged with the arts in Utah. I learned more than I anticipated and I have shared my recommendations for how arts access can be expanded in Chapter V, and in Appendix K. Accessibility in Utah Examples of Passive and Active Exclusion Hayhoe (2014) describes the idea of passive and active exclusion for members of the blind and visually impaired communities. Active exclusion is defined as open discrimination and prejudice towards a population that works to purposefully exclude certain people from regular activities. Passive exclusion is when a society or culture excludes a certain group of people unintentionally, by not questioning systemic discriminatory practices or by not challenging stereotypes and by keeping things as the status quo (Hayhoe, 2014). Through analyzing the data from the eight interviews I conducted, I found that there was no conclusive evidence that supported the idea, for or against, the notion that the arts are accessible in Utah. Interestingly, of the eight interviews I conducted, only two individuals noted that the arts are not accessible to those who are blind or visually impaired. What is most interesting about these two individuals, is that they were the most independent of the eight individuals I interviewed-one was 24 and the other was 49. Both individuals lived on their own and had similar thoughts and feelings regarding the difficulty they had, and continue to have, regarding access to art events and ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 54 programs here in the state. I should clarify that when I say "the state" the research revolved primarily around the Wasatch Front area of Utah-mainly Salt Lake County and Weber County. Each of the older individuals recalled situations where they were not able to access an art event or program, and their frustration with this was relayed through their interview. One of my participants, Atmos, discussed a situation with a visual arts venue that was not prepared to accommodate blind or visually impaired patrons: "Recently I went to a gallery stroll and I could not see any of the signs, none of it was…they didn't have the little booklet in large print and I had no idea what was going on." When asked if the individual provided feedback to the venue, Atmos acknowledged that he spoke with someone during the event about an accommodation and the representative from the organization replied with "maybe next time." Hayhoe (2014) noted that blind and visually impaired individuals enjoy going to museums not just for the artwork, but to also create social connections. These types of negative interactions have the opposite effect. Not only was Atmos not able to enjoy the exhibit, he was also actively excluded from participating because there were no accommodations available, and the representative from the organization made no effort to help make the exhibit more accessible. This experience made Atmos feel like he did not belong, and he also felt like he was missing out on the exhibit. Anna described how at a recent theatre performance the organization provided a chance to listen to the show through audio description. Udo and Fels (2009) described audio description as an accommodation that enables blind and visually impaired individuals to listen to very detailed descriptions of the setting and staging taking place on stage through headsets. Anna said the theatre did not provide any large print or braille materials, but she described what she thought was accessible, ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 55 they allowed a sighted person who was along with our group to go up in the sound booth and talk through a walkie-talkie radio and a bunch of us who couldn't see very well had walkie-talkies with headphones and we got to listen to descriptions of what was going on. Anna did note that the radio died halfway through the performance and she "was definitely glad to have the description the first half." The organization tried to make an effort to accommodate Anna and her group, but the faulty equipment did not make the entire experience accessible for those with visual impediments. Another participant, Never Give Up, noted that everything about attending arts events is difficult, including traveling to arts events, which will be discussed in more depth later on: It can be something as simple as going to see somebody perform or somebody talk for one night a week at school. Anything like that takes on a whole different meaning- everything changes with the public transportation system, and in the evening at night. He continued, "If I go up and talk to somebody at an event and I say ‘I am legally blind can you help me find my seat' that turns into a whole dramatic event that no one has ever planned for." From this quote, Never Give Up describes how difficult it is to get help at an event. He is not asking for any special accommodations, but rather needs help finding his seat. He feels that organizations are not prepared to help with something as simple as this because they do not equip their staff with knowledge or training around accessibility. When I asked if Never Give Up typically requested special accommodations such as large print or braille material he explained, "That would be really, really nice but it never happens because nobody has been trained on how to do it properly." Again, Never Give Up suggests that organizations are not ready to provide accommodations for blind and visually impaired patrons because there is a lack of awareness around the topic. ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 56 Atmos responded similarly to Never Give Up's statements when asked if he thought organizations felt uncomfortable receiving feedback about increased access, "Sometimes they're pretty uncomfortable because they're not used to thinking that way-about making it accessible for everyone." Atmos described how he provided feedback to organizations on multiple occasions, but that he did not see any indications that his feedback had been utilized by the organization. Because organizations often interact with individuals who are not visibly disabled, they are not typically thinking about accessibility and they are not always prepared to make accommodations when they are requested by patrons. Organizations actively excluded individuals like Atmos and Never Give Up by not providing large print or braille material, nor were they prepared to help the individual find their seat at an event venue. In just these few quotes, the theories of passive and active exclusion became apparent. In Atmos and Never Give Up's various encounters with arts events, they expressed their discomfort with the inaccessibility of the events. The fact that these participants shared a similar sentiment that organizational personnel are not trained to provide accommodations, or that they may feel uncomfortable, enforces the idea of passive exclusion. Never Give Up's quote reinforces the notion that society is not being proactive when it comes to raising awareness around disabilities and accommodation. Atmos's quote also demonstrates how those with a disability feel "othered" at certain events or venues because they were not considered when these events were designed, and there was no planning, either beforehand or during the event, to help those who needed accommodations due to a disability (Hayhoe, 2014). Perceptions of Accessibility and Age Six of the eight individuals I interviewed were under the age of 21. The 21-year old was in their last year at the Utah Schools for the Deaf & Blind, along with four of the other ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 57 participants. One participant was a 17-year old who attended a mainstream high school in Salt Lake County. Each of these participants was dependent on either the school or their families for transportation and access to various events, including arts events. This is in direct opposition to the two older adults who were interviewed who lived by themselves and were not in the care of an institution or their family. Overall, the six individuals aged 21 and younger all had positive experiences with the arts and accessibility. They each felt that the arts were made accessible to them, either by the school, their friends, or their family. Having these types of support systems influenced how the individual felt about arts accessibility. Ability to Travel and Engage with an Arts Experience. Anna, a 17-year old high school student noted that attending events would be harder if she were attending events by herself rather than with friends or family, I'd have to pay a lot more attention to the accommodation that they provide there. Depending on what the event is, if it's completely visual I'd much rather have someone I know there that knows how to describe things to me. Rosenblum (2000) noted in her study that blind and visually impaired teens are more reliant on their families for physical access to an event, and for understanding what is happening at a certain event. This reliance on others was echoed by Never Give Up as well, Sometimes you'll find somebody that's accommodating and other times…most of the time I can't, you know? I compensate by making sure I'm going to an event with somebody that I can depend on to help me find my seat and help me find where to go. Although Never Give Up is much older than Anna, he still has issues with travel due to his visual impairment. His statement implies that accessing event venues and different programs are not ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 58 always easy for those with visual impairments. Since there is a lack of active accommodations being made, individuals with visual impairments must make special arrangements with friends or family to attend events or to understand what is happening during an event. Although family and friends are often happy to help, this places the responsibility on the person attending the event with the visually impaired individual, and art organizations and venues are none the wiser that their patrons are having difficulties accessing their programs. For the students attending the Utah Schools for the Deaf & Blind, almost all of them said they only attended art events with the school. Although the school focuses mainly on life skills and education, they do provide opportunities for the students to go to various concerts and theatrical productions in Salt Lake City. Each of the students interviewed at USDB noted that they enjoyed participating in art and mentioned creating various arts projects with the vocational coach. They felt that the vocational coach did a good job making the project accessible for them and that these projects were something they could participate in. They also agreed that it would be nice to have more art offerings in the school, including music and theatre classes. Babygirl stated that she enjoyed the crafts they made and added "…we used to put on plays but we don't anymore." I asked her why they were not performing plays and she responded "I don't know what happened. I think it was because we didn't have a music teacher at the time." From these quotes, Babygirl expresses her desire to engage more with theatre, but the school may not have the resources to hire a theatre or music teacher. I also asked the students if they were interested in attending more concerts and theatre shows in the community. Most of them said they would enjoy this. Several of the students mentioned that they were going to a concert this year with the school, and that they have attended various performances in the past such as The Nutcracker. ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 59 Experiencing Art with Friends and Family. The experience of attending events was different for each of the participants I interviewed. One student from the Utah Schools for the Deaf & Blind said that they attended events with their family, saying their family drove them and their friends to events. Most of the students at the school attended art events through the school and did not really mention friends from outside the school. They mentioned participating in activities such as listening to music, watching TV, playing an instrument, and drawing and painting. This confirms the findings from Wolffe and Sacks (1997) that blind and visually impaired youth are less social than sighted youth and typically engage in passive activities they can do alone. Anna also noted that she mostly attended events with friends or family and that her family drove her to events. She also attends events with the Project STRIVE group. Kroksmark and Nordell (2001) discussed how blind and visually impaired teens are typically more reliant on their families for transportation and access to events. Anna did not attend events on her own and did not feel comfortable doing so yet. Anna relayed a story in which she attended her sister's dance performance but couldn't see anything, "I mean my Dad got really creative with it and tried to explain as much as he could, but in the past where I had been to things were people are dancing or doing things like that all I get is ‘I don't know how to describe it'." This aligns well with Rosenblum's study (2000) which noted that youth who were blind or visually impaired often relied on their families more for support and with help experiencing certain events. Visual Impairment and Driving. Atmos and Never Give Up said they attend events either alone or with friends. Atmos was comfortable traveling to events by himself, often walking alone or taking public transportation. He noted that he went to events in Park City and across Salt Lake County. Never Give Up said he tried to stay in the downtown area and would try to get rides from his friends, noting that taking public transportation was not always easy, especially at night. ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 60 These statements show that depending on the age of the person, travel and transportation needs were different. Both Atmos and Never Give Up attended more events and different types of events than the other six participants. I believe they are more independent because they are older in age than the other participants. The younger participants are not at a point where they can travel to events by themselves so they are more reliant on family, friends, and their school to take them to events. Anna, although she is 17, cannot drive a car, so she cannot just drive to an event with her friends or just leave the house to hang out with friends. Rosenblum (2000) explains that blind and visually impaired youth need more assistance traveling from place to place versus sighted youth. Anna's reliance on her family for travel limits her independence, although she did not mention any negative feelings towards this as indicated by Rosenblum's (2000) study in which she discussed how some blind and visually impaired youth felt their parents were too controlling about their independence and this created tension in the relationship. It would be interesting to follow up with these participants in a few years when they are able to travel alone to see how their preferences and modes of transportation have changed, if at all. Lack of Knowledge and Awareness around Accessibility I believe that art organizations are trying to be inclusive, but that they are not always aware of the various ways they can increase accessibility in the programs and services they offer. In my experience, art organizations want a variety of audiences to enjoy their services and events-this is what the arts are known for. I think that for many people, and organizations, accommodating people with disabilities is often not thought of because they have not encountered people with disabilities, or they feel they do not have the resources or knowledge to do this effectively. ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 61 Access and Accommodations. Individuals with disabilities want to experience the same things as non-disabled people, and they want to participate in the arts in their community. When asked if arts programming in Utah was accessible for blind or visually impaired people, one participant said "not at all." When asked if they had been to any art workshops or classes in the community they recalled a recent writing workshop which they felt was accessible. I asked if that particular event was accessible and the response was interesting, "Yes, because I typically bring my accessibility stuff with me." This particular individual has experienced issues with accessibility and so they know to bring their own accommodations so they do not have to ask for them. This answer caught me off-guard at first because I thought the participant was telling me how the class was accessible, but really, he was telling me that HE made the class accessible. This demonstrated that the onus was on the blind or visually impaired individual to bring their assistive technology with them so that they could fully participate in the program. The organization did not mean to exclude the individual, but they did engage in passive exclusion by not communicating with the participant about ways they could make the workshop more accessible (Hayhoe, 2014). I discuss the use of assistive technology later on in this chapter. After speaking with my participants, I found there was an assumption by blind and visually impaired people that an event or program would be difficult to access. An excerpt from the interview reveals this belief: R: "Do you think that even if it's [an art event] just open to everyone people who are blind are like ‘I probably won't go to that because I won't be able to access that'." A: "Yea, I won't be able to-why put in the effort?" ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 62 This statement aligns with Ludwig's (2012) argument that there is a disconnect between how arts organizations think they are being accessible and how people with disabilities are perceiving the accessibility of an organization. Since blind and visually impaired individuals have to consider whether an event or program will be accessible for them, they question whether or not they should attend something based on whether the organization has made it clear they can provide accommodations. Several of the interview participants stated they would be more likely to attend events when there was a clear indication from the organization that they were happy to make accommodations, and that this information was clearly stated on their marketing materials. Anna reinforced this idea, "I'm more likely to go to those events when it says that [accommodations will be provided] because I know at least they're trying to put in the effort." From Anna's response, one could interpret this to mean that organizations who clearly state information about accommodations could see more blind and visually impaired patrons at their events. When asked to describe a recent experience at an art event and how accessible it was, Never Give Up hesitated before he gave his response, "The accessible thing is the hiccup, because what's accessible for everyone else was not for visually impaired or blind. It's a lot easier than somebody like myself where accessibility is completely different." He then went on to explain a recent event he was trying to perform in: This happened about a year ago. I was about to play a large venue for an LGBTQ function. I was just asked to play two songs with a different band as a cameo guest appearance thing and in order for someone like me to do that I had to make sure I had a friend take me there so I could get my equipment there. Any kind of function like that takes on a whole other meaning to someone like me. I can't just get in the car and drive. Before I could say ‘Yes, I'll participate' or ‘I'd be honored to participate in this function', ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 63 I had to find out when it was, what day it was one, where it was located, what time it was at, and then I had to just start building and putting everything in place so that I know that I could get to do a sound check early enough, just so I could get all my ducks in a row so I can have everything go the way I want, you know? So you have the same amount of work to get there and then you have even more work trying to get home because these large functions have a lot of alcohol being served. So, if you're relying on somebody that might drink or drink too much, it impedes your ability to get back. It changes everything. They're not accessible. It's like some Herculean event, you know? It was palpable from this response that Never Give Up was exasperated from these types of experiences. For him, the ability to just pack up his equipment and go someplace was completely impossible. Accessibility for him goes even further than just an organization saying they have accommodations, but rather that an organization should be more considerate regarding the potential barriers someone who is blind or visually impaired has to overcome in order to perform at their venue. If venues wanted to make their spaces more accessible, they would explore ways to help blind and visually impaired individuals with travel and other logistics. Never Give Up was obviously frustrated not just with the lack of accessibility, but with the lack of awareness that exists around the accommodations that need to be made for blind or visually impaired individuals. Again, we see that blind and visually impaired individuals face passive exclusion; access or ability to participate is not really considered when working with someone who is blind or visually impaired (Hayhoe, 2014). Societal Barriers. Never Give Up shared this thought, "The thing is, when you're dealing with a disability that's a visual disability, society judges you. They think that people are-either you can see or you're blind, there's no middle ground. 92% of people who are completely blind still ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 64 have some kind of sight." Before I started this research project, I was unaware of the various types of visual impairments that existed. I would assume that there are others who are unaware of this, just as I was. If that is the case, there is reason to believe that there is a lack of understanding regarding all the different types of visual impairments and how each of these lends itself to different types of accommodations. Never Give Up made another interesting point, that it's not just blind individuals who are not participating in arts events, but that society is excluding members of the community who have something valuable to share, I know so many musicians that are just the utmost incredible performers and players who are blind who will not go out and will not participate in the community because it's not accessible. You know, the community is really the one that's missing out, it's not us missing out on the community. It's the community missing out on a real opportunity to see some really amazing performers. This quote from Never Give Up demonstrates the idea of passive exclusion from the community (Hayhoe, 2014). He believes that if the community were more aware of the needs of blind and visually impaired musicians and performers, these individuals would feel comfortable performing, but as of now, they feel excluded. He also indicated that this type of exclusion puts the community at a disadvantage as they are not able to benefit from the wealth of talent that exists from all the members of the community. Based on the comments by my participants, art organizations and the arts community as a whole, have not been especially accommodating to individuals with visual impairments. These sentiments are contradictory to those of the art organizations in Utah. In the following section, I ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 65 discuss how arts organization perceive they are handling accessibility and accommodations for those with disabilities. Current Forms of Accessibility and Accommodations in Utah Through my work at the Utah Division of Arts & Museums, I was able to collect and analyze responses from 32 of our top tier applicants: any submitted grant application is considered public record and therefore I did not need permission to use the information. However, I chose not to use any organization's name or location to maintain a sense of anonymity. These applicant organizations represent a myriad of art forms and organization types including music, dance, theatre, museums, film, and festivals. One of the questions in our grant application asks: How does your organization help people who are differently-abled have more meaningful access to your programming? I analyzed the responses to this question and noted that only 10 of the 32 (about 3%) organizations mentioned anything specific regarding making their events accessible for blind or visually impaired patrons. Of the 10 responses that specifically mentioned blind accessibility, the responses ranged from braille libretti, large print exhibition cards, large print brochures, large print exhibition information, audio tours, braille signage, audio description, large print scripts, large print programs, descriptive audio tours, large braille labels, touch tours, and sighted guide training for individuals experiencing loss of sight. These examples demonstrate that arts organizations are at least somewhat aware of the types of accommodations that could be made for members of the blind and visually impaired community. However, the organizations do not delve into how often they use these accommodations, or how often they are requested. ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 66 Arts Organizations' Perceptions of Accessibility Two of the 10 organizations mentioned engagement with the disability community to elicit feedback and open communication. This type of outreach is important when working with marginalized communities. It is important to hear from the community you are working with rather than assuming what they need or want. One arts center described having a staff member on the Consumer Advisory Committee for the Center for Persons with Disabilities and an arts museum described how they partner with community organizations like the Moran Eye Center and the U of U School of Special Education, the Center of Disability Services, and the Interdisciplinary Disability Studies program. Through these connections, the organization is able to get feedback and assistance from students and faculty. This particular art museum noted that they "assess our braille, audio guides, and overall physical navigation, and make accessibility recommendations." The same organization is also "experimenting with 3D printing of twodimensional images to supplement descriptive and touch tours." The latter organization is engaged in a number of accommodations for disabled patrons, not just those who have a vision problem-they listed a number of services including ADA compliance, memory tours for those with memory loss, closed captioning, assisted listening devices, American Sign Language interpreters, and services for families with autism. Another organization noted they were providing accommodations such as performances for Alzheimer's patients and adults and children with special needs. For blind and visually impaired patrons, the organization partners with the Moran Eye Center and through their partnership with the Utah Library for the Blind, offers braille libretti, which can be checked out free of charge in their lobby. They also invite patrons who are blind or visually impaired to a dress rehearsal of their May performance where they "receive Braille libretti, headsets with ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 67 voice-over describing the staging, and an opportunity to touch costume samples and props." From my conversation with a member of the Moran Eye Center who partners with this organization on this program, the patrons for these events are typically older adults. Since the Moran Center typically works with older adults, this seems like a natural fit. However, their work could extend beyond this demographic if they partnered with other organizations who are targeting young adults and teenagers. The teenagers I interviewed noted a desire to have greater access to art events, thus, more community programs and partnerships could be established, with the Moran Eye Center as a main contributor. Lack of Accommodation for Blind and Visually Impaired Patrons. As a member and supporter of the arts community, I know art organizations in Utah are doing good work and are invested in their community and the well-being of their patrons. It is a bit disheartening to see that only one-third of the organizations I analyzed mentioned any kind of accommodations for blind or visually impaired patrons. Every applicant discussed being ADA compliant in some way, while others acknowledged that they were contemplating new ways to make their events and venues more accessible. A number of organizations discussed accommodations for those with a hearing or physical disability, and a few organizations mentioned accommodations and modifications to their programs and events for patrons on the autism spectrum. It was also interesting to see that a few organizations were also offering bilingual services for their patrons, especially since Utah will be close to becoming a minority-majority state by 2060 (American Progress, 2015). From the data I collected from the one-on-one interviews and the grant application responses from arts organizations across the state, it was clear that there was not a great deal of accessibility or accommodations being made specifically for members of the blind and visually ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 68 impaired community. This particular disability community is being actively and passively excluded through the inactions of arts organizations throughout the state (Hayhoe, 2014). It could be that organizations are not thinking about blind and visually impaired patrons-they may not have encountered this population or they may not have received feedback from any patrons about their lack of accessibility. Perhaps others are just unsure of what they can provide and how to put these strategies in place. Whatever the reason is, organizations should make a more concerted effort to offer some simple ways to make their events and venues more accessible for members of the blind and visually impaired community, because as one of my interview participants stated, "art isn't exclusively for the sighted, and it can be enjoyed by everyone." As Ludwig (2012) noted in her study, the perceptions between the arts organization and the patron accessing that organization were very different. Both Atmos and Never Give Up discussed having accessibility issues at organizations, yet those organizations state that they are making accommodations. Anna noted that she often felt that organizations were accessible but mentioned that she didn't always feel comfortable asking for accommodations. In these situations, Anna was being passively excluded by these organizations. The organizations were not making their accommodations obvious to their patrons, so blind and visually impaired individuals had to "call out" their differences in order to access the event or program. Anna later added that when she went out with her blind friends it gave her the courage to ask, We all try to help each other out. The great thing about going out with a group of blind people is you kind of have more of a mentality of ‘hey, I can go ask' […] you don't feel so intimidated and you have people supporting you. Again, the onus is on the disabled individual to seek out an accommodation since it is not readily available or in a conspicuous area. Anna and other blind and visually impaired arts patrons ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 69 should not have to feel uncomfortable asking for accommodations. The reason that Anna feels uncomfortable asking for accommodations, is because these types of requests are not common. Making a request for accommodations highlights the fact that Anna is different from the majority of the patrons, and it reinforces her differences rather than making her feel connected to the rest of the arts patrons. Lack of awareness on the part of the organization demonstrates that they either do not expect to see many disabled patrons, or that they are ill prepared to make accommodations when requested. Assistive Technology and the Arts Each of the individuals I spoke with used some form of assistive technology to either create their art or to perform daily activities. My original intent behind asking whether they used assistive technology to create art was to understand how they were using these devices to make art more accessible, with the idea that arts organizations could potentially implement these strategies. However, based on the responses I received, my participants noted that they would either bring their own assistive technology with them when attending events or they rely on others to assist them. The most commonly used forms of assistive technology for daily use discussed by the participants were 1) braille and refreshable braille displays, 2) JAWS/Screenreader, and 3) Cellphones (please see Appendix L for an image of refreshable braille display). Braille. Both Anna and Atmos discussed their use of braille and how it was still helpful for them even with their other forms of assistive technology. Because of Anna's and Atmos' visual impairments, they each had a very limited form of sight. For Atmos, large print was a good option for him, but he used braille a lot in school to get through his math class. For Anna, large print was not accessible, so she relied on braille a great deal more, ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 70 It would take me forever to read large print, it would have to be so big for me to read and it would take so long. I grew up reading braille. Doing things with audio can be efficient, but I found it to not be as efficient as braille […] I feel like I have more control over what I'm reading and writing-when I'm in braille I can check over things. This shows that it is important to understand the needs of each individual, since different accommodations need to be made depending on the individual's visual impairment. At the beginning of my project, I assumed braille was not being used as much, but after speaking with Anna and Atmos, I realized braille was still very important. Braille Display and Screen Reader. Atmos described a recent spoken word event he went to where he brought his own accommodations to help him, …Because a lot of times I memorize what I'm going to read beforehand but if I'm getting stuff on the fly there it's a little bit of a harder time to read things I've written, so if I'm going to read something I bring a little braille stick so I can connect it with my phone and just read it. When asked what kind of assistive technology he used he responded with "I use my braille display." Being unfamiliar with this, I asked him to describe it, "It's a little technology strip, like a power cord, but it has a refreshable braille display where it changes the dots depending on what line I'm on." The braille display connects to his phone via Bluetooth and allows him to read what's on the screen. Anna echoed the reliance on her braille note taker, "I use a braille note taker to have my music for band and that's how I write stuff down as well." Anna described that she used a screen reader for her creative writing, as well as for her music classes. Never Give Up noted his use of a screen reader as well. ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 71 Virtual Reality. Although not mentioned by any other participants, Anna shared a story about using virtual reality to access a dance performance, and it would seem from her anecdote that virtual reality could be another form of assistive technology that could become more widespread, I was trying out a virtual reality headset with my Uncle and he had his phone to it and he had some kind of app where you could go into your videos and make it a part of that virtual reality, so you could be watching that video in virtual reality. He pulled up his daughter's dance video and I could actually see the dancers and sort of more of what they were doing than I can when I'm actually there because I don't usually get a seat where I can see very much. Anna was excited at the prospect of using virtual reality to have a more meaningful arts experience. The technology she discussed allowed her to see the dancers and their movements in a clearer way than when she attended in person. Her ability to see the performance could often be hampered by her placement in the audience. The use of virtual reality would not only allow Anna to see more clearly, it could also create opportunities for her to engage with, or participate in the art form itself. Assistive Technology and School. The students at the Utah Schools for the Deaf & Blind talked about their use of the braille note as well, and a few other things like iPads, Bluetooth speakers, and cellphones, but they did not mention that they used any of these forms of technology to create art in the classroom or at home. They did explain that they would use some of them to listen to music, but that was the only specific example. The vocational coach made it possible to create art by providing the art materials and supplies, and by making the projects accessible for the students. ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 72 Conceptualization of Art Part of my research was to understand how the Arts as a field was marketing themselves and how people perceived and defined the arts. From my experience, saying "the arts" often elicits a wide-range of responses-anything from disapproval, excitement, confusion, and indifference. For me, the arts always made me feel inspired and they it always created a space for solace. I know this is not the case for everyone, nor am I saying it should elicit the same response for every person. However, I do believe the arts would benefit from a simple definition that people of all backgrounds could understand, without much explanation. This universal definition would transcend abilities-it would allow all people to grasp the power of the arts, regardless of whether you were blind and visually impaired or sighted. Definition of Art. In order to understand how individuals conceptualized the arts I asked each participant a very straightforward question-"Can you tell me, in your opinion, how you define art?" For the older adults I found that they had more developed answers such as, "It's a different way of learning to communicate with other people." However, the responses from the students at the Utah Schools for the Deaf & Blind were not as composed or detailed. Many of them struggled to answer the question. There were often long pauses as they formulated their responses. Some of the students were not sure how to define art, while others defined art as something you make, something you craft together with glue, or something related to emotions. Due to their hesitancy and difficulty answering this question, I would often ask follow-up questions that were more specific, hoping to elicit more detailed responses. These questions would take the form of inquiries such as "Is art something you make?", "How does art make you feel?", "If someone asked you to describe art to them, what would you say?" These questions did not have the intended effect and the students still struggled often times saying "I don't know." ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 73 One student, Mario, said that he would tell someone that "Art is making with your own imagination." This response reflected his connection to art and creativity-something that I believe is inseparable. For another student, the question about defining art was very difficult. I asked questions about different types of art forms to see if this would help such as, "Do you draw?", "Do you paint?" These questions did yield some answers, but the student was very reluctant to answer the questions and looked frustrated. From this experience I noted that describing and defining the arts was not easy. The students all talked about the vocational coach and her arts and crafts projects, which seemed very structured. Although I was not excited by the idea of the arts and crafts projects created at the school, I do understand that these projects were most likely created to allow the students freedom to learn skills on their own, which is part of their Independent Educational Program for teaching life skills and independent living (Understood.org, n.d.). Each of the three participants who were not associated with the Utah Schools for the Deaf & Blind provided rich, meaningful responses to my arts definition question. Anna defined art as "Something that allows you to create something that expresses you in some way." For Anna, art had a particular function to convey your attitudes, beliefs, and emotions. Never Give Up said, "Art can be anything, it's like with my music. So art for me music wise is I am creating a piece of music that I identify with that I use to create emotions to create feelings in other people. It's a different way of learning to communicate with other people." Never Give Up sees art as something that can elicit a certain response in an individual, and allows people to connect with one another-at least through music. Lastly, Atmos defined art as, "Something that's very creative and can be shared with others." Atmos's response conveyed the idea that art was meant to be experienced by other people; it is tangible enough to be "given" and "received" by one ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 74 another. Each response was different yet had similar sentiments. Each response conveyed the idea that the arts were creative and that whatever was created could be shared-the arts had an extrinsic purpose. I wondered if art had an intrinsic purpose or if its purpose was purely functional? The responses from the students at the Utah Schools for the Deaf & Blind often revolved around art as making something, or art as something you keep or give away to others. When I asked various questions about the role of art in the lives of the participants, the answers shifted to more intrinsic value, B: "It just makes me feel joy. It makes me think about the stuff I've done"; M: "It helps me to learn more-hand eye coordination"; C: "It makes me feel good […] because the making or painting stuff and that helps, it's good for me." Each of these responses conveyed the intrinsic value of the arts. The arts benefited each of these participants in a personal way, whether through emotional value or through improved motor skills. These responses did not place the value of the arts in another person, the value was found within each individual and their connection with the art form. Later on in the interviews, they revealed that creating art had a positive impact for them in their lives. The arts and crafts served a function in their school program, and the impact of those arts projects were understood and appreciated by the students. Types of Art Engagement. Each of the students I interviewed engaged in a particular art form. For the students at the Utah Schools for the Deaf & Blind, the art form they were most engaged with was visual art. One of the students, Clay, played the piano. He discussed how he enjoyed playing piano and wanted to continue playing for the rest of his life. A few of the students ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 75 mentioned that they participated in visual art through the vocational coach's program, while Babygirl practiced drawing for as long as she could remember. She loved to draw and would draw various things, either to convey her feelings or just to convey completely random thoughts and emotions that come to mind. Atmos was also a visual artist, but he engaged with creative writing as well. He conveyed his love of museums-he has been to many different museums and is fond of the ones he has visited overseas noting that they are much more accessible than the museums here in the states. Anna and Never Give Up both engaged in music as their art form of choice. Studies by Baker (2014) and Hye Young et al., (2015), note that blind and visually impaired individuals often play a musical instrument and they derive a great deal of joy from this activity. Both Anna and Never Give Up were actively engaged with music-Anna is in her school band and has been playing for several years while Never Give Up started playing music as a child and has continued to fuel his passion with several degrees in music and a plethora of live musical performances around the community. Conclusion From these interviews, I was able to learn a great deal about the experiences of blind and visually impaired individuals and their interaction with the arts, and their participation in art events in Utah. For a state that has the highest rate of arts participation in the country, we would certainly benefit from ensuring all members of our community are accessing the arts-and this includes individuals with disabilities. The blind and visually impaired individuals I interviewed spoke about their experiences creating art and attending events. It was clear from the data that the arts can be accessible depending on your level of blindness, your age, your ability to travel to events, and your reliance on others to help you experience events. What was also clear to me ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 76 from my analysis was the idea that art organizations were trying to be accessible, but that they need to put more effort reaching out to these underserved populations that are ready to engage and participate, but are unsure if they will be able to. It was refreshing to learn that there were blind and visually impaired individuals who really enjoyed the arts and were ready to be more engaged in the arts community. It was discouraging, however, to hear that some of the experiences were not very positive and that this left a profound impact on the individuals and their desire to engage with a certain venue or event. It was evident there was a feeling of discrimination. In order to create change in the arts community regarding accessibility for those with visual impairments, I asked my participants to share their thoughts on ways organizations can make their programs more accessible. I will discuss these recommendations in the next chapter and in Appendix K. ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 77 Chapter V: Recommendations Introduction Engaging with this research expanded my understanding of blind and visually impaired teenagers and college-aged adults, a group that is normally overlooked and underserved. In this chapter, I will outline my recommendations for various stakeholders who are interested in this topic. I made recommendations from what I gleaned during my interviews regarding ways other organizations and individuals could become more aware of the issue regarding accessibility and those with visual impairments. A visual representation with specific suggestions was created and can be found in Appendix K. Implications It's not hard to believe that nonprofit art organizations are working hard and are doing the most with the limited resources they have in an effort to serve all patrons. When you speak with people who work for art organizations, they are typically passionate about the work they do and believe that it makes a real difference in the community-and they will often mention the various populations and groups they serve or have impacted. Organizations want to ensure that anyone who is interested in their programming has the ability to access their offerings, but they are not always prepared to make accommodations when individuals with visual impairments attend their programs, nor are they being proactive with outreach or services specifically for blind and visually impaired art-minded individuals. In order for the arts to thrive, I believe there must exist a feeling of reciprocity in which those who create and those who consume must share, collaborate, and support one another. How can the arts be truly inclusive when they are actively and passively excluding a particular group ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 78 of individuals? And how, as a society, can we become more engaged with those who are different than us if we do not allow the opportunities and spaces for these individuals to collaborate with us and feel included in our communities? Working with an organization like Art Access was encouraging because their mission speaks to inclusion and aims to make the arts accessible to everyone. When they say everyone, they truly mean "everyone." The program manager, and my supervisor for this research, Elise Butterfield spoke frankly with me about the lack of access for blind and visually impaired arts patrons in Utah. Through her work with Art Access, she has seen for herself the lack of access and accommodations that are available and she was curious to see what would come from my research findings and recommendations. I am eager to share my recommendations with Art Access and with other arts organizations across Utah, including my own organization, which acts as a major funder to over 200 arts organizations across the state. These recommendations were meant to be a first step. I wanted to help organizations evaluate the state of their programs and their venues so they could think more deeply about how they could make accommodations and increase access for visually impaired patrons. It is my recommendation that organizations engage with blind and visually impaired patrons and ask them for feedback as they begin to make changes. Each of the interviews I conducted with my participants was an intimate moment for the individual to share their experiences and their thoughts about how they could more deeply engage with, and participate in, the arts landscape here in Utah. It would be advantageous for arts organizations to understand that these recommendations come from a place of hope, interest, and of wanting to belong. These are all values that the arts community embody, so it would be fitting for them to embrace these ideas, even if they feel unsure or overwhelmed. ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 79 The ideas put forth in this thesis are meant to create a space for reflection, a space where organizations can take the time and be honest with themselves and their community. Many of the recommendations that will be discussed will be easy to implement. Some organizations may already be doing these things, or are considering implementation in near future. These recommendations are meant to bring forth change, one small step at a time. There were no major recommendations for changes to local or federal policy-those ideas did not come up in any of my discussions, and I believe that we have good policies in place already, they are just not being enforced nor are they really understood. The participants of this project were eager to share their ideas and shared with me that they would be excited to see some of their ideas implemented. Some of them felt that their recommendations would not be embraced, but they were still happy to share their thoughts and were hopeful that my work, and the work of others in this field would help bring forth change. It was with my participants in mind that I wrote these recommendations, knowing that they deserve the right to access and engage with the arts in a way that works best for them. Because of my participants I am more thoughtful in my own planning and event logistics. Knowing that the individuals I interviewed are interested in engaging more with the arts inspires me to find ways to be more accessible. Though I was guilty of not providing accommodations in the past, I am making a conscious effort to be more inclusive. I know this will be an imperfect process, but it is an extremely important process that I intend to engage with and will recruit others in my own organization to think more broadly about the patrons they serve. I have already heard some interesting discussion coming from our staff members about making our Chase Home Museum more accessible for those with visual impairments. ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 80 Though there is much research being done around blind and visually impaired individuals in the arts, (mostly regarding children and adolescents) I could not find any scholarly research being conducted in Utah. I believe this research could encourage others who are interested in understanding how blind and visually impaired individuals understand the arts, and how they could engage in the arts in Utah. This research could be helpful for other researchers, students, blind and visually impaired individuals, art organizations, and many others. Research around this topic has not been conducted before in Utah, and although I was not able to conduct a true ethnographic project, the things I learned from this project were invaluable and I am cognizant of the fact that these recommendations might make people uncomfortable. My intentions were not to make anyone feel badly, but to educate and raise awareness around this issue. The more society comes to understand the blind and visually impaired individuals in their community, the community can become more vibrant and inclusive-and everyone can truly feel like they belong in that community. This work was meant to create these same feelings within the arts community, a community that often accepts those who feel a lack of belonging, who lack a sense of place, or who feel othered by the community around them. Recommendations As part of my research, I asked two questions that related to accessibility and accommodation: 1) If you were talking to the director of an art festival what would you say to them about their level of accessibility or how they could make things more accessible for people? and, 2) How can arts organizations make their programming more accessible for people who are blind? I asked these specific questions because it allowed the participants to tell me what would work for them rather than me making assumptions about what they would want or need. Of the eight participants, only four of them were able to give me some suggestions regarding ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 81 how they would like to have accommodations. Their feedback was summarized and included in a one-sheet (see Appendix K) that will be shared with Art Access and other art organizations across the state who are interested in both assessing their current accessibility levels, and learning new ways to increase accessibility for their patrons. Based on the interviews I conducted with my participants, I learned that each person had a different request or suggestion for accessibility and accommodation based on their age, their previous experiences with arts events, and their specific type of visual impairment. Although each person had different experiences and preferences, cumulatively, they all expressed the desire to have things more easily accessible and to make it clear to those with visual impairments that they are welcome to the event or event venue and that the organization would be willing to make accommodations if requested. The participants all echoed the idea that they wanted to access more art events in the community, whether by themselves, with their family and friends, or through their school. I heard from two different participants that they did not hear about art events through traditional marketing like newspapers, websites, flyers around town, or social media-they most often found out about events through friends. One reason for this is because these individuals are not receiving any kind of outreach from organizations. I asked if they had heard about events from the Project STRIVE group and I was told that they didn't receive any information about art events from this group. Since I am not sure if the director of Project STRIVE is sharing this information with her group, I suggest that Project STRIVE reach out to some of the arts organizations and sign up for e-newsletters and social media so they can share this information with their group. I recommend that art organizations do specific outreach to these types of groups-both through emailing word documents of events to the directors of groups such as Project STRIVE, the Utah State Library for the Blind, the National Federation of ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 82 the Blind-and by calling or posting to the social media pages of these organizations. If even one or two blind people from these groups finds out about these events, they will share this information with others, as my participants told me they hear about events through word-ofmouth from friends (sighted and blind) and family. It would also be useful for some of these organizations to collaborate with the Utah Schools for the Deaf & Blind to see if they would be interested in any kinds of art education or art integration projects. Several large organizations in the state receive POPS (Professional Outreach Programs in the Schools) funding through the Utah State Legislature, which must be matched by the organization. This funding charges these organizations to reach every school district with "arts learning experiences for students and teachers" within a 3-year rotation (Utah State Legislature, 2015). Current POPS organizations include well-known organizations such as Utah Symphony | Utah Opera, SpyHop, Tanner Dance, and Ballet West, among others. The students I spoke with at the Utah Schools for the Deaf & Blind acknowledged that they would participate in art classes and workshops at the school if they were available. Art organizations could engage in qualitative and quantitative research to understand the demographics of their community and to solicit feedback from the various groups they are trying to serve. An organization could conduct focus groups, or conduct town hall meetings with some of the organizations I listed earlier to get comments and suggestions from blind and visually impaired people and their experience with various organizations in the community. The organizations would have to be open and receptive to the feedback as some of it may be discouraging, but making an effort to actually speak with blind people and hear their ideas can help build relationships. However, the organizations must be careful not to take the feedback and ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 83 forget to implement it, as as this could breed mistrust with the community they are trying to serve. Specific suggestions for ways to increase accessibility can be found in Appendix K. Limitations Recruitment While I had great expectations to interview around fifteen people, I was only about to interview eight. This provided me with a good amount of data, but I was disappointed that I could not interview more people. I also originally anticipated conducting interviews with individuals living in various counties across the state in order to get a more comprehensive view of the experiences of people living in more isolated and rural areas of Utah. I tried to connect with people in this area through the contacts I made in the blind community, but I was not able to make any connections with people living in Central or Southern Utah. All of the interviews I conducted included participants from Salt Lake and Weber County. If I had more time to work on this project, I would like to have traveled to more rural parts of Utah to compare the experiences of blind people living in those areas compared to those living in more Urban areas, with greater access to arts opportunities. I was also unable to get a range of ethnic and socioeconomic diversity with regards to participants for this project. Also, while I was able to glean some valuable insight into how arts organizations are providing accommodations, I was unable to conduct interviews with staff members of these organizations. This would have provided information regarding how the organization felt they were providing accommodation and how they could increase these offerings. It would also provide an interesting contrast to the data collected from the blind and visually impaired participants, especially given the fact that most of the staff at these organizations are sighted individuals. Given the time and the geographic ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 84 constraints of this project, I believe I accomplished a great deal, but I would have liked to capture more participant interviews and stories. Use of Art Rhetoric I noticed the rhetoric used by those in the arts community may not always translate to those who are not entrenched in it. This became apparent when I was recruiting for participants. As I spoke with people in the community about my project I often heard follow up questions about my project. People would ask me what kind of art I was interested in, or how I was defining the arts so that they could pinpoint people they think could participate. I found this to be really interesting since I see art as very inclusive of many different creative forms. When I went to the Project STRIVE group to recruit participants, I had one individual say that they did graphic design and computer media, but they didn't think this was considered an art form. They then proceeded to show me some beautiful, computer generated drawings and images that were created using software that assists individuals with visual impairments to create art work. I assured the individual that they created art, but the individual decided later on not to participate. Some of the students at the Utah Schools for the Deaf & Blind also struggled when I asked them what type of art they created. On several occasions, I had to provide more specific examples of art forms for them to choose from. I think those working in the arts need to do a better job explaining how we define arts, making it more inclusive and less "elitist" as it is typically perceived. Many people are creative and engage in the arts but don't always think so because they assume the arts encompasses only a few things such as fine art, ballet, classical music, and professional theatre. ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 85 Future Research I have been contacted by a few individuals who heard about my project and are interested to contribute with their personal stories. I was not able to conduct interviews or speak with these individuals because of time constraints and the IRB approval process, but I have discussed the idea of collecting these stories with Art Access in order to continue the dialogue that has been created through this project. The potential for future research around this topic is abundant. More research could be done with the various organizations that I mention in my paper, including the Project STRIVE group and the Moran Eye Center. Each of these organizations are working with different segments of the blind community-younger individuals looking to learn independent life skills, and older adults who are learning to cope with their visual impairments, respectively. Each of these organizations would be willing to work with arts organizations and community groups in Utah in order to help dispel myths and create common ground. More intensive research could be done in regard to my research question, including interviewing more participants and collecting data through a variety of means besides semi-structured one-on-one interviews. Other research could delve more deeply into the types of visual impairments that exist and how each of those impairments correlate with arts participation and needs for accessibility and accommodations. Although I asked participants about their type of visual impairment, I was not able to connect their impairment with the level of engagement and participation. I think this could be very valuable in terms of understanding the differences in visual ability and how different abilities necessitate different accommodations. It is important to understand that blindness is not "one size fits all." There are various levels of blindness and different types of visual impairments, and the type of accommodation needed for each person could vary greatly. ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 86 If there are other people out there who are interested in pursuing this type of research, I would preface the journey by stating that it will be an interesting exploration of people's experiences, experiences that are so vastly different from your own, unless you are also blind or visually impaired. Since I do not have any real visual impairment aside from wearing glasses, I was not able to relate to any of the experiences of my participants, and this was quite difficult. Now that I have done this work, I am better able to put myself "in their shoes" so to say, and I have a new perspective when I attend events and festivals or go to museums. In order to really learn from this experience and from this practice, it would be wise to immerse yourself in as much data and research as possible surrounding the topic you would like study. I would also state that one must be ready to constantly engage with people via email, phone calls, and in-person meetings. For the amount of outreach I did for this project, I was surprised with the low number of participants I was able to secure. Even with the prospect of gift cards, I was still only able to secure a few participants, and there was a constant stream of communication between myself and the participant as blind and visually impaired people are not always tied to their emails and text messages the way sighted people are. Often times, individuals who are visually impaired will need more time to communicate with you, especially if you are doing most of your communication via email. Although most visually impaired individuals utilize screen reading software, accessing emails is not always easy, so give yourself adequate time to communicate. Also, be thoughtful in how much information you are sending in an email, including email text and attachments. The screen readers that blind and visually impaired individuals utilize often are equipped with an audio component that will read contents of emails and documents aloud. Depending on the length of the email and auxiliary materials, this could take a long time for someone with a visual impairment to get through and could delay ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 87 your communication and research time. These types of tasks take more time for blind and visually impaired people, so you must be willing to be flexible with your scheduling. It would also be helpful for anyone embarking on this research to practice compassion and understanding. I believe it is hard to talk about a disability, especially since society has not cast the most positive light on people with disabilities, and your participants may feel uncomfortable talking about certain situations or experiences, and one must be cognizant of these factors. Although I knew I was doing this research for a good cause, I did realize that my participants might discuss situations where they felt discriminated against, so I tried to be supportive while not pushing the participant to talk about anything they were not comfortable with. At the end of my interviews, each participant seemed fine and they were happy to have shared those thoughts and experiences, and I hope I have done them justice with this project. Learning Objectives Through this project, my own professional development was strengthened in the areas of: 1) Community Organizing, 2) Communication Skills, and 3) Collaboration. Community Organizing Throughout my work on this project, I conducted qualitative research through interviews with members of the blind and visually-impaired community. I was able to create relationships with several prominent members of the blind and visually impaired community here in Utah, and also, create relationships with some of the older participants I interviewed. Because of my connection to the arts, I have committed myself to sharing information about art programs and events with the people I interviewed, and am working to create opportunities for my own organization to increase its accessibility. I did this work so that I could create a safer, and more ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 88 welcoming space for the blind and visually-impaired community. I would also like to make accessibility a less daunting concept for art organizations across the state. Communication Skills A major component of this project was communicating effectively with various stakeholders in order to garner participation in my research, but also, to create a safe space where community members felt they could voice their honest opinions and ideas about the role of the arts in their lives, how they conceptualize art, and how they access and engage with programming in Utah. This project presented several opportunities to conduct meetings and interviews as part of my research. I had to be cognizant of the different individuals I was meeting with and their familiarity and comfort with the arts, especially talking about the arts. I also had to think about how I discussed my research project with various groups-community organizations, teenagers, parents, and adults-and how my communication style would be perceived by each group. I learned some strategies regarding how to communicate effectively with people who are blind or have visual impairments, these being sending files as Word documents rather than PDFs as the Word documents can be read aloud with software and the PDFs cannot. I also learned if I was emailing something that I did not need to worry about font size or color as the screen reader would be used most often by those who are blind or visually impaired. Another thing I learned was if I wanted a piece of paper signed, I should print it out and fold it at the spot where it needs to be signed so that the individual could touch this and know where to put their signature. It was exciting to learn these things as I was not familiar with any of these concepts and I feel I've gained a greater understanding of communication within the blind and visually impaired community. ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 89 A different aspect of communication that has emerged from this research is the idea of presenting a session around arts and accessibility at the Mountain West Arts Conference, a statewide arts conference hosted each year by my organization, the Utah Division of Arts & Museums. This is something that was suggested to me by Elise at Art Access; a session where I can discuss my findings and recommendations and where other leaders in the field can discuss their experiences and recommendations. The potential to reach arts administrators, educators, and artists from across the state is extremely exciting, and I believe I could give my research a literal voice, sharing with others the remarkable things I have learned through this project. Learning effective communication skills is an essential part of this work and is a skill I continue to improve upon in both my career and my personal life. Collaboration Working with members of the blind and visually-impaired community and various community organizations requires an extraordinary amount of collaboration-including working across various sectors, engaging different cultural communities, and communicating with other stakeholders in a community. In order to be open to what my research data tells me, I had to become vulnerable and allow the various groups I am working with to teach me what I did not know, and to shape my current tacit understanding around how blind and visually-impaired people understand the arts, and how they are engaging with existing programming throughout the state. This was especially challenging as I realized that even after the extensive research I had done, I did not know much about how blind and visually impaired people conducted their lives, or how they talked about themselves. It was an eye-opening experience learning from my participants, especially when one of my participants said "I actually learned more about my own thoughts about the arts." ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 90 Another aspect of collaboration is an idea that is still in its infancy, but could really make an impact in the state. In my discussions with Elise at Art Access, we have talked about the potential for an accessibility advisory committee in Salt Lake City, something that could help create more awareness around this issue and could involve multiple stakeholders in the community. Elise creates a lot of programs through her work with Art Access and she is invested in making the arts more accessible for all Utahans. Elise's idea to form an accessibility advisory committee would allow many voices to be heard across various sectors and populations. Although the committee does not exist, Elise invited me to be a part of this group, and I am looking forward to its creation and implications for the state of arts access in Utah. I am grateful that I am already working in the arts, and have been for the past decade. I enjoy my work at the Utah Division of Arts & Museums and am hopeful to continue working here for as long as I am able to. Through this project I have learned a great deal about arts accessibility for blind and visually impaired individuals, but I realize I still have much more to learn. I hope to become more active in this topic and would like to take on an additional role with my organization where I can facilitate accessibility discussions and recommendations for the arts organizations we serve across the state. Personal Reflection This project meant more to me than I could have imagined from the onset. Originally, I was working on a different project, but when it came time to really finalize my idea, I completely changed directions and embarked on this journey-one that I was unsure I could really understand. I realized that I always talked about the idea of the arts being accessible to everyone, that all individuals should be able to go to art events or take art classes, but I never thought about who was included when I said "everyone." I thought about people from rural areas, ethnic ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 91 minorities, people from low socio-economic backgrounds, people without transportation, the list goes on-but I never really thought about those with visual impairments until I read an article about it and it changed my outlook on who was being included. I wanted to educate myself, and others, about the experiences of blind and visually impaired individuals, and I wanted to prove that these individuals were ready to participate in the arts, and that they should feel welcomed by the arts community. Before I engaged in this research, I had never met a blind or visually impaired person while working in the arts, nor have I known a friend, family, or colleague who was blind or visually impaired. I was able to learn a great deal from the people I interviewed. Through this work, I realized that I was guilty of some of the things my participants spoke about. However, my engagement in this project has given me the opportunity to really analyze my preconceived notions of what an arts patron could look like, including what types of accommodations could be made for performers, artists, and patrons. Just from the informal conversations I had with blind individuals, I realized this was a group of people that I had never interacted with in the ten years I've been working in the arts. From the interviews I conducted, I realized the arts community was not doing a great job reaching this population-our marketing and outreach was not getting through to them and so we were missing a valuable segment of the community that was interested in engaging with us. I learned about blindness and visual impairments and how they affect an individual's ability to conceptualize the arts. I learned that visual impairment has an effect on an individual's selfperception, social skills, educational attainment, ability to form relationships, and life skills. Accessing the arts may not be the most important thing for a blind person, but it does have a profound impact on their lives when they are truly passionate about the role of the arts in their ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 92 lives. I have come to realize that lack of sight does not equal lack of interest in the arts. I was unsure if blind or visually impaired individuals would engage with the arts, but from the interviews I conducted I learned that they do enjoy the arts and are eager to participate more and have a more active role. I can't say it enough: everyone should have access to the arts-access that truly enables them to engage with the arts in a meaningful way. From this project I have come to understand what it means to be a community leader. Although I have not created any new policies or participated in any community activism, I have embodied leadership characteristics by engaging with this work. Throughout this process I have learned to be uncomfortable-I have reached out to people I difd not know and engaged them in discussion around a topic I was still learning about. I have had to defend my reasoning for this project and had to learn to be open and honest about how I personally have been excluding blind and visually impaired individuals and didn't even realize it. One of my interview participants said that it was up to people like us to ask questions and create change. I believe these are the types of experiences that engender community leadership-it's not something I can learn from a two-day seminar, it's something that is absorbed and reflected through thoughtful engagement and deep introspection. It is not easy to admit you have made mistakes, or that you continue to make them. It is not pleasant to hear disparaging remarks about an arts community that you are so invested in. However, I realized it is even harder to sit back and act as though everything is alright. In order to create change, one must come to grips with feeling vulnerable and must make strides to make things right. This was my intention from the start of this project, and I believe that arts organizations will make changes, however small to start, that will allow for more inclusivity. ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 93 The guidance and encouragement I received from Art Access was truly remarkable. I knew they were working to make the arts accessible to everyone, but I didn't realize the extent to which they embodied their mission. As I visited with Elise I had the opportunity to talk with the staff and explore the rotating exhibits they had on display. I learned so much from Elise and her experiences engaging with organizations and groups in Utah. Her perspective and insight were so crucial to my success with this project. I believe that partnering with Art Access was a greater benefit for me than it was for them, but I know that they are excited to see my recommendations and are looking for ways to collaborate with me and my organization more in order to strengthen the capacity for increased accessibility for all Utahans, regardless of ability. Conclusion My belief that the arts are important has been strengthened through my work on this project. Even for those who are limited in their visual ability, the arts play an important role in their lives, and the individuals I interviewed supported my beliefs that the arts should be accessible to all. Through this project I have detailed how eight individuals conceptualized and engaged with the arts in Utah. I discussed how the experiences of those with visual impairments differed based on a variety of factors. In the end, I learned that some art organizations in Utah are taking steps to make their programs and events more accessible, but they can certainly do more. The individuals I interviewed discussed how they experienced different art events and provided their personal suggestions for ways the arts could be more accommodating for those with visual impairments. I am thankful that my participants were so honest about their experiences and recommendations. With their input, and the assistance of Art Access, I believe we can begin to create change around this issue and can create a more inclusive, welcoming space for anyone interested in engaging with the arts here in Utah, whether they are residents or visitors, and ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 94 regardless of their visual ability. I believe that art should not be exclusively for any group or population-the arts should be democratized, and anyone interested in participating should be welcomed and should feel comfortable engaging with the arts, regardless of the art form or event type or location. The arts can be, and should be, accessible to everyone who wishes to access it. This project is one small step towards making that idea manifest. ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 95 References American Federation for the Blind. (n.d.). Statistical snapshots from the American Federation for the Blind. Retrieved from http://www.afb.org/info/blindness-statistics/2. Arndt, K., Lieberman, L., & James, A. (2014). Supporting the social lives of adolescents who are blind: Research to practice. The Clearing House, (87), 69-74. Retrieved March 9, 2017. Art Access. Mission & History. Retrieved from: https://accessart.org/about-art-access/art-accessutah-mission-and-history Baker, D. (2014). 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Discovering 'experience-ables': Socially including visually impaired people in art museums. Journal of Marketing Management, 26(7-8), 749-769. doi:10.1080/02672571003780155 Wolffe, K., & Sacks, S. Z. (1997). The lifestyles of blind, low vision, and sighted youths: A quantitative comparison. Journal of Visual Impairment & Blindness, 91(3), 245-57. Zebehazy, K. T., & Smith, T. J. (2011). An examination of characteristics related to the social skills of youths with visual impairments. Journal of Visual Impairment & Blindness, 105(2), 84-95. ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 101 APPENDIX A Interview Guide/Questions for Teenagers (Ages 13-17) 1. Tell me about the classes you are taking this year. 2. How old are you? 3. How long have you lived in Utah? 4. In what county do you currently live? 5. What do you like to do for fun? 6. Do you create art of any kind? Why? 7. In your opinion, what makes something art, how do you define it? 8. How would you describe the role art plays in your life? 9. How do you find out about art events that are happening (in your community)? 10. When you find out about an art event you would like to attend, how do you decide whether or not you will attend? 11. What types of events do you typically attend: theatre, music, dance, visual art, public art, etc.? 12. Tell me why you attend these events over other events? 13. Who do you typically attend art events with? 14. Tell me about your experience at a recent event from beginning to end? 15. Could you give me an example of an event that felt inclusive and accessible? a. Conversely, could you give me an example of an event you attended that did not feel inclusive or accessible? 16. Do you use any kind of assistive technology to access or engage with art? a. If so, how does this help the experience? 17. If you were talking to the director of an art festival, what would you say to them about the level of accessibility of their event? 18. Do you feel that arts programming in Utah is accessible to the blind and visually impaired community? 19. What do you think arts organizations can do to make their programming more accessible? 20. What other thoughts would you like to share about your feelings around the arts? ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 102 APPENDIX B Interview Guide/Questions for Adults (Ages 18+) 1. Tell me about your educational background. 2. How old are you? 3. How long have you lived in Utah? 4. In what county do you currently live? 5. What do you like to do for fun? 6. Do you create art of any kind? Why? 7. In your opinion, what makes something art, how do you define it? 8. How would you describe the role art plays in your life? 9. How do you find out about art events that are happening (in your community)? 10. When you find out about an art event you would like to attend, how do you decide whether or not you will attend? 11. What types of events do you typically attend: theatre, music, dance, visual art, public art, etc.? 12. Tell me why you attend these events over other events? 13. Who do you typically attend art events with? 14. Tell me about your experience at a recent event from beginning to end? 15. Could you give me an example of an event that felt inclusive and accessible? a. Conversely, could you give me an example of an event you attended that did not feel inclusive or accessible? 16. Do you use any kind of assistive technology to access or engage with art? a. If so, how does this help the experience? 17. If you were talking to the director of an art festival, what would you say to them about the level of accessibility of their event? 18. Do you feel that arts programming in Utah is accessible to the blind and visually impaired community? 19. What do you think arts organizations can do to make their programming more accessible? 20. What other thoughts would you like to share about your feelings around the arts? ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 103 APPENDIX C Email to Adult Participants Email to participants 18+: Hello, my name is Racquel Cornali and I am currently pursuing my graduate degree in community leadership at Westminster College. As part of my final thesis project I will be conducting one-on-one interviews with a community which I wish to learn more about. My research question is: How do blind and visually impaired youth understand/define art and how do they access current arts programming in Utah? I am reaching out to you because I would like to know if you would be interested in participating in this study. Your participation would include being interviewed by me and my findings would be published in my research paper. Your participation would be completely voluntary and you can withdraw from the study at any time. I would like to conduct at least one interview as well as a follow-up interview in case new ideas/questions come up. The interview should take no more than an hour and can take place in a location that feels comfortable to you-a community center, library, etc. Please let me know if you would be interested in participating, and if you are available for an interview any time between January 1-December 31, 2017. I am happy to work with you to find a mutually convenient date, time, and location. If you have any questions about any of this, please feel free to contact me at: [e-mail]. Thank you for your time. Best, Racquel ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 104 APPENDIX D Email Script for Youth Participants (13-17) Hello, my name is Racquel Cornali and I am working on my graduate degree at Westminster College. As part of my final project I would like to do some research around how blind and visually impaired youth are currently accessing the arts in Utah. I am reaching out to you because I would like the chance to interview you as part of this research. If you agree, your interview and the information I get from the interview will be published in my final paper. I want you to know that your participation is voluntary-you do not have to do this. Also, if you decide to do this, you can decide at any time that you no longer want to participate, with no penalty to you. I would like to do an interview with you that should take no more than 1 hour, and you can choose the location that works best for you. I may need to contact you again after the interview in case I have any other questions. I will also contact you so that you can read the interview transcript to make sure you are OK with everything that was recorded. Because you are under 18, you will need to receive permission from your parent or legal guardian to participate in this study, which means they will need to sign a consent form, which I can give them. Please let me know if you would be interested in participating, and if you are available for an interview any time between January 1-December 31, 2017. If you have any questions about any of this, please feel free to contact me at: [e-mail]. Thanks! Best, Racquel ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 105 APPENDIX E Email to parents/legal guardians Hello, my name is Racquel Cornali and I am currently pursuing my graduate degree in community leadership at Westminster College. As part of my final thesis project I will be conducting qualitative research with a community which I wish to learn more about. My research question is: How do blind and visually impaired youth understand/define art and how do they access current arts programming in Utah? I am reaching out to you because I would like to know if you would be interested in participating in this study. Your participation would include being interviewed by me and my findings would be published in my research paper. Your participation would be completely voluntary and you can withdraw from the study at any time, with no penalty to you. I would like to conduct at least one interview as well as a follow-up interview in case new ideas/questions come up. The interview should take no more than an hour and can take place in a location that feels comfortable to you-a community center, library, etc. Because you are under 18, you will need to receive permission from your parent or legal guardian to participate in this study, which means they will need to sign a consent form, which I can give them. Please let me know if you would be interested in participating, and if you are available for an interview any time between January 1-December 31, 2017. If you have any questions about any of this, please feel free to contact me at: [e-mail]. Thank you for your time. Best, Racquel ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 106 APPENDIX F Verbal Script for Recruiting Youth Participants (Ages 13-17) Hi, my name is Racquel Cornali and I am a graduate student at Westminster College. I am here today because I am interested in learning about how blind and visually impaired youth define the arts, and how they are accessing arts programming in Utah. In order to do this, I would like to do some in-person interviews with youth ages 13-17 who identify as blind and visually impaired. I would like to interview people who are interested in the arts, but even if you don't do anything in the arts, you can still participate in the interview. If you are interested in doing this, I will meet with you to go over all the details of how this will work. I will also work with you to find a location for the interview that is convenient for you. Also, because you are considered a minor, I will need to get permission from your parent or legal guardian before you can participate. If anyone is interested in doing this, please let me know. I can give you my contact information so you can reach me when you are available. Also, if you would like to think about this more, or talk with your parents before you decide, that's OK too, I can still give you my contact information and you can contact me if you decide this is something you want to do. Thanks for letting me talk with you-I am excited to do this research and I hope you are interested in sharing your thoughts and ideas with me so that we can make the arts in Utah more inclusive and accessible for everyone! ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 107 APPENDIX G Verbal Script for Recruiting Adult Participants (Ages 18-23) Hi, my name is Racquel Cornali and I am a graduate student at Westminster College. I am here today because I am interested in learning about how blind and visually impaired adults aged 1823 define the arts, and how they are accessing arts programming in Utah. In order to do this, I would like to do some in-person interviews with individuals ages 18-23 who identify as blind and visually impaired. I would like to interview people who are interested in the arts, but even if you don't do anything in the arts, you can still participate in the interview. If you are interested in doing this, I will meet with you to go over all the necessary details. I will also work with you to find a location for the interview that is convenient for you. If anyone is interested in doing this, please let me know. I am happy to provide my contact information so that you can reach me when you are available. Also, if you would like to think about this more before you agree today, I can still give you my contact information and you can contact me if you decide this is something you want to do. Thanks for giving me this opportunity to meet with you. I am excited to embark on this research and am really interested in what you have to say. I am also really excited to be able to give you a platform where you can share your thoughts and ideas with the larger community. It is my hope that your feedback will help arts organizations in Utah create more thoughtful, inclusive, and accessible programs. Thank you. ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 108 APPENDIX H Poster for Recruiting Participants Study Regarding Blind and Visually Impaired Youth Accessing Arts Programming in Utah As part of a graduate school research paper, I am interested to know how blind and visually impaired youth understand and access arts programming in Utah. This is important because the arts are considered a public good, which means all individuals/communities should have access to events and programming. It is important to understand how the blind and visually impaired community accesses these programs, and we hope to discover ways that arts organizations can make their programs more accessible. The purpose of this study is to interview 10-15 teenagers and college-age adults (individuals between the ages of 13-23) to determine how they: (1) Understand and utilize art, and (2) Access arts programming across the state. The study will involve one-on-one interviews. There will be at least one interview per participant, but I may need to contact you again to clear up any questions I have after the interview is over. Although there may not be a direct benefit to the participants, you will contribute to the discussion around access and inclusion in the arts. Your story could help organizations create programming that is more inclusive. There will be no compensation for participation in this study. Participants are volunteering to participate in this study and understand they can withdraw from the study at any time. The data gathered from this study will be published in a culminating graduate school thesis and findings will be shared with a community organization to help arts organizations create more accessible programming. If you have questions, or are interested in this opportunity, please contact me: Racquel Cornali, [e-mail] ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 109 APPENDIX I Westminster College Institutional Review Board (IRB) For the Protection of Human Subjects Form D Consent Form for Adults Thank you for agreeing to participate in this study, which will take place from January 1, 2017December 31, 2017. This form details the purpose of this study, a description of the involvement required and your rights as a participant. The purpose of this study is: - To gain insight into how blind and visually impaired college-age adults (18-23) understand the arts, and access arts programing in Utah. The benefits of the research will be: - To better understand how blind and visually impaired college-age adults understand and use the arts. Help arts organization create more inclusive and accessible programming. The methods that will be used to meet this purpose include: - one-on-one interviews You are encouraged to ask questions or raise concerns at any time about the nature of the study or the methods I am using. Please contact me at any time at the email address listed a below: [e-mail]. Our interviews will be audio recorded to help capture accurate insights in your own words. The tapes will only be heard by me for the purpose of this study. You will have a chance to review the transcript of the interview to ensure accuracy. If you feel uncomfortable with the recordings, you may ask that it be turned off at any time. You also have the right to withdraw from the study at any time. In the event you choose to withdraw from the study, all information you provide (including all files containing audio recordings, transcripts, and notes) will be destroyed and omitted from the final publication. ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 110 Insights gathered by you and other participants will be used in writing a qualitative research report, which will be read by my professor and presented to the MACL cohort. An executive summary will also be drafted that will outline critical findings that can be used to inform arts organization across Utah around more inclusive and faceable programming. Though direct quotes from you may be used in the paper, your name and other identifying information will be kept anonymous. By signing this consent form, I certify that I ______________________________ Print Full Name Here agree to the terms of this agreement. _____________________________ _________________ Signature Date ________________________ ______________ Signature of Co-investigator Date If you have any questions about this study or wish to withdraw, please contact the primary investigator: Dr. Jamie Joanou 801-832-2485 If you have any questions regarding your rights as a research participant, please contact the Institutional Review Board: Chair name Sheryl Steadman 801.832.2164 ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS 111 APPENDIX J Westminster College Institutional Review Board (IRB) For the Protection of Human Subjects Form E Assent Form for Minors You have been asked to participate in a research study called: How blind and visually impaired teenagers (ages 13-17) understand/define the arts and how they access arts programming in Utah. I am interested in learning about how blind and visually impaired teenagers define the arts, and how they are accessing arts programming in Utah. In order to do this, I would like to do some inperson interviews with teenagers who identify as blind and visually impaired. If you are interested in doing this, I will meet with you to go over all the details of how this will work. I will also work with you to find a location for the interview that is convenient for you. The study has been explained to you by: Racquel Cornali. You don't have to participate if you don't want to, and you can quit at any time, with no penalty to you. All of your information will be kept private, which means that your name will not be used. If you want to participate, please sign your name below and write the date next to your name. Signature of Participant Date Signature of Witness Date ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS Signature of Co-Investigator 112 Date If you have any questions about this study or wish to withdraw, please contact the primary investigator: Dr. Jamie Joanou 801-832-2485 If you have any questions regarding your rights as a research participant, please contact the Institutional Review Board: Chair name Sheryl Steadman 801.832.2164 ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS APPENDIX K Recommendation One-Sheet for Arts Organizations 113 ART ACCESS BLIND & VISUALLY IMPAIRED TEENS & ADULTS APPENDIX L Image of Refreshable Braille Display "Refreshable Braille Display" by George Williams is licensed under CC BY 2.0 114 APPROVAL of a thesis/project submitted by Author(s): Racquel Cornali School Department: MACL Title of Thesis: Art Accessibility for Blind and Visually Impaired Teenagers and College-Age Adults in Utah The above named master's thesis/project has been read by each member of the supervisory committee and has been found to be satisfactory regarding content, English usage, format, citations, bibliographic style, and consistency, and is ready to be deposited and displayed in the Westminster College-Institutional Repository. Chairperson, Supervisory Committee: Jamie Joanou Approved On 5/8/2017 1:58:38 PM Dean, School: Dr. Melanie Agnew Approved On 5/21/2017 11:06:55 AM STATEMENT OF PERMISSION TO DEPOSIT & DISPLAY THESIS IN THE INSTITUTIONAL REPOSITORY Name of Author(s): Racquel Cornali School Department: MACL Title of Thesis: Art Accessibility for Blind and Visually Impaired Teenagers and College-Age Adults in Utah With permission from the author(s), the staff of the Giovale Library of Westminster College has the right to deposit and display an electronic copy of the above named thesis in its Institutional Repository for educational purposes only. I hereby give my permission to the staff of the Giovale Library of Westminster College to deposit and display as described the above named thesis. I retain ownership rights to my work, including the right to use it in future works such as articles or a book. Submitted by the Author(s) on 5/6/2017 2:41:51 PM The above duplication and deposit rights may be terminated by the author(s) at any time by notifying the Director of the Giovale Library in writing that permission is withdrawn.