Arts Career Outcomes and Opportunities for Americans with Disabilities

Arts Career Outcomes and Opportunities for Americans with Disabilities A Qualitative Study Carol J Gill Carrie Sandahl July 8, 2009 Funded by: National Endowment for the Arts VSA Arts Principal Investigator: Carol J Gill, Ph.D., Department of Disability and Human Development, University of Illinois at Chicago Carol J Gill, Ph.D is an Associate Professor in the Department of Disability and Human Development at the University of Illinois at Chicago, and serves as Director of Graduate Studies for the Interdisciplinary Ph.D Program in Disability Studies Her formal training is in clinical, developmental, and research psychology Her research interests include disability identity development, health service experiences of women with disabilities, disability bioethical issues, and “disability culture.” She has served as Principal Investigator of multi-year research projects funded by the U.S Department of Education, the National Endowment for Arts, and the National Institutes of Health She teaches advanced graduate courses in disability studies, ethics, and qualitative research Co-Investigator: Carrie Sandahl, Ph.D., School of Theatre, Florida State University, and Department of Disability and Human Development, University of Illinois at Chicago Carrie Sandahl will begin her position as an Associate Professor at University of Illinois-Chicago in the Department of Disability and Human Development in the fall semester 2009 Prior, she was a faculty member for eleven years in Florida State University’s School of Theatre Her research and creative activity focus on disability and gender identities in live performance, including theatre, dance, and performance art She has published numerous articles in journals, such as Theatre Topics, Theatre Journal, Journal of Dramatic Theory and Criticism, Disability Studies Quarterly, Contemporary Theatre Review, Gay and Lesbian Quarterly, Text and Performance Quarterly, and the PMLA An anthology Sandahl coedited with Philip Auslander, entitled Bodies in Commotion: Disability and Performance (U Michigan P, 2005) was the first-ever interdisciplinary, international collection that brought together disability studies and performance studies in sustained conversation She served a six-year term on the board of Ability1st (North Florida’s Center for Independent Living) as well a three-year term as secretary of the board and chair of the disability culture committee of the Society for Disability Studies (SDS) She frequently speaks on issues of art and disability across the United States ii Project Coordinator: Larry A Voss, M.A., Department of Disability and Human Development, University of Illinois at Chicago Research Assistant: Terri Thrower, M.S., Department of Disability and Human Development, University of Illinois at Chicago Project Advisors: Peter Cook Sharon Jensen John Killacky Petra Kuppers Riva Lehrer Victoria Lewis Simi Linton Lynn Manning Tim McCarty Jane Norman Elaine Ostroff Olivia Raynor Betty Siegel Mary Verdi-Fletcher Alana Wallace iii Thank you also to Sarah Rothberger, University of Illinois at Chicago, for many acts of help and insight throughout the project TABLE OF CONTENTS Executive Summary Background and significance Definitions Rationale for a qualitative study design Data collection methods Detailed study results 10 Conclusion 30 References 31 Appendix A 32 Appendix B 39 v EXECUTIVE SUMMARY This report describes the methods and results of a multi-year, qualitative research project supported by a cooperative agreement between the National Endowment for the Arts and the University of Illinois at Chicago, with additional funding from VSA Arts This exploratory study was designed to address two primary research questions: What are the barriers and facilitators mediating access to careers in the arts for Americans with disabilities? What are the social, personal, and economic outcomes of training and work in the arts for Americans with disabilities? The study was designed to systematically explore and identify the critical issues facing Americans with disabilities who are pursuing or engaged in careers in the arts This information was gathered through three distinct research activities:    in-depth, individual, semi-structured interviews with 30 key informants; most were persons with disabilities employed in the arts a working group convening key informants on the topic for a series of focused discussions a two-month, online, virtual focus group of 25 persons with disabilities working in the arts across the U.S The results from the three data collection activities were integrated into a detailed list of major themes and sub-themes to guide future research efforts The results of this qualitative exploration will inform the framework for a quantitative study proposal to assist development of an expanded knowledge base about arts career outcomes for Americans with disabilities Key Themes Key themes emerging from the qualitative data are summarized below (please see page 11 of the report for the full list of major themes and sub-themes) I Developmental issues    The development of a career in the arts is a lifelong path, from acquiring career aspirations, to formal training, to finding and sustaining career opportunities People with disabilities still encounter low expectations, lack of access, and discrimination at each step Professional training is essential, but discriminatory admission practices and lack of accommodation still exclude many people with disabilities Arts educators need to be trained about disability accommodation, the opportunities presented by technology, and the alternative art forms that disabled artists have developed  Mentors are critical to the development of arts careers for people with disabilities II Making a living      Many persons with disabilities who are pursuing arts careers struggle with covering the cost of needed healthcare According to study participants, such individuals often have inadequate health insurance because they lack secondary employment and/or spousal support, and they have pre-existing medical conditions that exclude them from private health plan coverage Many are expected to volunteer their work or to accept low pay Benefit program policies and related paperwork are burdensome but necessary for many to survive financially Fluctuating health and stamina interfere with working and promoting one’s art Although many study participants cited disappointing experiences with organizations that support/promote artists and/or people with disabilities, others were more optimistic about the future development of creative partnerships III Access issues      Access was a central concern in every discussion of barriers and facilitators to careers in the arts Access should be conceived of as multi-faceted, encompassing structural, programmatic, communication, transportation, technological, stamina, and economic issues There is a particular lack of awareness of how to accommodate and integrate d/Deaf1 performers and interpreters Travel opportunities are critical to career development in the arts, yet disability-related travel expenses may keep those opportunities out of reach without additional funding Access should be incorporated into the planning and implementation of all arts events, not only for audiences but for artists as well IV Public Attitudes     Stereotypes about disability pervade expectations about the work of people with disabilities in the arts Conflation of disability with tragedy or medical anomaly keeps employers, agents, and presenters from engaging the work and keeps audiences away from experiencing it Media coverage remains insufficient, inaccurate, and patronizing These difficulties discourage personal disclosure of disability publicly or in media interviews Strategies to deal with the media are needed to counter the damage done to one’s career by media distortion or neglect Refer to the “Definitions” section for an explanation of this term V Defining disability art     People with disabilities are becoming active agents in framing/presenting their own art and the broader concept of disability art They are working out standards for professionalism so their work can be taken seriously A large part of this process is overturning expectations that disability and art will always focus on pain and loss or that art in the context of disability is about therapy and is somehow not “professional” work Art that conveys disability as social/political, complex, or positive provokes confusion and rejection before it gets in front of an audience Programs and organizations that promote the work of other under-represented communities often fail to acknowledge the work of people with disabilities VI Intra-group differences     The experience of people with disabilities working in the arts is not monolithic Differences in art forms, different disability types, d/Deafness versus disability, cultural diversity, class differences, and differences based on geography shape career outcomes Among patterns noted by participants were the following: the greater inclusion of disability in music, and, to some extent, in dance and theatre, in contrast to other art forms; the dominance of physical disability over other disabilities in negotiating access to the arts; an aural bias in the arts that excludes d/Deaf people; and the pressure on people of color and others to categorize their art as either “disabled” OR another facet of their identity Low income further reduced options and accommodations VII Activism      Participants observed that because the disability rights movement has not attained wide recognition, disability arts has not enjoyed the political profile that other minority arts communities have Artists with disabilities may experience tension between their political commitments and their commitment to artistic freedom Some artists with disabilities may feel a heavy responsibility to represent the interests of all people with disabilities in the arts Most participants endorsed concurrent efforts to promote disability rights, disability arts and culture, and education of the public about disability and art Some participants saw a need for stronger advocacy and leadership within the disability arts community to work on advancing the national status of d/Deaf people and people with disabilities in the arts VIII Disability Identity as Individuals and as a Group     Participants debated the value of identifying with disabled people as a group or even as a culture Concerns were expressed about internal conflicts regarding race, disability types, age of acquisition, and issues with apparent v non-apparent disabilities, and Deaf v disabled Participants wondered about the relative value and risk of identifying as a community artist versus a mainstream artist Participants agreed that working concurrently on both community-based and mainstream fronts would be the optimal approach There was strong consensus that a formal disability history literature would be helpful in promoting funders’ and the public’s recognition of disabled people in the arts IX Recommendations Recommendations were made in several key areas, including:  Funding – Recommendations for grants, scholarships, information on reconciling government benefits (e.g., Social Security, vocational rehabilitation, Medicare/Medicaid) with work in the arts, and organizational support  Professional Development – Recommendations for networking and collaboration between d/Deaf and disabled people working in the arts, for internships, and for assistance with grant writing, marketing, and use of the Internet for promotion, distribution, and networking  Arts Administration, Agents, Presenters - Recommendations for educational materials for presenters, incentives for people with disabilities to train in arts administration, presenting, casting, and other roles in the arts  Media, Publicists – Recommendation to educate critics, publicists, and reviewers about disability and Deaf arts  Education - Recommendations for disability and d/Deaf inclusion in arts curriculum, and for including art classes on Individualized Education Programs (IEPs)  Accessibility - Recommendations for grants for adaptations, incentives for accessible venues, and policies to welcome and accommodate people with disabilities in announcements of arts opportunities  Disability Art and Culture – Recommendations for nurturing disability art and culture, creating an academy for integrated dance, and for educating audiences and decision-makers in the arts about disabled people’s range of involvement in the arts  Advice to Artists – Recommendations for serving on grants panels, and for networking, and creative marketing, and for creating and maintaining good relationships with arts councils disability On the group level, participants debated the value of identifying with disabled people as a group or even as a culture Concerns were expressed about internal conflicts within the group based on race, disability types and age of acquisition, apparent v non-apparent disabilities, and Deaf v disabled Another issue involved the relative value and risk of identifying as a community artist versus a mainstream artist Some participants felt that in times of better community-arts funding, community-based work was productive and could be a stepping stone toward mainstream recognition Most participants agreed that working concurrently on both community-based projects and on mainstream uptake would be most beneficial There was strong consensus that recent efforts to develop a formal disability history literature should be supported and would be helpful in promoting funders’ and the public’s recognition of disabled people in the arts Issues of Voice and Identity  How does identification as a person with a disability negatively impact a career in the arts? What are the hazards of identifying self as d/Deaf or disabled?  Should we downplay the focus on identity politics? We are rarely represented in social justice events  Questions for respondents: Do you identify as disabled? What other identities you have?  Do you see disability as a civil rights issue? Do you see yourself as singular or as part of a group?  Do we have mentorship or continuum between generations?  If we conform to prevailing art conventions, what is the impact on our identity? Do we feel entitled to express ourselves?  Does acquiring a disability destroy our art?  Some artists identified as a disabled person, but did not identify with disability culture or even know what it was  Some disability culture artists discriminate against those with non-apparent disabilities  Deaf culture and disability culture often grouped together, and this is an uneasy pairing  Sometimes disability arts community can become insular and are the main audience at each other’s events Can be difficult to move the work into the mainstream  Lack of racial diversity in the segment of disability culture that gains recognition (gets published, reviewed, gallery showings, performances, etc.) Disability community versus mainstream  Community artists may be considered “not good” artists “Professional artists” don’t always embrace all the different types of art: community, therapeutic, recreational, etc This can be a problem (depending on your perspective) in the creation of disability art events, festivals, etc What counts as disability art and culture?  Community work can become mainstream If art cannot be local because there is little community funding now, then we create a disability art history to create a national See P Longmore & L Umansky (Eds.) (2001) The new disability history: American perspectives New York: New York University Press 28       presence, so we can go to funders and show them what we can (or have done) when funding is there We have to put ourselves out there to the sources of money Just recognize that a lot IS being done at community level, and we need to push it both to community and mainstream Use resources here to bring community artists to the next level “I’m wondering if we consider both how to recognize mainstream AND community artists I’m worried that we are focusing on mainstream, and how to shake up the mainstream.” “All of our work was funded by the local Arts council Now funding is gone It was ALL community based work.” How we identify and support what’s going on in the community to move forward? Needs to be development of an audience within disability community (not just artists with disabilities working for mainstream movement) that can challenge disabled artists to sophisticated work Sometimes if an artist is associated with a disability-specific theatre, dance company, or other disability-specific organization (like VSA) they’re taken less seriously by decisionmakers Disability history and disability culture  Knowing our history and getting the word out to others The keepers of history are not usually aware of the history of d/Deaf and disabled people  What artists with disabilities really feel about their own lives? What they know about their history and future?  Formal documentation is needed to educate people about d/Deaf and disabled artists  Finding place for disability and d/Deaf art and the teaching of history  “We’ll never get the funding we want unless somehow we can create and promote our own history that WE document, that represents what WE know about disability.”  Disability and Deaf studies academics support their artists by teaching about disability arts in their classes, showing films, bringing artists to campus, selling books etc  Disability Student Services often brings in d/Deaf and disabled artist for disability awareness trainings or cultural celebrations on campus IX Recommendations “Tell them that it’s so important to fund this group So many of us have untapped stories that I really feel the world needs to hear.” “I think that it’s necessary to focus on artists with disabilities, to differentiate the group or the culture, the collective, but ultimately it’s important for that definition to disappear somewhere, and that perhaps greater support for the collective can ultimately be steered to greater inclusion in the mainstream.” Although we encouraged participants to provide recommendations, little prompting was needed Some of the most eloquent and energetic comments we received were in response to questions 29 about suggestions for funders, instructors, program directors, and employers The recommendations fell naturally into clusters that recapitulate many of the themes presented above Funding  Strategic grant support to help people with disabilities get the accommodations they need o Grants to pay for disability-related expenses companies or individuals incur to travel Examples:  Travel expenses for Personal Assistants (airfare, hotel, additional hours)  Interpreter and CART expenses  Wheelchair repair and upkeep o Grants to pay for accommodations and technology needed for artists to their work o Grant to assist individuals who have become deaf or disabled to resume their artmaking throughout the rehab process  Funding to help people adapt their art making practices once they become disabled Funds for injured artists Rehab money  Health insurance for disabled artists that is not linked to eligibility for social security  Find a creative way to grant resources without jeopardizing benefits  Provide individual artist grants to generate new work  Provide scholarships to individual students who are competitive at top-notch training programs  Provide a clearinghouse for information on government benefits and income earning as an artist This information should be very specifically geared toward artists It is sometimes difficult to translate the general information on SSI and SSDI for the specifics of arts careers  Create a different wing to VSA with a new name and that only works with professional, adult artists It should be run by arts administrators like any other arts organization The way in which it presents these artists should be of the highest professional quality; they should not emphasize the “disability story” of the artists Professional Development  Opportunities for d/Deaf and disabled artists to network, share their work with one another, form mentoring relationships, and collaborate on projects o d/Deaf and disability art festivals o Workshops with other d/Deaf and disabled artists o Conferences on d/Deaf and disability art o Artist retreats and colonies  Opportunities for bridge building and collaboration between Deaf artists and disability artists These different communities need to learn more about one another  Paid internships  Assistance with grant writing, publicity, marketing, and fundraising, perhaps paid arts administration interns (especially those with disabilities) who could assist companies and individuals with grant writing 30  Help people take advantage of new opportunities because of technology: blogs, vlogs Arts Administration, Agents, Presenters  Develop an educational handbook for presenters on hosting d/Deaf and disabled artists  Provide incentives and funding for disabled and deaf students to go into the fields of arts administration, presenting, casting, artist representation, art dealing, etc Media, Publicists  Educate critics, publicists, and reviewers about disability and Deaf arts Education  Include deaf and disabled artists as well as deaf and disability studies research in all arts curriculum at all educational levels o Art history, criticism, theory, biography o Examples of deaf and disabled artists and content about disability in curriculum  Include arts classes on Individualized Education Programs (IEP)s Accessibility  Provide grants and incentives to arts organizations to make physical adaptations and purchase access technology and equipment  Provide incentives for accessible venues (studios, rehearsal spaces, etc.) to share their spaces with disabled individuals or companies  Audition notices and announcements for other opportunities should specifically welcome the participation by disabled artists and a notice of whom to contact for accommodations Disability Art and Culture  Support and nurture the development of disability art and culture  Centers for Independent Living and Disabled Student Services may be organizations that support disability art and culture as well as provide service (this is being done in many places)  Develop international academy for training integrated dance forms  Need to educate audiences and decision makers about the different arts arenas in which disabled people participate: professional, therapeutic, community, recreational Audiences need to know what they are experiencing Advice to Artists  Serve on grants panels, learn what funders want  Network within the disability community and the arts community, get your name out and be known  Be creative how you market yourself so can move to many different audiences: example: performance artist, inspirational speaker, keynote speaker, comedian Some of these gigs pay a lot more than others (for almost same show one can get paid big dollars to be an inspirational speaker but not as a performance artist or stand-up comedian) 31  d/Deaf and disabled artists should visit their local arts councils Apply for Artist-inResidency programs Do a career interview with arts councils and other artists Conclusion This research project used systematically selected information-rich sources and three types of qualitative data collection to explore and identify key themes characterizing the experiences of Americans with disabilities pursuing careers in the arts Some of the stories that our participants shared were disturbing, some were hopeful, and many were moving and inspirational—not in the maudlin way those words are often used to describe the work of d/Deaf and disabled people— but in the way people always stir us when they demonstrate so intensely their creativity, generosity, dedication, and humanity We are fortunate researchers; one of our participants gave us the ideal concluding comment: “Artists with disabilities have messages that can help the whole world Can help people become more comfortable with a changing world, a world that’s evolving very fast, with a world where people have to constantly adapt One where people are living long enough to face physical and health barriers And a world where different is no longer a dirty word, but we’re not really sure what it is All these kinds of things are topics that people with disabilities have wrestled with in their lives and the artists have expressed them in incredible ways that if people will get past their fears and recognize that there might be something juicy there for them to get from observing the art of people with disabilities, then their lives would be enriched.” 32 REFERENCES Barnes, C & Mercer, G (1997) Doing Disability Research Leeds, England: The Disability Press Gill, C.J (1998) Developmental obstacles to careers in the arts for young persons with disabilities White paper commissioned for the conference "National Forum on Careers in the Arts for People with Disabilities" convened by the John F Kennedy Center For the Performing Arts Patton, M Q (2001) Qualitative Research and Evaluation Methods (3rd edition) Thousand Oaks, CA: Sage Publications 33 Appendix A Guide for Individual Interviews Key Informant Interview Questions   CAREERISTS = Disabled Arts Professionals only (disabled artists, teachers, curators, program coordinators, behind-the-scenes technicians) SHEPHERDS = Those who work with disabled people pursuing careers in the arts; shepherd may be either disabled or non-disabled Note: KI will often cross categories Interviewers will adjust questions according to the experience and areas of expertise of the KI I Current Work in the Arts “The first part of our interview will focus on your career in the arts currently.” CAREERISTS Tell me about your current work in the arts and how it relates to disability SHEPHERDS Tell me about your current work in the arts and how it relates to disability II Background, Education, and Training “I’d now like to move on to a discussion of your background, education, and training in the arts.” A Impetus CAREERISTS What attracted you to a career in the arts? SHEPHERDS How did you become involved in work with disabled people in the arts? PROBE: Was there any particular experience, event, or opportunity that sparked your interest in the arts? PROBE: Was there any particular experience, event, or opportunity that sparked your interest in arts and disability? B Formative years CAREERISTS Think about your formative years; describe any particular people who were an example to you or encouraged you SHEPHERDS Discuss the role of mentors in the career development of disabled people pursuing careers in the arts Has your work involved facilitating mentoring relationships for disabled people pursuing careers in the arts? PROBE: Describe any mentors you might have had Were any of these mentors disabled? What factors you consider when matching mentors and mentees? 34 C Arts Training CAREERISTS Tell me about your arts education and training SHEPHERDS Tell me about your observations concerning the availability of formal education and training for disabled people pursuing careers in the arts PROBE:  formal/informal  how was it funded? (Voc Rehab?, if so, what was your experience with them?)  how long did it take?  has this training served you well in your career?  were accommodations needed and provided in your training? how?  What barriers, if any, did you encounter in pursuing your arts education? How did you address them? What supported/facilitated your education in the arts?  How did teachers react to your talent?  If you were mainstreamed, what kind of support for your talent did you receive?  How did you perceive this support in relation to your non-disabled peers? Are formal training credentials important to career prospects? What have you observed about informal training opportunities for disabled people pursuing careers in the arts? D Obstacles and Barriers to Pursuing Career CAREERISTS Tell me something about the obstacles and barriers you might have encountered while pursuing your career in the arts SHEPHERDS In your experience, what have you learned of obstacles and barriers for disabled people pursuing careers in the arts PROBES:  physical  programmatic  economic  attitudes, prejudice, devaluation, dismissal  medicalization [your work being seen in terms of therapy]  special programs PROBES:  physical  programmatic  economic  attitudes, prejudice, devaluation, dismissal  medicalization [your work being seen in terms of therapy]  special programs CAREERISTS What approaches or strategies have you used to address these obstacles and barriers? SHEPHERDS What approaches or strategies have you observed disabled people pursuing careers in the arts using to address these obstacles and barriers? PROBES:  in terms of bookings  in terms of audiences  in terms of getting curators or agents to take disabled artists seriously  getting jobs What role you play as an administrator in dealing with these obstacles and barriers? What barriers have you faced as an administrator in advancing the careers of disabled people? 35 E Media/Genre Choice CAREERISTS How did you choose the artist media/genre that you use? SHEPHERDS Have you noticed differences in the ability for disabled people pursuing careers in the arts to attract support based on artistic media or genre? If yes, how would you account for these differences? What sorts of artistic genres has your organization supported? III Employment Outcomes/Income: “As you know, a component of our research project is concerned with identifying employment outcomes for people with disabilities in arts careers To that end, I’d like to ask you some questions about your income and other means of support Your experience may be able to help other people with disabilities pursuing similar career paths, so any information you wish to share with us would be extremely beneficial Please feel free, however, to decline responding to any questions that you would prefer not to answer Also, please be assured that in the final report, your answers will be kept anonymous.” A Income from Arts CAREERISTS What percentage of your income comes from your work in the arts? What is your annual income from your work in the arts? SHEPHERDS Are there differences in the ways in which disabled people pursuing careers in the arts subsidize their art making careers? How is your work in the arts funded? How have you become aware of these differences? PROBES:  grants  family support  patrons  corporations  employer  selling artwork, commissions, royalties What funding sources you tap to support the work of disabled people pursuing careers in the arts? B Government Benefits and Health Insurance CAREERISTS Do you receive or have you received any government, disability-related benefits? Which ones? SHEPHERDS PROBES:  Voc Rehab  SSI  SSDI  Medicare, Medicaid  Other 36 CAREERISTS Do you have health insurance? SHEPHERDS Have disabled people pursuing careers in the arts expressed concerns about health insurance to you? What kind and how much does it cost? What are these concerns and, in your role as an administrator, have you been able to help address some of them? Have your career choices been affected by access to health insurance? C Barriers to Income CAREERISTS Has your access to government benefits been affected by your earnings as an artist? SHEPHERDS Have you encountered disabled people pursuing careers in the arts who are concerned that their arts’ earnings may jeopardize their eligibility for government disability-related entitlement programs or benefits? If so, how? What concerns, if any, you have about future effects on your benefits? How did you address these concerns? IV Disability Identity and the Arts “I’d like to spend some time discussing the relationship between disability and your work in the arts itself.” A Relationship to Disability Culture CAREERISTS Do you consider yourself a part of “disability culture” and/or Deaf culture? SHEPHERDS How you see yourself and/or your organization contributing, if at all, to the development of disability culture and/or Deaf culture? If so, what does this mean to you? If so, what does this mean to you? PROBE: How you consider the advancement of disability culture and/or Deaf culture to be related, if at all, to your professional success as an artist? Do you consider the advancement of disability and/or Deaf culture related to the professional success of disabled people pursuing careers in the arts? B Audience and Marketing CAREERISTS In your work, you address a primarily disabled audience, non-disabled audience, or both? How you reach those various audiences? SHEPHERDS How you market the work of disabled people pursuing careers in the arts? (If not, why not) Do you promote the work as “disability art.” PROBE:  marketing  art content  art form  audience accessibility In your experience, has marketing work as disability art been a successful approach? In your opinion why was this approach successful (or not)? Is making audience spaces accessible related to the 37 success of disabled people pursuing careers in the arts’ work? For teachers: Do you address disability art in your work with students? What are your reasons for this choice? C Relationship between Disability Identity/Impairment and Aesthetics CAREERISTS When did you acquire your impairment? Did the onset of impairment affect your choice of media or genre? SHEPHERDS Do you consider yourself a disabled person or an ally to the disability community? How does your personal identification relate to your work with disabled people pursuing careers in the arts? D Accommodations and Access to Profession CAREERISTS Do you require disability accommodations in your arts career? SHEPHERDS If you have an impairment, you require disability accommodations in your arts career? What are they? What are they? Who funds them? Who funds them? What you to provide access to your organization for disabled people pursuing careers in the arts and/or audiences? CAREERISTS Are there aspects of your profession that are difficult for you to access? [Determine whether the difficulty is impairment-related or socially mediated] SHEPHERDS If you have an impairment, are there aspects of your profession that are difficult for you to access? Has your career trajectory been affected by impairment or disability? Has your career trajectory been affected by impairment or disability? In your work with disabled people pursuing careers in the arts, have you noted areas of the profession difficult for disabled people to access? Have you noticed career trajectories of the artists you’ve worked with affected by impairment or disability? E Discrimination CAREERISTS Do you feel you have ever experienced discrimination (blatant or covert) in your arts career based on your impairment? SHEPHERDS Have you or the artists you’ve worked with encountered discrimination (blatant or covert) in their arts careers based on impairment that you know of? What about discrimination based on another aspect of your identity? What about discrimination based on another aspect of identity? 38 F Intersections of Identity CAREERISTS In your arts career, how does your disability identity relate to other aspects of your identity (such as your race, gender, or sexuality)? SHEPHERDS In the arts careers you have observed, how does disability identity relate to other aspects of these artists’ identity (such as your race, gender, or sexuality)? V Social Networks “So far, we’ve discussed your arts career in addition to employment barriers, facilitators, and outcomes But we’re also interested in how other aspects of your life relate to your arts career, such as family and social networks.” A Family CAREERISTS Describe your family SHEPHERDS What you know about social support networks for artists with disabilities (family, friends, colleagues, etc.)? PROBES:  Immediate and extended?  “Chosen” family vs biological or adoptive family?  Do you have a significant other and/or children?  Has your family situation affected your arts career choices? How? What role did your family play in your career decisionmaking process? How did your family encourage you? For example, did they encourage you to pursue arts as a real career or did they treat your interest in art as “good therapy”? B Friends and Colleagues CAREERISTS Describe your social circle SHEPHERDS How have your friends and colleagues affected your arts career choices? C Living Situation CAREERISTS Has your choice of place to live been affected by your impairment or disability status? SHEPHERDS Have you encountered artists making choices about where to live based on impairment or disability status Has this choice affected your arts career? Have these choices affected their arts careers? 39 VI Wrap-Up Issues “We’re now moving in the final phase of the interview in which I’d like to ask you a few more questions about your career in the arts.” A Satisfactions and Challenges CAREERISTS What you find most satisfying about your work as an artist? The most challenging? SHEPHERDS What you find most satisfying about your work with disabled people pursuing careers in the arts? The most challenging? B Recommendations to Funders CAREERISTS If you could speak right now to a room of arts funders, what would you say to them about supporting careers in the arts for people with disabilities? SHEPHERDS If you could speak right now to a room of arts funders, what would you say to them about supporting careers in the arts for people with disabilities? C Advice to Others CAREERISTS What advice would you give to an individual with a disability who wants to pursue a career in your arts career? SHEPHERDS What advice would you give to an individual with a disability who wants to pursue a career in your arts career? What advice would you give to teachers, family members, and others who can support arts careers for disabled people What advice would you give to teachers, family members, and others who can support arts careers for disabled people D Envisioning the Future CAREERISTS Looking ahead five years from now, how you envision your career in the arts? SHEPHERDS Looking ahead five years from now, how you careers in the arts for disabled people? E Anything Else? CAREERISTS Looking back over everything we talked about, what stands out to you as the most significant source of support as you have pursued your career in the arts? Are there other sources of support that we haven’t covered? SHEPHERDS Looking back over everything we talked about, what stands out to you as the most significant source of support as you have pursued your career in the arts? Are there other sources of support that we haven’t covered? CAREERISTS Is there anything else you’d like to tell us about barriers and facilitators to careers in the arts for people with disabilities that we haven’t covered? SHEPHERDS Is there anything else you’d like to tell us about barriers and facilitators to careers in the arts for people with disabilities that we haven’t covered? 40 “Thank you for your time and invaluable feedback I’ve enjoyed talking with you.” Appendix B Virtual Focus Group Questions QUESTIONS: We want to know more about barriers and facilitators to careers in the arts for Americans with disabilities Let's start by looking at developmental issues early in life What are the main barriers preventing youth with disabilities from starting on pathways to careers in the arts? What are the potential supports or facilitators for youth with disabilities to pursue arts careers? If we wish to promote careers in the arts for Americans with disabilities, what are the access issues that must be considered and how should they be addressed? What kinds of barriers—including attitudes, stereotypes, and/or discrimination Americans with disabilities encounter in their pursuit of careers in the arts? How can these be dealt with? Sometimes people with disabilities are considered an identity group or a cultural community, defined socially and politically in the way other under-represented groups have been defined in society What impact these issues of identity have on people with disabilities pursuing careers in the arts? FOLLOW-UP QUESTION: In talking with Americans with disabilities pursuing careers in the arts, some individuals identify with the "disability community" as a sociopolitical identity and others not Some may also identify with other socially oppressed or marginalized groups, such as people of color, gay people, women, etc We are interested in how members of the virtual focus group experience such identity issues as they pursue careers in the arts, either through your own framing of your identity or through the identities assigned to you by others How are such identities important or not important in your work in the arts or in the work of persons with disabilities you know? FOLLOW-UP QUESTION: In addition to discussing your connection to others with disabilities in general, some of you mentioned identifying with other under-represented groups, such as African Americans, gay people, and persons with "invisible" or less understood disabilities Disabled Americans are indeed a diverse group What issues related to race, gender, sexuality, disability type, artistic medium, etc come up as Americans with disabilities pursue careers in the arts? FOLLOW-UP QUESTION: Over the past years, there has been a growing visibility of people with disabilities in the arts as well as a growing interest in how disability and art intersect Some people refer to this development as a disability arts movement or disability culture movement As you pursue a career in the arts (or assist others in pursuing such careers), what you think has 41 been the impact of this disability arts movement? Let's talk about the "business" side of arts careers for Americans with disabilities What barriers Americans with disabilities confront in making a living and economically supporting themselves in the arts? What can be done to make this easier and more successful? FOLLOW-UP QUESTION: How does a person with a disability who is pursuing a career in the arts negotiate needed benefits, insurance, Social Security, Vocational Rehab, etc.? What have been your experiences in this vein? FOLLOW-UP QUESTION: Sometimes artists with disabilities make a distinction between professional artists and others (non-professional) who are involved in producing art What does "professional" mean in the context of art and disability, and why is it important? We are interested in any trends you see regarding careers in arts for people with disabilities Regarding such career opportunities or patterns, where have we been, where are we going, and what could the future be ideally? 42 ... efforts – particularly state fora and conferences on Careers in the Arts for People with Disabilities cosponsored by the National Endowment for the Arts, Kennedy Center for the Performing Arts, ... advancement of careers in the arts for people with disabilities Most were persons with disabilities working in the arts, some were individuals whose work promoted the arts careers of people with disabilities, ... Arts Career Outcomes and Opportunities for Americans with Disabilities: A Qualitative Study Background and significance of the research topic Before 1990, the public profile of people with disabilities