Arts Career Outcomes and Opportunities for Americans with Disabilities

This information was gathered through three distinct research activities:  in-depth, individual, semi-structured interviews with 30 key informants; most were persons with disabilities e

Arts Career Outcomes and Opportunities for

Americans with Disabilities

Carol J Gill Carrie Sandahl

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 co-

edited 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

Thank you also to Sarah Rothberger, University of Illinois at Chicago, for many acts of help and insight throughout the project.

TABLE OF CONTENTS

Appendix A 32

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:

1 What are the barriers and facilitators mediating access to careers in the arts for Americans

with disabilities?

2 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

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 withdisabilities 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 thatsupport/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

1 Refer to the “Definitions” section for an explanation of this term.

2

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 tothe 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 hasnot 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) withwork 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 withgrant writing, marketing, and use of the Internetfor 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 andmaintaining good relationships with arts councils

4

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 employed in the arts was obscure andfragmented Occasionally, a particular community exhibit showcased art created by a group ofpeople with disabilities, or a particular individual with a disability would be spotlighted in the

media for producing art despite his or her condition There was, however, little awareness of

people with disabilities as vital contributors to the arts

In contrast, a disability culture movement has emerged in the last two decades in the momentumgenerated by the disability rights movement Artists with disabilities have started to draw public

attention, reflected in the following: mainstream newspaper articles (New York Times, Chicago

Tribune) and disability press coverage (Disability Rag, New Mobility); special issues of scholarly

journals (Public Culture, Disability Studies Quarterly, Text and Performance Quarterly); and university courses, conferences, exhibits, festivals, and documentaries (Vital Signs, King Gimp,

Crip Shots) dedicated to disability art and culture The portrait of artists with disabilities that

emerges from this coverage attests not only to the value of their work but also to the complicatedimpact of disability on their creativity Rather than being lauded simply for producing art despitetheir disabilities, artists with disabilities are beginning to gain recognition for bringing freshperspectives to the world of art and arts training In the arts, as in the larger world, individualswith disabilities are more visible than ever before Laws and policies prohibiting discrimination

in education, employment, and community programs offer the promise of expandingopportunities for Americans with disabilities to pursue inclusion in arts employment

These possibilities prompt questions about the real-life outcomes of Americans with disabilitieswho seek careers in the arts With scant information about persons with disabilities involved inproducing, promoting, and teaching art, we have been poorly equipped to bolster the pursuit ofsuch careers For example, an actor with a disability who is fighting job discrimination may wish

to be armed with facts about the under-representation of disabled actors in film or television Ahigh school student with a disability who wants to be a professional writer—but whose careerchoice has been challenged as unrealistic— may want to know how other writers with disabilitieshave fared A community arts program director developing an outreach effort may benefit fromknowing how gender, race, and class intersect with disability, in affecting access to the arts Whathas been missing is a systematic examination of the personal, social and economic outcomesexperienced by people with disabilities who choose the arts as their primary vocation

This report describes the methods and findings of a multi-year research project on the careerexperiences of Americans with disabilities who are pursuing or engaged in primary employment

in the arts In 2004, the National Endowment for the Arts (NEA) issued a request for proposals toaddress the fact that “little data has been systematically gathered about Americans withdisabilities that pursue or have arts careers.” This resulting research project was supported by a

6

cooperative agreement between the NEA and the University of Illinois at Chicago (UIC).Additional funding for the first phase of the project was provided by VSA Arts

The project team was a group of researchers with disabilities with backgrounds spanning thesocial sciences, humanities, and education Three members of the research team identifythemselves as artists and/or arts instructors

The project’s planning and implementation was guided by a panel of 15 Project Advisors, alldistinguished by a substantive record of public visibility, hard work, and commitment regardingthe advancement of careers in the arts for people with disabilities Most were persons withdisabilities working in the arts, some were individuals whose work promoted the arts careers ofpeople with disabilities, and some were both From conceptualization, through participantrecruitment, to feedback on our research activities, this extraordinarily knowledgeable anddiverse group of experts proved invaluable

Definitions

The population was defined, for the purposes of this research, as individuals who self-identify asUnited States residents with disabilities or who are d/Deaf and have committed themselves to thepursuit of a primary career in the arts, and who, therefore, meet the following screening criteria:

1 Training They have received, are receiving, or have persistently pursued substantiveformal training toward a career in the arts “Formal training” usually involves but is notrestricted to institution-based training programs; however, the formal transmission ofskills in family, cultural, and community arts networks (e.g., folk art traditions) also meetthis criterion

2 Accomplishment They can report evidence of major accomplishment in the arts, such

as a record of public performances or exhibitions, awards, commendation from mentors,

or other refereed acknowledgment

3 Career They have engaged in arts training and activities for the central purpose ofestablishing a primary career, not merely in the pursuit of a secondary career oravocational involvement

Arts occupations included those directly involved with the production of art work (includingvisual arts, theatre performance, writing, dancing, singing, working as a musician, comedy,video/film-making, design/architect, etc.) We also included individuals who did not identify as

“artists” but who worked in other roles in the arts, such as teaching, marketing, consulting,producing, funding, and administration

Persons with disabilities included individuals who self-identified as persons with sensorydisabilities (e.g., blindness), physical/mobility disabilities, learning disabilities, mental illness,intellectual/developmental disabilities, and environmental illness or other chronic conditionsaffecting stamina or daily function We also included persons who identified as deaf or “hard-of-hearing” (including persons who were hearing until adulthood) and Deaf (persons who identified

as belonging to Deaf culture)

It should be noted that the terms “disabled people” and “people with disabilities” are used

interchangeably in this report In doing so, we acknowledge that there is still no terminology that

is universally accepted within the large and heterogeneous disability community of the U.S By using both forms, we wish to convey respect for those who feel strongly about placing the

“person first” as well as those who view the term “disabled” as a sociopolitical descriptor or an identity that can be the foundation of pride We also use the term “d/Deaf” to be inclusive of individuals who identify with Deaf culture as well as individuals who view deafness in more physiological terms

Rationale for a qualitative study design

Consistent with contemporary theory and practice in disability rights and disability studies(Barnes & Mercer, 1997), we designed our study to recognize and centralize the authority ofpersons with disabilities to provide missing details about their own experience – in this case,their career paths in the arts We also strove to be wide-ranging and rigorous in finding,collecting, and analyzing key information from individual with disabilities working in the artsand their supporters across the U.S Guided by those ideals, we undertook qualitative datacollection as a first step toward what eventually may become a national quantitative study Westarted with a qualitative research approach because it is historically well-suited to explore topicsabout which few data have been systematically gathered, and because qualitative researchmethods commonly support information-gathering from under-represented voices (Barnes &Mercer, 1997; Patton, 2001) Our investigation used focus groups and individual interviews toidentify the major domains and sub-themes of interest contained in this report Together, thefocus groups and interviews addressed two primary research questions:

1 What are the barriers and facilitators mediating access to careers in the arts for Americans

with disabilities?

2 What are the social, personal, and economic outcomes of training and work in the arts for

Americans with disabilities?

Data collection methods

Our research benefited from information gleaned throughout years of earlier pioneering efforts –particularly state fora and conferences on Careers in the Arts for People with Disabilities co-sponsored by the National Endowment for the Arts, Kennedy Center for the Performing Arts,U.S Department of Education, U.S Department of Health and Human Services, Social Security,VSA Arts, the National Arts and Disability Center, and other sponsoring partners The researchwas also facilitated by the principal investigator’s pilot research on this topic (Gill, 1998).Although those sources do not provide a systematic or representative pool of data, they dosuggest that factors such as gender, race, class, type of disability, and type of arts medium canmake a difference in arts careers outcomes for people with disabilities Accordingly, we selected

a heterogeneous sample to capture such differences – a strategy known as maximum variation

sampling (Patton, 2001) Three data collection methods were employed to understand better the

8

critical issues affecting persons with disabilities pursuing arts careers, to identify the majorthemes and sub-themes of that experience from the perspective of key informants, and to explorethose themes in depth by using a sample of persons with disabilities from various backgroundsworking in the arts across the country.

Key Informant interviews

The qualitative research phase began by developing a list of key informants, including: artists

with disabilities; art educators; administrators; consultants; and other advocates and supporterswho had demonstrated through writing, presentations, or service a high level of knowledge andexperience regarding the research topic Simply stated, we sought a group of experienced people

“in the trenches” who had a lot to tell us about their experience We developed this list by usingavailable resources (such as the participant lists of the previously mentioned conferences ondisability and careers in the arts as well as other conferences), by asking our Project Advisors togenerate names, by soliciting recommendations from disability and arts organizations, byreviewing the backgrounds of artists and advocates mentioned in articles on disability and art,and through “snowball” or “word-of-mouth” referrals from known artists and advocates Arigorous sampling strategy required the use of multiple sources to identify prospectiveparticipants Because people with disabilities are often divided from each other by accessbarriers, lack of self-identification as “disabled,” and lack of knowledge about other people withdisabilities working in the arts, there are no well-established networks or concentrations ofpeople with disabilities pursuing careers in the arts from which to sample The list generated byour sources was ultimately pared down to 31 key informants by attending to the followingselection criteria:

 Prominence - examining who had done the most highly acknowledged work in the area

 Frequency - checking who had been recommended most frequently by our ProjectAdvisors and other referral sources

 Availability - ensuring ability to be interviewed

 Diversity - promoting diverse representation within the sample with respect todemographics, disability type, and art medium

The demographic distribution of the key informants was:

 20 women, 11 men

 25 White, 5 African American, 1 Asian

 25 identified as disabled, 3 as d/Deaf, and 3 as nondisabled

 Disability types (in addition to identification as d/Deaf): physical disability, blind/lowvision, mental illness, environmental sensitivity

 Type of arts involvement: dance, poetry, performance, playwriting, other writing (fiction,essays, memoir), video, design, directing, administration, educator, casting, consulting,funding, visual art, photography, singing, and playing music

In-depth interviews with key informants were conducted in person or by telephone, depending on

feasibility and accessibility in each case, and were audio-recorded for later analysis The structured interview question guide (Appendix A) was developed through review of the literatureand advisor input Thirty interviews were completed; one informant’s interview was notconducted because of scheduling problems These interviews, with some of the most prominentfigures in the world of the arts and disability, were impressive in depth, detail, and coherence.Many were fascinating case studies of individual careers in the arts for Americans withdisabilities Others provided a broader overview of forces affecting many people with disabilities

semi-as they pursue arts careers

Working group meeting

Near the end of the interview study, we convened a one-and-a-half-day, in-person workingmeeting of key informants to:

 talk with each other about their work and share insights into issues facing people withdisabilities who pursue careers in the arts;

 discuss the issues emerging from our data; and,

 help us brainstorm topics for inclusion in our next research activities

The working meeting was held at the University of Illinois at Chicago (UIC) The activitieswere:

First half-day – The investigators facilitated an in-depth focus group to brainstorm issues The

group discussion was focused on this main question:

“When you think about Americans with disabilities pursuing careers in the arts, what are thecritical issues we need to be addressing or asking about?”

We went around the room several times in round-robin fashion as each participant contributed anissue or topic for inclusion This discussion was extremely full and lasted the whole afternoon.Participants focused on barriers and facilitators to arts careers with no additional prompting andalso discussed social, personal, cultural, and economic outcomes of arts careers The lively paceand richness of this discussion, and the degree of interaction and synergy among participants,confirmed the value of bringing together a broad cross-section of experienced andknowledgeable informants.Many spontaneously commented that this was the first time that theyhad been in the same room with so many leaders in the arts and disability community—anexperience they found exhilarating

Second half-day – Participants were assigned to small groups with the task of selecting topics

and sub-topics for inclusion in the planned research questionnaire All groups were given asection of the list of themes generated in the first half-day session to use as a starting point forcreating questions that they felt would yield critical information about the status of Americanswith disabilities who pursue careers in the arts

Third half-day Participants re-convened in a large group session to report the highlights of

their small-group discussions All participants responded to these reports with questions and

10

comments The “culmination” objectives of the third half-day were to:

 refine question topics through review of the small-group work;

 have follow-up discussion for additions, clarification, or more in-depth exploration ofcritical topics; and,

 exchange concluding ideas to guide our work for the remainder of the research project

Virtual focus group

To supplement our “key informant” data collection, we wanted to give others with disabilitiesworking in the arts and disability an opportunity to “talk to each other” and provide input to ourproject in their own words To optimize access for participants living throughout the U.S., onelarge “virtual” focus group discussion was held via e-mail Participants were defined as:

 career artists with disabilities;

 individuals with disabilities working in or pursuing other careers involving the arts (e.g.,arts training, administration, program development, etc.); or,

 disabled or nondisabled individuals with intensive involvement or experience in disabilityand arts careers

We recruited participants through announcements posted on both disability-related and related listservs and websites, encouraging wide circulation “to get the word out.” From almost

arts-100 volunteers, 25 participants were selected based on diversity of demographics, disability type,and type of arts medium The distribution of characteristics was:

 17 women (age 22-68) and 8 men (age 26-68)

 18 White, 5 African American, 2 Latino individuals

 12 individuals identifying as having a physical disability, 5 d/Deaf, 2 “hard of hearing,” 4with mental illness, 4 blind, 1 with a learning disability, 1 reporting a “brain disorder,” 1with “multiple disabilities.” (Some participants listed more than one type.)

 Types of involvement in the arts included: painting, drawing, sculpting, print-making,photography, graphic design; dance, theater performance and/or directing; poetry,playwriting; video/film-making; teaching; marketing; and administration

Based on data from the preceding project activities, six focus questions were developed andemailed one at a time to the group over a two-month period of moderated discussion (seeAppendix B for the focus group questions)

Detailed Study Results

In the course of the study, participants described many real-life scenarios involving Americans

with disabilities who pursue careers in the arts Here are examples (with changes in minor details

to protect confidentiality):

 An artist with a disability travels with his personal assistant to another state to show hiswork at a professional arts event After paying his assistant for his additional hours andtravel expenses, the artist has spent more to pay for accommodations than he has earned

as his honorarium

 A young woman with a visual impairment has spent many years teaching herself to paint

As a college student, she becomes interested in formal training The professor teachingintroductory painting expresses skepticism in her ability to participate in the class or to be

an artist at all The student must convince him by showing him her work Her disabled classmates are not held to this test Now a professional artist, she expressesconcern that artists with disabilities have to teach themselves to reach a certain skill levelthrough informal means before they are taken seriously and “allowed” to participate intraining programs

non-Such stories exemplify the barriers confronting people with disabilities who choose the arts astheir life’s work However, some stories had different endings:

 A performing arts company of artists with and without disabilities tours its show acrossthe U.S Presenters become so enthusiastic about bringing their work that they makepermanent upgrades to their facilities both onstage and off, making them accessible foractors and audiences with disabilities These theaters are also introduced to audiodescription, captioning services, and stage interpreters and they continue to incorporatethese elements into their work for years to come

 A successful, mid-career, professional artist incurs an injury that results in physical andcognitive impairments In his newly configured body, he worries that he will no longer beable to continue to practice his art, let alone continue to be self supporting He finds outabout and applies for a foundation grant specifically for artists encountering hardships

He receives a significant grant which he puts to use making his studio accessible,working with an occupational therapist, and learning new techniques He is able tocontinue practicing the art that gives his life meaning And he continues to make a livingdoing it

The three data collection methods described in the previous section of this report gathered abroad range of such stories, experiences, comments, and questions Despite the diversity of theparticipants and their backgrounds, the three research activities yielded remarkably consistentmajor themes and sub-themes The triangulation of results across the three qualitative datacollection methods, in fact, supported the validity of our findings and helped articulate a highlevel of detail for each theme Integrating the results across the qualitative studies, the majorthemes and sub-themes are presented below Each major theme is introduced with a summaryand brief discussion of its key points followed by sub-themes To “stay close to the data” – a corevalue of qualitative research – and to remain faithful to the responses of the participants, we have

12

stated these themes, where possible, in the voice of the participants, using a combination ofdirect quotation, paraphrasing, and summary of participants’ responses.

I Developmental issues

“In order for deaf students to experience, consider, and attempt to acquire an artistic life, there is a need for early exposure to various art mediums and the opportunity to explore them to find their niche It needs to be a process that allows the building of self-esteem, the acquisition of historical information that other deaf people have managed to have success in their artistic field of interest, and the opportunity to work with deaf role- models who will effectively teach and work with students using the visual elements needed to successfully teach and enable growth as artists in their chosen artistic field There is also a need to introduce these students to artistic works of other Deaf artists so they can approach the double-consciousness of living in both a hearing and deaf world and knowing that each contributes to the artistic process but that they have artistic materials that are relevant to their life experiences that can also be tapped for their use and exploration as artists.”

As several participants noted, development of a career in the arts is a lifelong path, from learningthat a career in the arts is even possible, to that moment of inspiration that “launches a career,” toformal training, to finding and sustaining career opportunities At every turn of this “arc,” people with disabilities seem to face diminished options, if not outright exclusion Participants worried how young d/Deaf and disabled individuals can envision themselves in arts careers if parents, teachers, and counselors fail to encourage them and if many arts venues are too inaccessible to permit those formative first exposures The participants were virtually united in their

endorsement of professional training as essential but noted that discriminatory admission

practices still prevent many people with disabilities from getting in the door If they do enter training, they may find that the curriculum and technology they need are not offered and that they are excluded from extracurricular opportunities that can enrich training and position

students for career opportunities Participants felt strongly that arts educators need training about disability accommodation, technology, and alternative art forms that disabled artists have

developed Mentors, from inside and outside the disability community and sometimes even from within the family, were also viewed as critical to the development of careers in the arts for peoplewith disabilities

Development of career aspirations

 There is a whole arc of artist development to consider in getting to a career in the arts, from identifying the profession, to training, to being able to remain in it

 A lot of disabled and d/Deaf artists got training later in life and this put them behind in terms of their opportunities and peer group; many d/Deaf individuals discover the arts only when they arrive at the college level

 How do d/Deaf and disabled people become aware that arts is a possible option for them?

It is important to know: Where does the introduction to arts come from – to know you CAN be an artist?

 Incredible work being done, but few children know about it, e.g., children who are blind may not realize that there is a place for them in theater

 People may be inspired to work in the arts after attending an arts event or other

experience Are d/Deaf and disabled people excluded from experiences that can launch a career?

 What has helped people with disabilities and d/Deaf people working in the arts to be who they are, and who have been allies?

 How can schools encourage our sense of freedom to become what we want?

 Some internalize low expectations and self-perpetuate barriers that they have encountered

to arts Many are not picturing what they can be (e.g., dancer), not embracing

possibilities

 Finding role models and mentors is important for developing a career path in the arts.Mentors (disabled or non-disabled, hearing or d/Deaf who “get it”) are significant to success in many ways:

o Getting networked with other d/Deaf and disabled artists, even if in a different medium is important

o Teacher recognition and guidance

o Connecting with non-disabled artists

o Family, especially families with artistic proclivities, can be important mentors

Education/training

 Role of families in providing arts training and support in general

 Importance of parental training: Parents have to fight for “denials” of services, success can depend on having an assertive parent In schools where parents have the ability to do research, to understand and navigate the system, and to advocate for their children on an ongoing basis, the schools respond This happens most frequently in affluent

neighborhoods where one parent is able to stay home with their child and, unfortunately, where schools can afford to pay more attention to individual students

 Role of gatekeepers—or “gateblockers”—to training and art institutions

 We have to get people into professional training programs Very difficult, huge

discrimination, especially at the graduate level

 It is arrogant when admissions committees act like they are LETTING us in, even when our records speak for themselves Do we let them put that attitude out there?

 Children in public schools in poor areas or rural areas are not getting any arts training or exposure at all

 We need exposure in the schools Disabled youth tend to want to be mainstreamed now; they don’t want to do anything that sets them apart (In contrast, some d/Deaf artists see mainstreaming as the problem; see next section.)

 Recruitment problems: Even with publicity, people with disabilities don’t come forward

to learn disability art, e.g., dance What is the vehicle to get people in?

14

 The depletion of support for the arts in general is related to problem of finding,

recruiting, and training d/Deaf artists and artists with disabilities

 Sometimes extracurricular activities (internships, travel abroad, attending performances and exhibits) and vital opportunities such as study abroad programs are not accessible

 Sometimes disability student services or Voc Rehab “decides” what accommodations a student needs in contradiction to what the student knows will be optimal

 Voc Rehab often won’t pay for art supplies

 Very, very few universities have curriculum in place for teaching some of the physically integrated dance techniques or Deaf theatre techniques The theatre and dance companies themselves have to train their own artists Therefore, it is very difficult for disabled people to major in dance performance, for example

d/Deaf-specific educational issues

 Deaf individuals are directed into mainstreamed environments where access to

information is restricted to interpreters in the class room Activities outside of the class room are often seen as an additional cost and it is decided, for the deaf person, that they

do not need these extra activities

 Many of the arts program available early in deaf children’s lives are taught by hearing individuals who do not have any background or understanding of the collective

experiences of deaf people nor have they had any experience using interpreters or trying

to directly work with deaf people Often the easier route for these teachers is to deny access through the audition process or designate minor tasks to the student as a means of accommodation but not to facilitate growth and understanding

 Interpreters in mainstreams schools have not historically been required to meet rigorous standards of excellence for their translation and sign production work These interpreters are the primary role models for deaf students and the acquisition of language, sign

language, and communication skills There is a need for screening to assure that

interpreters working in the educational field, especially at the elementary and high schoollevels

 Educators don’t see Deaf artists as a collective culture, but as a handicap

 Schools are audist controlled and everything there is based on the hearing standard of art Often that standard doesn't work for deaf kids because of their visual focus These

schools do not encourage any type of artistic endeavors outside of their “hearing”

standards, so in some ways, the kids are being repressed from expressing what they reallysee and feel

Educators

 Teachers need training on how to provide accommodations, adapt their curriculum; they assume certain activities are not possible for the deaf or disabled student

 Teachers often not knowledgeable about art career opportunities for people with

disabilities and will therefore discourage disabled students (since an arts career for anyone, disabled or not, is difficult)

 Teachers sometimes don’t know how to interact with disabled or d/Deaf people and not see them as fully rounded human beings

 Sometimes teachers believe that accommodations take away from the artistry of the medium (example: low vision photographers using autofocus)

 Disabled students often not given fair or adequate critiques because teachers don’t know how to evaluate them with their standards and evaluation tools don’t make sense for them

as fundamental to learning dance vocabulary)

 Sometimes we must find a way to do our art and demonstrate that we can do it well before we are allowed to train to do our art It is a backward process

Professional Development

 d/Deaf and disabled artists need on-going professional development opportunities

(especially if impairment status or type changes)

 Disabled and d/Deaf artists need to learn professionalism; if they don’t receive formal training, the artist might not understand their field’s expectations for professional

protocols, level of commitment expected, and what is considered professional behavior

 We need to find the next generation of leaders in our communities The pioneers are worried about succession and passing the torch to continue building on their hard work and progress

II Making a living

“I think we have to recognize the role that government agencies are playing in limiting the potential for careers in the arts for people with disability So whether we struggle and become artists in a ‘DIY’ or solo way, there are systemic barriers that hinder our freedom

of choice and participation in this field, no matter what our personal strength, defiance factor, or talent may be.”

Although the challenges of “making a living” are considerable for anyone pursuing a career in the arts, participants noted the additional struggles of financial survival for people with

disabilities Among the common hurdles listed were: higher medical costs but lower chances of having adequate health insurance because of the lack of secondary employment, less likelihood

of spousal support, and pre-existing condition exclusions; pressures to volunteer or to accept lowpay; grappling with benefit program policies and related paperwork; and the waxing and waning

of health and stamina Some participants harbored hope for new models of support that would honor the value and professionalism of people with disabilities in the arts while addressing the particular difficulties experienced by them Although many reported disappointing experiences

16

with organizations that support/promote artists and/or people with disabilities, others were more optimistic about the future development of creative partnerships.

The business of art

 Nuts and bolts of trying to make a living:

o The paperwork and record-keeping required for earning an income while on Social Security or for tax purposes (if doing art as a business) is daunting, confusing, time-consuming, and like a part-time job in and of itself The amount

of income that one has to keep track of is so small compared with the amount of recordkeeping involved

 Business side, promotion of one’s art, publication, agents

 Disabled artists often asked to do their work for free at various events and pressured to do

so Non-disabled artists are, too, but there seems to be a sense that disabled artists are obligated to be consciousness-raisers or that they’re not really professional artists who deserve to be paid for their time

 Health can be unpredictable, making it difficult to commit to long-term projects, travel,

or full-time work

Government benefits programs

 Dealing with Social Security and vocational rehabilitation and other programs so you canwork in the arts and survive financially

 Difficulties getting paid and maintaining crucial benefits

o Creative payment and income strategies used by artists and presenters, not alwayslegal or providing the most benefit

o System prohibits paying people what they’re worth because of fear of losing benefits

o Social Security doesn’t accommodate the waxing and waning stamina of some disabled people and the sporadic nature of income earning for disabled artists

o Some artists have to refuse payment or take lower payments than they could earn

to maintain benefits

o Grants and awards may count against you in income support programs

 Some artists want information on how to work and KEEP benefits, not how to get off benefits because their reliance on these benefits for health insurance and personal

assiatance (PA) funding is greater than any income they will make, especially since income-earning is sporadic

 The threat of having benefits cuts off creates fear and shut down the creativity and motivation of artists

Health Insurance

 Health insurance and access to it if you are not linked to an institution

 Access to a life partner’s health insurance benefits is not always possible:

o Some disabled people choose not to marry legally because of negative impact on benefits

o In many areas of the country, gays and lesbians cannot have access to their domestic partner’s health insurance.

 Interviewees who are getting older expressed concern about being able to maintain the extraordinary level of stamina and drive needed to maintain their arts careers, play the benefits game, have adequate health insurance, and remain creative It seems like there are issues around aging that need to be addressed

Support from organizations

 Stunning paucity of d/Deaf people and people with disabilities in arts organizations

 Focus is still too often on charity and art as therapy

 What is the role of specialized organizations for arts and disability, like VSA?

 Financial issues of “outsider” art and institutional support

 Arts funding for other under-represented groups need to include disability – Where are the artists with disabilities in diversity initiatives?

 Creative partnerships with organizations can be fostered

 There is the Paralympics model for sports – What could there be for the arts that would

be disability-focused but respectful of quality and professionalism?

III Access issues

“I have been kicked off an airplane because of my ventilator Vents aren’t covered under the air carrier access act, and as such, I cannot guarantee that I will be allowed to travel

to and from events freely as other artists are sure that they can do; I cannot use the private buses that take folks to art-related events in my home town Studio tours, artwalks are all easy for others to participate in and not accessible to me.”

Access, as expected, was a central concern in every discussion of barriers and facilitators to careers in the arts The repeated message was that access was multi-faceted and encompassed structural, programmatic, communication, transportation, energy, and economic issues

Interestingly, access to travel opportunities was repeatedly referenced as critical to career

development in the arts Another recurring point was that access should be infrastructural and incorporated into the planning and implementation of all programs, not only for audiences but for those “on the stage” and “behind the scenes” as well Access was actually an area where many participants had witnessed significant gains over the years, but there was clear consensus that a lot more progress is needed

Architectural

 Architectural barriers to arts facilities: museums, galleries, sound studios, theatres

(onstage, backstage, audience), classrooms, arts colonies, workshops, receptions, arts openings, even informal places artists gather (restaurants, cafes, bookstores, etc.) Even when main areas are accessible, often the bathrooms are not

 A lot of venues where performers start out are very low-budget, bohemian places, and they have the worst physical accessibility but often the most accommodating attitudes

18