This article begins with a personal, pre-Americans with Disabilities Act (ADA) story of employment discrimination and how from it I became involved with the Disability Rights Movement. The narrative then moves into my finding, exploring and discussing the importance of Disability Culture. Finally, thoughts are shared about the intersection of Disability Culture with the ADA.
"Experience with disability is a more ready source of knowledge about the disability to those who have it than to those who do not." (tenBroek, 1966, p. 917).
A Personal Experience Before the 1990 Signing of the ADA
In spring 1981, nine years prior to the passage of the Americans with Disabilities Act (ADA), and before I knew anything about the disability rights movement, I earned my doctoral degree in history at the University of Oklahoma (OU). My field, American intellectual history, with a strong emphasis on reform, offered few job openings that year—they could be counted on one hand. I had no illusions that an OU graduate would be hired for one. But I was lucky. My department hired me into a one-year position to teach freshmen American history survey classes.
In one of those courses, in fall semester 1981, two students with visual impairments came up to me after the first day of class asking if they could tape record my lectures because I spoke so fast. I assured them they could and mentioned, with the goal of making a better connection, that I used a cane. We began talking over the next few weeks and both students introduced me to a new, local grassroots organization that we would today call an independent living center.
The organization, still in its first year, then called the Independent Living Project (ILP), today Progressive Independence, was the first independent living program in Oklahoma (for an explanation of why I am making this distinction, see Brown, 2003b). These two students wondered if I would be willing to attend a meeting and consider volunteering? I swallowed my distaste for meetings and agreed, again in hopes of strengthening the student connection. To my surprise and pleasure, at this meeting, unlike most I then attended, something happened. The ILP staff planned a statewide independent living conference. National speakers, with names I did not then know, but some of you might recognize today—Judy Heumann and Frank Bowe—were to be among the presenters. Sexuality, among other topics, would be addressed. Impressed, I began to volunteer.
When the academic year ended in spring 1982, there was still no job in sight. I sat at home, married, with a young daughter, wondering what to do, when my department chair called and asked if I would be interested in writing a history of a company in Tulsa. I jumped at this chance to have a job and feed my family. To make a long—and much written about (for example, Brown, 2003a)—story as short as possible, I did not get the job. I was informed on a 45-minute phone call, after being verbally hired, that this company did not believe I could write a book because I used crutches. To add insult to this injury, my contact at the company told me perhaps if I had the physique of a football player I would have the stamina to write this book, but since my then 6'4," 160 pound (at best) frame did not resemble that of a football player, I could not do the job.
Insulted, dismayed, and angry, I endeavored to fight this affront. But I could not. No law banned this discrimination. The Americans with Disabilities Act (1990) was almost a decade in the future. And it would not necessarily have helped because this company had no federal funds and fewer than 15 employees. During summer 1982, I began volunteering every day at the independent living project and in the fall I successfully applied for one of two newly funded positions.
An Introduction to Disability Culture
At the ILP, I read as much as I could to learn about this new world of disability rights. I looked in the card catalog at the local library and found books by Frank Bowe. I read Handicapping America. We also got a newspaper-like magazine called the Disability Rag. As an avid reader of the (then) newsprint Rolling Stone I was hooked. The Disability Rag published stories by kindred spirits. I wanted to write for it one day.
I think I learned about disability culture through the Rag, but I cannot be sure. When, in 1994, after receiving a one-year fellowship, the first U.S. award of its kind, to research disability culture, I published the results in Investigating a Culture of Disability: Final Report. I did my best to reconstruct how disability culture came into my life:
Sometime in my personal identity search and its context within the heightening flame of my incendiary involvement as a participant in the Disability Rights Movement I became intrigued, then impassioned, with the notion of a disability culture. In reconstructing this process during the past year or two I have found a 1985 article in the Disability Rag which began to hint at this idea: "Those of us with the capability to communicate are finding that we can channel our frustrations outward to our brothers and sisters, who really do understand disability. I think it's that understanding that defines, for me, The Disability Community." (Hooper, 1985, 5). Several subsequent articles also discussed this concept. (Hirsch, 1987, 38-39; Johnson, 1987; Peters, 1986a, 25; Peters, 1986b, 20).
The linchpin article, as best I can recall came from an interview Rag editor Mary Johnson did with psychologist Carol Gill, which discussed both disability culture and disability pride, two concepts I have worked with and promoted ever since:
A disability culture movement can foster disability pride. It promotes pride in us; it allows us to project a positive image to the public. We renew each other and our strength through shared experiences and rituals. If we express our culture in some unified way, we're signaling; we're communicating what our values, goals, and identity are. Through our culture we can recruit people. When we present a strong image, it motivates people to want to belong. They want to be part of something that powerful. (Johnson, 1987, p. 4)
I had found my passion. I wanted to explore disability culture.
Brief Notes on Disability Culture and the Signing of the ADA
While the Americans with Disabilities Act does not address disability culture or pride in a direct way, it does address issues discussed within this concept, such as historical and social participation, in the introductory section, "Findings and Purposes:"
…individuals with disabilities are a discrete and insular minority who have been faced with restrictions and limitations, subjected to a history of purposeful unequal treatment, and relegated to a position of political powerlessness in our society, based on characteristics that are beyond the control of such individuals and resulting from stereotypic assumptions not truly indicative of the individual ability of such individuals to participate in, and contribute to, society. (Sec. 2 (a) Findings (7)).
In late 1990, after the signing of the ADA, I moved from Oklahoma to California, Judy Heumann, who I first met at that 1982 Oklahoma statewide independent living conference, became my boss. I also worked with other amazing colleagues at the World Institute on Disability, such as Ed Roberts, Debby Kaplan and many others including Lillian, with whom I fell in love. I also understood in a way I never had before a sense of place. The San Francisco Bay Area fostered many reform movements, including Free Speech and what in those days we called Gay/Lesbian, as well as the disability rights movement. It was an incredible place to evolve ideas about disability culture and I did.
Between the start of the University of Minnesota Disabled Student Cultural Center (G. Chelberg, personal communication, April 1992) and recognition of Berkeley disability performance poet Cheryl Marie Wade's artistic contributions with an Arts Solo Theatre Artist's National Endowment for the Arts Fellowship in 1994, I received the first national fellowship to research disability culture with a National Institute on Disability and Rehabilitation Research (NIDRR) Mary Switzer Fellowship. We also had moved in late 1993 from California to southern New Mexico, where Lillian and I created the Institute on Disability Culture (www.instituteondisabilityculture.org).
A couple years later, after one research monograph, a few articles, and a growing list of presentations, both audiences and colleagues asked for a one-sentence definition of disability culture. I did not have one, so I sat down one sunny Saturday morning to try to create one. The result was a Mainstream article, "We Are Who We Are… So Who Are We?" (1996), later re-published in Movie Stars and Sensuous Scars (2003a), in which I shared a one-paragraph definition, which I still use, reproduced below:
People with disabilities have forged a group identity. We share a common history of oppression and a common bond of resilience. We generate art, music, literature, and other expressions of our lives, our culture, infused from our experience of disability. Most importantly, we are proud of ourselves as people with disabilities. We claim our disabilities with pride as part of our identity. We are who we are: we are people with disabilities (Brown, 2003, pp. 80-81)
In Investigating a Culture of Disability, I also built on previous paradigms of disability to create a new one, reflecting post-ADA times and the ascending disability rights and nascent disability culture pride movement. I called it "The Chart: The Disability Rights/Culture/Pride Paradigm" (p. 65). The first column retained the wording of a couple previous charts (see footnote at end of chart); the second column focused on older paradigms, which I lumped into the community assistance/charity/medical model paradigm and the third column reflected the developing paradigm I called disability rights/culture/pride.
|COMMUNITY ASSISTANCE/MEDICAL/ CHARITY PARADIGMS||DISABILITY RIGHTS CULTURE/ PRIDE PARADIGM|
|DEFINITIONS OF PROBLEMS||Physical or mental impairments; lack of socio-economic, educational, political, and cultural skills||Dependence on professionals, family members, and others; hostile attitudes and environments; lack of legal protections or recognition of inherent worth of disabled people|
|LOCUS OF PROBLEMS||In individual ( who is broken or sick and needs fixing or curing)||In socio-economic, educational, political, and cultural environments and perceptions|
|SOCIAL ROLES||Patients, clients, charity recipients, non-existent||Family and community members, customers, coworkers, advocates, same as anyone else|
|SOLUTIONS TO PROBLEMS||Professional and volunteer interventions and treatments||Equitable socio-economic, educational, political, and cultural options|
|WHO CONTROLS||Professional and/or volunteer||Individual or group of individual's choice|
|DESIRED OUTCOMES||Maximum self-care; No social misfits||Pride in unique talents and attributes of each individual and positive disability identity|
|Parts of this chart have been extrapolated from DeJong, G.(1978). The movement for independent living: Origins, ideology, and implications for disability research. Boston: Tufts-New England Medical Center, Medical Rehabilitation Institute; Ibid. (1983). Defining and implementing the independent living concept. In N. Crewe & I. K. Zola. (Eds). Independent living for physically disabled people. San Francisco: Jossey-Bass; Racino, J. A. (1992). Living in the community: Independence, support, and transition. In F.R. Rusch, L. DeStefano, J. Chadsey-Rusch, L.A. Phelps, & E. Symanski, (Eds.). Transition from school to adult life: Models, linkages, and policy. Sycamore, IL: Sycamore; and M. Shreve. (1994). In Independent living and the Rehab Act: Regional training. Houston: National Council on Independent Living/Independent Living Research Utilization.|
Freedom of Movement
At the end of the 1990s, I was honored to write a monograph for ILRU (Independent Living Research Utilization) called Freedom of Movement: Independent Living History and Philosophy (2000). The title came from a 1940s group of disabled veterans in my hometown of Kalamazoo, Michigan, who created a city-sponsored downtown curb ramp program. In their observations of those who used these curb ramps, which I wrote about in a 1999 Disability Studies Quarterly issue, they used the phrase "freedom of movement" to describe those with disabilities, women pushing strollers, delivery men, and bicyclists as some of those using these curb ramps. In this monograph I also shared a series of hopes in relation to independence in the early part of the new millennium. My second hope for the early-twenty-first century was:
The recognition among more people with disabilities and the mainstream population that there is such a thing as Disability Culture, the movement by people with disabilities to infuse our own experiences into all aspects of everyday life, as most easily seen now in books, movies, music, and other expressions of art (p. 57).
This desire for recognition of disability culture has succeeded beyond my wildest expectations. From almost nothing about Disability Culture out in the world in the late 1980s and early 1990s, "Disability Culture" is now included in conference titles and agendas, coursework, books, and other publications. I have documented internet searches on Yahoo and Google search engines for "Disability Culture," for a number of years. The most recent search (see Figure 1, "Identifying Disability Culture" below), in March 2014, returned 76,300 hits on Yahoo and 74,800 returns on Google.
|When entering "disability culture"|
|43,700||April 9, 2008||280,000|
|59,400||June 23, 2008||347,000|
|64,600||Sept. 5, 2008||429,000|
|54,100||Oct. 29, 2008||286,000|
|49,300||March 21, 2009||384,000|
|58,500||Sept. 8, 2009||381,000|
|61,700||Feb. 13, 2010||296,000|
|43,900||Sept. 16, 2010||41,000,000|
|161,000||Jan. 22, 2011||39,500,000|
|12,900,000||Aug. 2, 2011||50,700,000|
|215,000||Sept. 4, 2011||68,900|
|104,000||Sept. 10, 2012||93,300|
|97,800||Sept. 7, 2013||**|
|74,800||March 8, 2014||76,300|
|** No returns showed up that particular day.|
The reasons I believe Disability Culture is so important, simply put, are:
- If we do not understand our culture(s), how can we expect others to, let alone understand why our culture is important to us?
- When we understand our culture, we can use examples from it to explain our history, advocacy, talents, and resources, and why there are many reasons for us to be proud of who we are—both as individuals and as a group.
The remainder of this essay will focus on #2 above, which correlates to #1. For example, in an oral history of early disability rights advocates in New York, a summary of their statements included:
Many interviewees reflect on the process of developing a disability identity and a sense of belonging to a disability community. Several explore the concept of disability culture and its expression in the arts and in media, and theoretical explorations of disability by scholars and educators. Interviewees who have pioneered the fields of disability scholarship, arts, and ethics point out the contributions of disability studies to the broader society in fostering new and more complex ways of thinking about the body, about normality, about crucial ethical issues relating to abortion, euthanasia, and physician-assisted suicide; and in contributing a unique disability perspective to scholarship in history, literature, and cultural studies (Lage, 2004).
While the ADA is not directly referenced in the above statement, the Findings statement, about stereotypes of a lack of "ability of such individuals to participate in, and contribute to, society" is clearly contraindicated by these examples and in this fashion contributes to understanding one reason why the ADA was needed to counterbalance these inaccurate assumptions. Some (of the many) examples of the talent, resources, and disability culture thriving today include:
- Beethoven's Nightmare (http://www.beethovensnightmare.com/, 2013): Billed as the only deaf rock and roll band in the world in one of their songs, "Turn It Up Louder," which can also be found as a video, they sarcastically state, "And if you can't understand all the words, All we need to do is turn it up LOUDER" (https://www.youtube.com/watch?v=2WkfI9GH_AI&feature=kp).
- Hiljmnijeta Apuk, Little People of Kosovo (https://www.youtube.com/watch?v=veQ6w5ZR3Vc): An attorney, who is also an artist who received a 2013 "United Nations Prize in the Field of Human Rights," Apuk is co-founder of Little People of Kosovo. She works through her art to promote what she calls "authentic culture" of people with disabilities (Selection Committee http://www.un.org/News/Press/docs/2013/hr5164.doc.htm).
- Disability Pride Parade: A short video of the 2009 Chicago Disability Pride Parade, the oldest, ongoing annual pride celebrating the anniversary of the signing of the Americans with Disabilities Act in 1990 (Little, 2010).
- Loud, Proud and Passionate!: This music video from the U.S. 5th International Women's Institute on Leadership and Disability (WILD) celebrates women throughout the world through song and story, sharing diverse languages, disabilities, and vocations (Mobility International, USA, 2011).
- Sean Forbes, Perfect Imperfection: This first album from a deaf hip hop artist, who grew up around the music industry in Detroit, Michigan. I use "Let's Mambo" a lot because it is a fun dance piece (which also happens to feature Marlee Matlin (Forbes, 2013, 2011).
- Silver Scorpion: A comic book celebrating an Arabic super-hero born from losing his legs from land mine. Created by an international youth group, the Silver Scorpion also became an animated series available via Hulu. (Silver Scorpion, 2011).
- Staff Benda Bilili: A group of street musicians, many of whom had polio, and all of whom have disabilities, from Congo, who became famous internationally, especially in France and Europe. Benda Bilili means "look beyond appearances," and in addition to their music a documentary about the band premiered at the 2010 Cannes Film Festival. (Staff Benda Bilili, 2009-2014).
- Beauty is a Verb: The New Poetry of Disability: A groundbreaking anthology that presents the work of both modern poets who have and sometimes write about disability and pioneering forerunners, such as Josephine Miles and Larry Eigner (Black, Bartlett & Northern, 2011).
- Olimpias: The brainchild of artist, academic, and cultural worker, Petra Kuppers and a collective of many other artists, who explore "art/life, cross-genre participatory practices, arts for social change and disability culture work" (http://www.olimpias.org/).
- Krip-Hop Nation: In 2005, activist Leroy Moore challenged the Hip-Hop world with "Hip-Hop Hear This!" an anthem for a new way of thinking and life then called "Crip-hip-hop," which concluded, "Hip-hop hear this! You're out of compliance!" Krip-Hop has introduced the music world to the prodigious musical talents of many individuals with disabilities throughout the world. It has also challenged standard conceptions of sexuality (Sins Invalid) and confronted police brutality toward individuals with disabilities (Broken Bodies, 2011). Look for a book by Moore about Krip-Hop Nation in the next few years (Moore, 2012).
In 2015, Disability Culture is alive and thriving. In a 2014 book of writings from modern disability activists called Criptiques, editor Caitlin Wood announces in the Introduction, "Crip is my culture and it's where I want to be….Welcome to Criptiques: a space of shameless flaunting and significant contribution to crip culture by crip culture." (pp. 2, 3). In another chapter, Lydia Brown (from her provocative website, Autistic Hoya) writes:
The concept of disability pride, which has existed for decades in an organized fashion, is revolutionary in its biting response to the paternalism and discursive constructions of disability popular in our society. The idea that people with deformities, people with visible physical disabilities, and people with neurological or mental disabilities are capable not merely of accepting themselves but of publicly proclaiming their pride in being disabled is anathema to a society in which deviation and divergence from neurological and physical typicality is labeled pathology and defect. (Brown, 2014, pp. 42-43)
The ADA at 25 and Disability Culture
Almost fifty years after scholar, lawyer, and advocate Jacobus tenBroek declared, in a law journal article, "Experience with disability is a more ready source of knowledge about the disability to those who have it than to those who do not." (tenBroek, 1966, p. 917), Rosemarie Garland-Thomson wrote:
One major aim of all of my own work in both literary and feminist studies is to show that the always overdetermined metaphoric uses of disability efface and distort the lived experience of people with disabilities, evacuating the political significances of our lives and mitigating the influence of disability culture (Garland-Thomson, 2005, p. 1565).
As disability activists and others celebrated the 25th anniversary of the signing of the ADA in 2015, the words of Criptiques author and blogger, Emily Ladau resonate:
It is my hope that disability identity can be a source of pride to many, and that we can celebrate disability as a culture rather than as something secondary, something to be dangled cautiously at arm's length.…[Disability] is simply another part of my identity, both because I take pride in it and because I accept it as part of me, whether you do or not (Ladau, 2014, p. 55).
In 1990, I was invited to the signing celebration of the ADA in Washington, D.C. I did not go. Not because I did not want to, but because I had a prior commitment in a different part of the country. It seemed to me that the whole point of the ADA was to get on with our lives and so I chose to honor that previous commitment and miss one of the highlights of the disability rights movement of my time.
I am still not sure that was the most appropriate choice, but it was a choice I had, as opposed to many people with disabilities who have been tortured, killed, beaten, institutionalized, un- and undereducated and un- and underemployed. I believe in the power of disability culture to continue to support and collaborate with the goals of the ADA: to integrate us, with disabilities, visible and hidden; to defy stereotypes of beauty; and to explore creative ways to participate in a society that, despite the progress of the past 25 years, still has a long way to go.
In 1994, when we created the Institute on Disability Culture, we conceived this mission statement/vision: "Promoting pride in the history, identity and cultural activities of individuals with disabilities throughout the world" (Institute on Disability Culture). It remains my guiding principle. It is the way I combine my passion for disability culture with my passion for disability rights, which is in actuality, a passion for human rights, which in turn is what I believe the Americans with Disabilities Act is all about.
- Americans With Disabilities Act of 1990, Pub. L. No. 101-336, §2, 104 Stat. 328 (1991). Retrieved from http://www.eeoc.gov/eeoc/history/35th/thelaw/ada.html.
- Apuk. H. (2011). Happy New Year. Retrieved from https://www.youtube.com/watch?v=BpeHvOydSkE.
- Black, S., Bartlett, J. and Northen, M. (2011). Beauty is a verb: The new poetry of disability. El Paso, TX: Cinco Puntos Press.
- Beethoven's Nightmare. (2013). Retrieved from http://www.beethovensnightmare.com/.
- Beethoven's Nightmare. (2012). Turn It Up Louder. Retrieved from https://www.youtube.com/watch?v=2WkfI9GH_AI&feature=kp.
- Broken Bodies-PBP: Police Brutality Mixtape. (2011).
- Bowe, F. (1978). Handicapping America: Barriers to disabled people. New York: Harper & Row.
- Brown, L. (2014). Disability in an ableist world. In C. Wood, ed., Criptiques, San Bernardino, CA: May Day Publishing, pp. 37-45.
- Brown, L. (2011-2015). About. Autistic Hoya. Retrieved from http://www.autistichoya.com/p/about.html.
- Brown, S. E. (Summer 1999). The curb ramps of Kalamazoo: Discovering our unrecorded history. Disability Studies Quarterly, 19(3), pp. 203 05.
- Brown, S. E. (2000). Freedom of Movement: Independent Living History and Philosophy. (2001). Houston: ILRU. Retrieved from http://www.ilru.org/html/publications/bookshelf/freedom_movement.html.
- Brown, S. E. (1994). Investigating a Culture of Disability: Final Report. Las Cruces, NM: Institute on Disability Culture.
- Brown, S. E. (2003a). Movie stars and sensuous scars: Essays on the journey from disability shame to disability pride. New York: People with Disabilities Press.
- Brown, S. E. (2003b). "The walkout." Movie Stars and Sensuous Scars: Essays on the Journey from Disability Shame to Disability Pride. New York: People with Disabilities Press, pp. 25-34.
- Brown, S. E. (1996). We Are Who We Are… So Who Are We?" Mainstream: Magazine of the Able-Disabled, 20 (10), (Aug. 1996), pp. 28-30, 32.
- Disability Rag. (1980-1996). A little history about this website. Retrieved from http://www.raggededgemagazine.com/.
- Forbes, S (2011). Let's Mambo. Retrieved from https://www.youtube.com/watch?v=w2KYAlcTQno.
- Forbes, S. (2013). Perfect Imperfection. Retrieved from http://deafandloud.com/.
- Garland-Thomson, R. (Winter 2005). Feminist Disability Studies Signs: Journal of Women in Culture and Society, 30(2), pp. 1557-1587. Retrieved from http://www.jstor.org/stable/10.1086/423352.
- Hirsch, K. (May/June 1987). Studying culture. Disability Rag, pp. 8, 38-39.
- Hooper, E. (August 1985). Seeking the disabled community. Disability Rag, pp. 6, 4-6, 8.
- Institute on Disability Culture. (1993-2014). Mission statement and vision. Retrieved from http://www.instituteondisabilityculture.org/.
- Johnson, M. (1987), Emotion and pride: The search for a Disability Culture. Disability Rag, January-February, pp. 4-10.
- Krip Hop Nation. (no date). Poor Magazine. Retrieved from http://www.poormagazine.org/krip_hop.
- Ladau, E. (2014). What should you call me? I get to decide: Why I'll never identify with person-first language. In C. Wood, ed., Criptiques, San Bernardino, CA: May Day Publishing, pp. 47-55.
- Ladau, E. (no date). Words I Wheel By. Retrieved from http://wordsiwheelby.com/.
- Lage, A. (2004). Disability Rights and Independent Living Movement Oral History Project. Regional Oral History Office, The Bancroft Library, University of California, Berkeley. Retrieved from http://content.cdlib.org/view?docId=hb5c60042m&brand=calisphere&doc.view=entire_ text.
- Little, L. (2010). Disability Pride Parade. Retrieved from http://www.youtube.com/watch?v=mXAwfg0jgdU&feature=related.
- Mobility International, USA (2011). Loud, proud and passionate! Retrieved from https://www.youtube.com/watch?v=uxxomUVsSik.
- Moore, L. F. (2005). Hip-Hop hear this!
- Moore, Jr., L. F. (June 2012). Krip-Hop Nation is Moore than music. Wordgathering: A Journal of Disability Poetry, 6(2). Retrieved from http://www.wordgathering.com/issue22/essays/moore2.html
- The Olimpias Project. (no date). http://www.olimpias.org/.
- Peters, A. (April 1986a). Developing a language: Naming is power. Disability Rag, pp. 7, 25.
- Peters, A. (May/June 1986b). Developing a language: What about "gimp?" Disability Rag, pp. 7, 20.
- Rolling Stone. http://www.rollingstone.com/.
- Silver Scorpion. (2011). Retrieved from http://www.scribd.com/doc/54720383/Silver-Scorpion and http://www.hulu.com/watch/361783.
- Sins Invalid: An Unshamed Claim to Beauty in the Face of Invisibility. (no date). Retrieved from http://www.sinsinvalid.org/
- Staff Benda Bilili. (2009-2014). Retrieved from www.staffbendabilili.com/.
- tenBroek, J. (1966). The right to live in the world: The disabled in the law of torts. California Law Review, 54(2), 841-919. Retrieved from http://scholarship.law.berkeley.edu/californialawreview/vol54/iss2/22.
- United Nations. (2013). Selection Committee announces 2013 winners of United Nations Human Rights Prize. Retrieved from http://www.un.org/News/Press/docs/2013/hr5164.doc.htm.
- Wood, C., Ed. (2014). Criptiques. San Bernardino, CA: May Day Publishing.
- Wood, C. (2014). Introduction: Criptiques: A daring space. In C. Wood, ed., Criptiques. San Bernardino, CA: May Day Publishing, pp. 1-3.