Posts Tagged ‘Disability Culture’

Leaders in Disability Culture

March 12th, 2010 DBWriter

Disability culture has several transformational leaders who can be inspirational, charismatic and intellectual. In this part of my paper I present three disability culture leaders; Ed Roberts, Justin Dart, and Laura Hershey. All three of these leaders are highly respected in the disability community.

ED ROBERTS – “The Father of Independent Living”

Ed Roberts was a disability rights leader who became disabled at age 14 due to polio. Polio left Ed with quadriplegia; he couldn’t move below the neck, with the exception of a single finger, and used an iron lung in order to breathe. His doctor stated that Ed would be better of if he were dead, but Ed felt differently. He disliked stereotypes, and was determined to live a happy life. He wanted people to understand that disability isn’t tragic or sick, and that the last thing persons with disabilities needed was pity. (VCIL,1995)

Talk show host Larry King interviewed Ed once, introducing him as “a victim of polio”, but Ed was quick to clear up that misconception by saying, “I am not a victim of polio in any sense of the word.” He also made sure that Larry King knew that his disability didn’t keep him from living his life. Ed’s motorized wheelchair, along with a portable respirator, opened the world for him. Some simple accommodations increased his accessibility to the world, things like curb cuts in the sidewalk corners. Ed is responsible for getting some of America’s first curb cuts placed into sidewalks at Berkeley, California. Ed pointed out that curb cuts were also a convenience to millions of others, such as parents pushing baby strollers or seniors.

The year 1962 found Ed talking his way into the University of California at Berkeley, an unprecedented event in college history. He succeeded in becoming the first student with a ’severe’ disability at U.C. Berkeley. He slept in an iron lung about the size of a telephone booth at the Cowell Hospital on campus, and attended classes during the day. The local media was quick to report Ed’s actions, with one headline reading, “Helpless Cripple Attends UCH Classes.” I don’t think that the University of California, or any other university for that matter, could have been prepared for what happened next. (VCIL,1995)

Ed’s actions at school quickly inspired several other students with disabilities described as ’severe’ to apply and attend U.C. Berkeley – nearly a dozen of them. They quickly formed a group which became known as “The Rolling Quads”, and began work on a program to defeat barriers to their education and lives. They worked to get ramps placed on campus housing and elsewhere on campus. The Rolling Quads also set up a 24 hour emergency wheelchair repair service, and hired attendants too assist them. Ed’s work, leadership and the work of his followers became the basis of the Independent Living Centers that America uses today. Children who have chronic illnesses, persons with AIDS, and senior citizens all benefit from the Independent Livings Centers as they are today. The centers help to keep people out of the institutions they would otherwise ‘live’ in. Removing the medical approach to disability, illness and aging helps people to live without treating them as a ‘case.’

Ed went on to teach political science at Berkeley. He was also appointed Director of California’s Department of Rehabilitation, the very Department of Rehabilitation that had denied him services in the past. When Ed left U.C. Berkeley, the university was the first one in the nation to have a Disabled Students Program funded by the federal government. By the time Ed left the Department of Rehabilitation in 1983, the department had 2,500 employees and a budget of $140 million a year. Ed used his position at the Department of Rehabilitation to promote the Independent Living Centers that he and the Rolling Quads had begun. (VCIL,1995)

As director of the Center for Independent Living, Ed helped to create more than 400 national and international centers which served and advocated for persons with all disabilities. During his time at the center, the organization’s budget grew from $40,000 a year to over a million dollars per year. I think that Ed could never do enough – he also founded the World Institute on Disability, an organization run by persons with disabilities with the goal of eliminating ‘handicappism’ through equal opportunity and participation in society.

Ed Roberts was a MacArthur Fellow, an N. Pike awardee, a Giraffe, the unquestioned father of the Independent Living Movement, a world traveler with a million miles of travel, a T.V. star, a father and a karate student. Ed Roberts had vision; he inspired millions of persons with disabilities to do their best and live life. He was a charismatic leader who could also inspire his followers intellectually. (VCIL,1995)

Ed Roberts died on March 14th, 1995. His examples of life, living and leadership will also be a part of disability culture and history, and I am one of the many, many persons with a disability who finds his leadership worth following. Upon his death, Justin Dart, who we might view as a knight for Disability Rights, said:

“Each one of us is a prophet, each one of us a leader in the struggle to focus the full force of science and free enterprise democracy on the empowerment of individual humans. Let us unite as never before. Let us go forward in the spirit of Ed Roberts, with love, with truth, with courage, with absolute commitment to a society by all.” (VCIL,1995)

JUSTIN DART – A Knight for Disability Rights

Justin Dart worked out of a two bedroom apartment, with office equipment and pile after pile of paperwork, to change the world and lives of persons with disabilities forever. He never seems to get tired, and had a highly dedicated group of followers who see him as the “Martin Luther King, Jr. of the disability rights movement.” Justin is a very inspirational source for his followers. “He’s all peace and tranquility, but yet he is able to move mountains,” said Paul Marchand, a Washington Lobbyist concerning Justin. (Liberty Resources, 2002)

The one thing that Justin worked for the most was the removal of barriers to the lives of persons with disabilities. He didn’t care if he had to travel to every state in America in order to get grassroots support for the Americans with Disabilities act, and I understand that he did. Justin worked against legislation that would have limited advocacy by charities. He also found himself working to create a new national organization for persons with disabilities. No matter what he was doing, Justin always managed to make more friends than enemies, and had a unique way of bringing people together.

Like Ed Roberts, Justin Dart also contacted polio when he was young, and used a wheelchair. Interestingly, Justin didn’t go through a period of denial or depression after becoming disabled. So many temporarily able-bodied persons do go through denial or depression upon becoming disabled. Justin, however, has only this to say about his disability, “I measure the good part of my life from the time I got sick.” I find his statement to be extremely inspirational because I have had some struggles with my own disability; even though I was born with it, it didn’t show until I was in my late teenage years. The message of accepting yourself as you are is powerful.

(Liberty Resources, 2002)

Justin Dart was a powerful leader. According to Catherine McDermott, president of Grantmakers In Health, “Justin Dart led an enormous portion of the non-profit sector.” In fact, Justin was presented the John W. Gardner Leadership Award by the Independent Sector, a national coalition of non-profit groups. Justin didn’t tie himself to one single non-profit organization, he was a recognized leader among all of the disability organizations. Justin did try to work with just one organization at one point, the Dart Foundation, back in the 1960’s; it didn’t last long. With his wife, Yoshiko, Justin tried to make the Dart Foundation fly, but gave it up after a few years because he disliked the paperwork and rules. Justin was very, very good at being a leader, to the point where he would rather lead than have an employer.

Justin found joy in lobbying, knowing that he would have to be worried about making Board members or grant makers uncomfortable. He filled a valuable function by doing the things that charities were not easily able to do, quicker than they could. People from various organizations within the disability movement all agreed that Justin’s independence was an asset to the overall movement. His independence within the disability rights movement helped him to live a lifestyle that showed respect for others. (Liberty Resources, 2002)

Justin didn’t hold his own financial resources aside from his efforts. He didn’t own either a house or a car, and his apartment was described as “frugal.” Yoshiko once stated, “I don’t go out and buy a diamond ring and drive a Cadillac and have lots of maids…I try to live so that people in the world can live like we can.” Justin did inherit some money from his parents when they died, though, and he and his wife lived off of that money. Yoshiko invested some of that inheritance, and they had enough money to travel.

Justin once traveled to Saigon, South Vietnam, where he visited an institution for children who had polio. The institution consisted of a large shed with a tin roof. Inside, children with bloated bellies and emaciated arms and legs lay on a floor covered with flies, urine and feces. Justin went back to his hotel and got drunk. He decided to dedicate his life and full-time efforts to seeking justice for persons with disabilities; the year was 1966. “I realized that there was more to this than being a big businessman, getting good P.R., and hiring handicapped people and getting your picture in a magazine, There was a real issue there. There was real discrimination, real people dying real deaths, and there was real evil there,” said Justin of his expanded awareness. (Liberty Resources, 2002)

Justin Dart was the chairman of the President’s Committee on Employment of People with Disabilities from 1989 to 1993, but stepped down so that he would have more time for his advocacy work. During the years 1988 through 1990, Justin was the chair of the Congressional Task Force on the Rights and Empowerment of Americans with Disabilities, which advised Congress on the Americans with Disabilities Act. He was a member of the National Council on Disability from 1982 to 1986, and again from 1988 to 1989. Justin served six Presidential and Congressional appointments. He was present when the Americans with Disabilities Act was signed, and President George Bush Sr. gave Justin the first pen he used to sign it.

Justin’s willingness to share his experiences made him a transformational leader because of his openness. He was a charismatic leader, one people want to be like, an inspiration because of his tireless efforts, and an intellectual leader because of his endless work to get us to be as creative as we can. Justin Dart died on June 22, 2002, leaving a major hole in the cloth of disability culture; he will be greatly missed.

While I don’t expect that I will do as much for persons with disabilities, I won’t hesitate to use Justin as an example. Where we will find someone to do all of the advocacy and other work that Justin Dart did I cannot foresee. Leaders in disability culture help to make our lives better, and while Ed Roberts and Justin Dart were jewels of disability leadership, so is Laura Hershey.

LAURA HERSHEY – A Leader for Rights and Respect

Laura Hershey is an advocate for disability rights, she is a writer and a poet, and she is a trainer with more than fifteen years of experience working professionally in the fields of disability rights and journalism. Her resume is impressive, and points out her abilities to lead. Laura has worked as an Accessible Housing Specialist for the Denver Commission for People with Disabilities. She designed and implemented programs that find, assess and upgrade accessible rental housing. She was an owner/consultant of AssisTeam Consultants, which provided expert support to human service agencies. Laura has also worked as a Home Health Program Coordinator for H.A.I.L., inc. where she developed programs to support disabled individuals in managing services; she also supervised contract workers. (Hershey, 2002)

As an activist Laura has worked to support American Disabled for Attendant Programs Today, Tune Jerry Out, and Not Dead Yet – all three groups of which are highly relevant and important parts of disability culture. She served as President for the Board of Directors at the Denver Center for Independent Living. Laura was also awarded a grant through the Thomas J. Watson Fellowship in order to study England’s disability rights movement.

As a writer, Laura is impressive. She has many writings which are relevant to disability culture that have been published. Some examples of her published writings include:

  • “Pass Hits a Wall”, published in New Mobility. It is a story exposing Social Security’s mishandling of work incentive programs.
  • “Supreme Indecision”, published in POZ. It is an article analyzing court rulings on assisted suicide.
  • “False Advertising”, published in MS. Magazine. It is an article critiquing charity advertisers’ portrayal of disabled women.
  • “Exit the Nursing Home”, published in Progressive. It is an article about the growing movement against institutional “care.” (Hershey, 2002)

The list of her publications grows, seemingly daily, through news media, magazines, and her own web site, called “Crip Commentary.” Laura has a B.A. degree in History from Colorado College, and has received an Honorary Doctorate of Humane Letters from Colorado College. In November of 1996, she received an EDI Award in Print Journalism from National Easter Seals Society, thanks to an article she wrote titled “China Diary.” In May of 1993 she received the Women on the Move award from the League of Women Voters of Denver, Colorado. I have wondered how Laura found it within herself to become such an impressive leader; I found an answer in one of Laura’s poems, titled “You Get Proud by Practicing.” In her poem Laura says,

“You do not need

A better body, a purer spirit, or a Ph.D.

To be proud.

You do not need

A lot of money, a handsome boyfriend, or a nice car.

You do not need

To be able to walk, or see, or hear,

Or use big, complicated words,

Or do any of those things that you just can’t do

To be proud. A caseworker

Cannot make you proud,

Or a doctor.

You only need more practice.

You get proud by practicing.


There are many many ways to get proud.

You can try riding a horse, or skiing on one leg,

Or playing guitar,

And do well or not so well,

And be glad you tried

Either way.

You can show

Something you’ve made

To someone you respect

And be happy with it no matter

What they say.” (Hershey, 2002)

I think that Laura is right, doing your best means practicing what you do, and that can help to develop a sense of pride within you, a pride that will be there “no matter what they say.” I found a few examples of Laura’s writings that support her belief that we should be proud of who we are, no matter what others may say. One written support of disability pride that I found came in the form of a letter that Laura wrote to Mr. Robert Ross, CEO of the Muscular Dystrophy Association, on May 27th, 2001.

The Muscular Dystrophy Association (MDA) is responsible for the continued use of Jerry Lewis, and his intense hatred of persons with disabilities, in their Labor Day Telethon. Laura wrote a letter to the CEO of the MDA, saying that she has waited, indeed expected, a statement from the MDA that would “attempt to explain, clarify, or somehow rationalize statements made last Sunday by Jerry Lewis.” She couldn’t understand why the MDA would remain silent, giving tacit approval of Mr. Lewis’ hateful remarks. She points out that on CBS Sunday Morning, Mr. Lewis was asked what he thought about the persons with disabilities who do not like his pity promoting telethon tactics. Wanting the CEO of the MDA to understand how Jerry Lewis treats persons with disabilities, Laura quotes him in the letter: (Hershey, 2001)

“Pity? You don’t want to be pitied because you’re a cripple in a wheelchair? Stay in your house!” – Jerry Lewis

Laura’s response to both Jerry Lewis’ disability hatred, and the MDA’s lack of concern is:

“Mr. Ross, is it now the official policy of MDA that pity is the only possible response/attitude toward disability; and that people who want more from life should “stay in [our] house[s]? In other words, does MDA support Jerry Lewis’ insistence that we, people with disabilities, should quietly accept other people’s pity, regardless of the cost to our dignity and our quest for equal citizenship?” (Hershey, 2001)

Laura is an inspiration to anyone with a disability that doesn’t want to be treated with pity. Her strength and pride and ability to write to the CEO of the MDA and make a statement for persons with disabilities is something I will always admire, even as I have tried to do the same with the news media when they frequently stereotype persons with mental health disabilities. In another example of inspirational leadership, Laura wrote an article titled, “Accessible Homes Mean Barrier-Free Relationships”.

In her article, Laura describes an experience she had when she went to a friend’s birthday party. She showed up with her partner, parked the van, went to the door and entered. They gave their friend her present, and then sat around with other guests, listening to music and drinking wine. Around eleven o’clock, they left. “What’s the big deal?”, Laura asks. (Hershey, 2000)

The big deal, writes Laura, is that many persons who use wheelchairs can’t live that scenario, and the only reason that she was able to attend that party is because the friend that was having a birthday party was nice enough to have installed a ramp by the front door so that she could get into the house. “American homes are traditionally designed with entrances that require climbing anywhere from two to twenty stairs”, Laura writes. For people who use wheelchairs, and other forms of adaptive equipment such as scooters, stairs at the door means no time spent with a friend, or at a job interview, or many other public places.

Exclusion hurts, and articles like the one that Laura published help nondisabled people to become more aware of the exclusion that persons with disabilities experience because of inaccessible buildings. Being kept out of a public place is one very bad experience for anyone who cannot climb stairs. Being kept out of a friend’s home because the building standards still contain the placement of steps before a door is far more hurtful. Laura’s leadership through writing is often intellectual in that it makes us stop, re-examine what we are doing, and attempt to find creative answers to problems that have a negative impact on persons with disabilities. (Hershey, 2000)

In my final example of Laura Hershey’s ability to lead through writing I read an article that is very relevant to America’s stance on terrorism, titled “War and Peace are Disability Issues.” Laura wrote this article not quite a month after the attack on the World Trade Center. She points out that in writing the article, she expressed her response from a disability culture perspective.

After the initial shock of the attack, Laura began to pay particular attention to the effect it was having on persons with disabilities. She points out that an undetermined number of workers with disabilities died in the World Trade Center, right next to their nondisabled counterparts. She found that persons with disabilities who live in Manhattan continued to face new barriers, including disruptions in services and aggravated health conditions due to the city’s damaged infrastructure. An estimated 2500 New Yorkers will acquire disabilities because of injuries, toxins, trauma and stress related to the terrorist attack; Laura writes that she believes this estimate to be low.

On a note that I hadn’t expected, Laura reveals her leadership thinking by pointing out that persons with psychiatric disorders had a particularly tough time in dealing with the attack. The media and government officials made living with the attacks as a person with a psychiatric disorder much, much more difficult through the use of words like “madmen”, “insane” and “senseless” in describing the attackers. People with depression, anxiety, and post traumatic stress disorder have psychiatric disabilities; terrorists do not, and the use of words like “madmen” promotes mental health stigma, making life harder for people who actually do have a mental health disability. Laura writes in her article, “Clearly the perpetrators were not people with psychiatric disabilities, and it bears repeating that people with such disabilities are NOT any more likely to commit violence than those without.”

With the disability perspective in mind, Laura writes that there is a huge danger in the form of skyscrapers with no elevator service during a crisis. Laura says that she is still haunted by images of disabled persons being left behind as the crisis developed. Some writers suggested that wheelchair users and other people with limited mobility have no business working in a skyscraper, scapegoating persons with disabilities even as other people were honored. Laura writes that “in a more reasonable response, some architects and advocates have begun discussing the need to develop new kinds of evacuation systems.”

I admire Laura’s ability to not only think consistently from a disability perspective, but her ability to put that perspective into words, publish them, and make sure that they are heard by persons who might work for change to the benefit of persons with disabilities. Her ability to lead through use of inspirational leadership, and intellectual leadership as well, has me watching what she writes more closely in hopes that I might emulate her abilities. Of the three disability leaders I have written about in this paper, Ed Roberts, Justin Dart, and Laura Hershey; I admire Laura the most. Perhaps I will have the opportunity to meet her one day. With disability leaders like these, persons with disabilities have a growing opportunity for equal participation in American society.

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Disability Culture

March 12th, 2010 DBWriter

Disability Culture is a continuously changing, wonderfully entrancing part of understanding who persons with disabilities are. To understand Disability Culture, I reached for some understanding of the subject from the likes of Barbara McKee, Stephen Brown and Cheryl Marie Wade. In this section, I respond to each of these people and their statements on Disability Culture, I also present my own writings on Disability Culture. I begin with Barbara McKee’s writing on the subject.

Barbara McKee, in writing about Disability Culture states, “Only people who are disabled live the way we do and are treated the way we’re treated… Disability Culture is indiscriminate and based upon a twist of fate as to when you join. It’s the only culture that works that way.” Barbara also feels that there are common threads between different cultures, such as the battles for housing, jobs and rights that “Black Culture” and “Disability Culture” are both fighting. Culture and Identity are not just liberal arts catch-words, they are based on history and emotion, and are what humanity is made of; they cannot be separated. There are many views of what Disability Culture is. (McLaughlin, 2001)

International perception of the word “disability” varies from place to place, and so does the meaning of the word “culture.” Maybe the most recognized definition of disability in the world is that of someone who has a “major life impairment preventing her from participating easily in a major activity” such as walking, hearing or thinking. There are hundreds of definitions of disability in the world, dozens in America alone, and the same is probably true for the word “culture.” Use of the words “disability” and “culture” together expands the possibilities for definition. (Brown, 2001)

Stephen Brown, Ph.D., offers a definition of Disability Culture in the Institute on Independent Living Newsletter; “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 and 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.” Dr. Brown goes on to make several points in relation to Disability Culture.

Dr. Brown first points out that Disability Culture is a set of artifacts, beliefs and expressions that have been created by persons with disabilities in order to express their life experiences. He goes on to recognize that Disability Culture is not the only culture that persons with disabilities belong to, that they are also from different nationalities, racial backgrounds, religious beliefs and so on. Perhaps the one thing that persons with disabilities do have in common is oppression from many nondisabled people because of their disabilities. Dr. Brown also presents his feelings that people who have worked and written about the subject of Disability Culture have most often started their learning and writing process from the “arena of cross-disability culture.” He feels that it is probably more accurate to say “cultures of disabilities”, than “Disability Culture.” (Brown, 2001)

Dr. Brown believes that recognition of the many different cultures that persons with disabilities also participate in is important because there is no other way to understand each other if we do not understand and/or recognize one another. He also feels that an effort to “mainstream” persons with disabilities is a “backwards perspective.” He believes that societies around the world need to recognize that persons with disabilities come attached to their adaptive equipment, and must accept us as we are in order to benefit from our abilities.

Cheryl Marie Wade sees Disability Culture through a slightly more descriptive lens than Dr. Brown. She says that Disability Culture is about “passing the word”, and that by doing so persons with disabilities gain power. Ms. Wade states that culture contains new definitions and ways of looking at things. She writes, “No longer just ‘poor cripple.’ Now also ‘CRIPPLE’ and, yes, just ‘cripple.’ A body happening. But on a real good day, why not C*R*I*P*P*L*E; a body, hap-pen-ing. (Dig it or not.)” (Wade, 1994)

Ms. Wade says that culture is about finding a history and reclaiming ancestors and heroes, and that Disability Culture is about naming and recognizing. Ms. Wade writes that the truths of disability are the poverty, oppression and restrictions placed on persons with disabilities, much more than “wilted muscles or milky eyes.” She states that Disability Culture is made up of people who lived long enough to tell the truth of what happened to the next generation. Persons with disabilities must seek out their history, name the people and events that make up their history, and share that knowledge with each other. Cheryl Wade, speaking about history says, “And Just as Native Americans insist the true name of discovery is genocide, more and more of us insist that the true name of ‘right to die with dignity’ (without opportunities to live with dignity) is murder, the first syllable of genocide.” We must write our own history. (Wade. 1994)

Ms. Wade believes that Disability Culture is simply about “this is disability. From the inside out.” Disability Culture is about passing the word, and that word could be anything from outsider art, to dance, to American Sign Language, to songs, or ASL mime. It could be sewing, or poetry, but it is most certainly about language in general. Says Ms. Wade, “Language gets claimed. Ms. Gay. Crip. Guerrilla theater becomes theater with a soul. Teatro Capesino. The Dance Theater of Harlem. And of course, WRY CRIPS Disabled Women’s Theater.” Yet Disability Culture is also about what it is not. (Wade, 1994)

Many people, says Cheryl Wade, carry an image of disability that springs from the Jerry Lewis Labor Day telethon, which drips with animosity and misrepresentation of persons with disabilities. “Jerry’s Kids” posters and an agonizing Mr. Lewis do everything they can to pry dollars from your wallet, to the great dismay of many persons with disabilities. Presented as socially acceptable, Mr. Lewis’ telethon is offensive on a level very much like racism to Disability Activists, some of whom consider themselves “Jerry’s Orphans.” Disability Culture is about recognizing the offensiveness of Mr. Lewis, and other misrepresentations of Disability Culture.

Cheryl Wade also points out that Disability Culture is about change. Persons with Disabilities work for change in the way they are treated and perceived by others in America. They work for change, and work to see differences in their quality of life such as the Independent Living Movement, the Rehabilitation Act’s 504 regulations for access, or the Americans with Disabilities Act, which Cheryl Wade describes as “the most comprehensive civil rights law ever written.” Barbara McKee also has some views of disability culture that I find interesting. (Wade, September, 1992)

When I read Barbara McKee’s words about Disability Culture, I found myself agreeing with almost all of it. I agree with her belief that people with disabilities are treated and live in a unique way, and that Disability Culture is indiscriminate and based on fate concerning when a person joins. I also agree that culture and identity are not just classifications, and that they are based on history and emotion; that they are what humanity is made of and cannot be separated.

I do not agree with her belief that the struggles for housing and jobs are common threads between different cultures. I believe the fights for jobs and housing are largely a class issue, not a cultural one. Culture is involved in everything that anyone does in some way, but if people were all wealthy there wouldn’t be a cultural struggle for housing and work. The fight for rights concerning a specific group of people is a cultural issue, but lumping the struggle for housing, jobs, and rights together and putting it all under the label of cultural struggle is incorrect, in my opinion.

Dr. Stephen Brown made several more points than Barbara McKee on the topic of Disability Culture. He points out that the word “disability” means different things to different people around the world, and I can agree with him. His definition of disability rings of Social Security thinking, though, and defining a disability as “a major life impairment preventing persons from participating easily in a major activity” such as walking, hearing or thinking smacks of a medical view of disability. Instead, I would define a disability as “a social perception or form of treatment applied to persons viewed as different by another person or group of persons.”

Dr. Brown says that “we (disabled) share a common history of oppression and a common bond of resilience”, and I definitely agree with this statement. Persons with disabilities have been treated badly, experimented on, and even killed for centuries; and on some level, we have always found some degree of comfort within our own company. Dr. Brown says that we are proud of who we are, and that our pride is part of our identity. I cannot agree with this statement – there are too many persons with disabilities over too much time that have suffered from unceasing stigma and stereotyping from many nondisabled people, resulting in suffering from low self esteem, depression, shame and even thoughts of suicide or the act itself to consider that everyone with a disability feels the pride and identity that Dr. Brown describes. I do agree that more and more persons with disabilities are attaining the pride and identity that Dr. Brown describes, particularly as Disability Culture grows, and disability rights along with it.

The work done in writing and research about Disability Culture, says Dr. Brown, began largely in studies of “cross-disability culture”, and I can see how this might be so. There are many, many medical definitions for what a disability is. Dr. Brown says that it is probably more accurate to say “cultures of disabilities” than “Disability Culture”, but this leaves me wondering about the unity of pride and identity that Dr. Brown spoke of so shortly ago. I think that if we are going to chop up Disability Culture into medical classifications, and then create a different culture for each classification, we will have created subcultures that already exist. A unified Disability Culture is a culture on a level that hears the voices of the many, instead of dividing them up for scholarly sake.

The scholarly Dr. Brown goes on to say that we need to recognize the many different cultures that persons with disabilities are also a part of, and I very much agree with this statement. Persons with disabilities come from every culture on the planet; it would be foolish not to appreciate the cultures people are a part of because understanding each other is a part of the path toward respecting each other, and working together. Dr. Brown also says that we must recognize the different cultures persons with disabilities are a part of because “there is no other way to understand each other if we do not.” I disagree with this statement because I feel that Disability Culture provides common ground for persons with disabilities to begin understanding each other. No matter what culture a person may belong to other than Disability Culture, if she is perceived as having a disability she belongs to the larger Disability Culture, and this provides a common bond with others who are perceived as being disabled.

A refreshing view of Disability Culture comes from Cheryl Marie Wade. Ms. Wade says that Disability Culture is about “passing the word”, and I agree. You cannot know about a culture until you “pass the word”, and passing the word is what creates a culture. Ms. Wade also says that Disability Culture is about finding and naming our history as persons with disabilities, and I agree. She says that Disability Culture is “made up of people who lived long enough to tell the truth of what happened to the next generation”, or “pass the word.” Disability Culture is about making our own definitions, and creating our own understanding, as well as making our own history to come. Disability Culture, says Ms. Wade, is also about what it is not, and that Disability Culture is about change. I found Cheryl Wade’s views of what Disability Culture is to be so refreshing that I would like to see them become a part of the Disability Studies program Antioch University really should have.

I think that Disability Culture is perhaps just as old as any culture in the world, the difference is that we have gone all these centuries hidden, until now. As Disability Culture grows, it will be interesting to participate, to see the controversy between subcultures, to watch as America and the world realize that people are people. Disability Culture’s ultimate goal may well be the death of the medical model of disability, and I hope to live long enough to see it.

When I approach my final project, my first act will be one of continued information gathering. The information I am after will concern the organization I choose and work with. I will gather information on the organization’s vision, mission statement, goals, daily functioning, management and so on, but I will also look out for how Disability Culture is a part of the organization. I want to see the extent to which the organization respects persons with disabilities as persons. I will also listen to the organization’s needs and hopes, and look for their work culture and identity.

A lack of understanding of disability issues has brought forth a number of different opinions and arguments. This has had the result of pitting different schools of thought against each other, with each school of thought sticking to its point and despising other views. Each group stands firm on its view, and it argues for what it sees as the right view. When groups speak out about their view, they go to extremes to make their point. What people with disabilities need is an understanding of a way that is both truthful and impartial. People who will only hear their own view of disability issues are both confused and obsessed with their view, and their learned ignorance. (Cleary, 1991)

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