Thomas C. Nelson
Fairhaven 366
May 31, 1999
 
 

Disability Culture

Disability culture is a culture that many people in the world identify with. The exchange of information created by and particular to people with disabilities flows through history, art, literature and civil rights activities. In this paper I will touch on some History, Art, Literature and Civil Rights actions that people with disabilities identify with. Some of the historical facts are hard to hear, others may make you stop and question the history you were taught in school. Some of the art and writings are very beautiful; I have included a poem that is both thought provoking and enjoyable.

One question that always seems to come up when the topic of Disability culture arises is whether or not disability is just a medical condition and not a culture. There are a number of people with disabilities who follow this thought line, stating that they do not want to be identified with their disability and would rather be seen as "normal." I think that there is some social stratification that limits people with disabilities as well as enforcing stigmas associated with disability. A growing number of people with disabilities have a sense of community. We have an increasing knowledge of where we have been and where we are going.

There have been a couple of views of disability over time. As I mentioned above, one view is that of disability as a medical condition. To me this is equivalent to saying that being a person of color is simply a matter of having the right skin pigmentation. People of color come from many wonderful cultures! Many people with disabilities were born with their disability, some people were not, but there are a great number of forms of disability and all of them combine to form Disability culture. There are many subcultures within Disability culture. People who use wheelchairs or other adaptive equipment, people with brain disorders and people who are deaf or blind are all examples of groups that have their own culture.

The same scientific thought that labels my "disability" as a "medical condition" named many non-white peoples to be mentally inferior Ė are they considered to be "disabled" as well? My intention in this paragraph is to give a quick illustration of the point that hate is easily used against any group of people in the world. In a similar fashion to Queer culture, Disability culture has chosen to take a term that has been used in negative association with the people of our culture and use it with a positive meaning. Our Grandparents lived in a world where Disability culture was not recognized; many people who identify with Disability culture today are not accepting this.

Another view of disability is that of the charity case, always needing help from society. Some people that will be introduced in this paper; Linda Hoard, Kay Jamison, Stephen Hawking, Cheryl Marie Wade and Mary Verdi-Fletcher, can testify to the falsehood of anyoneís impression that people with disabilities are nothing more than charity cases. Disability culture recognizes the fact that people with disabilities have been around for the entirety of human history and have, and will continue to, contribute to their own culture and society at large. As this culture grows I will dare to predict that an even larger number of people who are disabled will become more and more visible to the larger society. I hope for the day when people with disabilities are looked upon by other members of society with respect; not pity.

One of the best discoveries I made during my research for this paper was a web site called the, "Disability in Social History Project." From them I found several history related items that have direct relation to people with disabilities. They maintain a list of people of historic mention that have a disability.I also found two posters that reflect some of the adversity people have had to face in our past. The posters drew an eerie line between Nazi Germany and the United States. The Nazi poster says, "You are bearing this too", and informs the ĎGerman Workerí that a hereditarily ill person costs 50,000 Reich Marks to maintain until he or she has reached the age of 60. On the poster is a picture of a young, white working man with a log across his back. On one end of the log is a figure reminiscent of a scarecrow; on the other end of the log is a figure that looks very much like a werewolf or animal. The poster was propaganda to justify the mass-killings of people with mental and physical disabilities during World War II.

The other poster I found at the Disability in Social History Project was titled, "The Feeble-Minded or the hub to our wheel of vice, crime and pauperism." It was made in 1915 and was displayed on the cover of "The Feeble-Minded", a pamphlet distributed by the Juvenile Protective Association of Cincinnati. At the bottom of the poster are the words, "Cincinnatiís Problem." Around the outside of a circle that surrounds a picture of a man who is intentionally portrayed as being ignorant is a legend of words. Those words read, "Juvenile Court, House of Refuge, Jail, Police Court, Work House, Charity, City Hospital", and, "Infirmary." The American version of hate propaganda is easy for me to see as a parallel to the Nazi version of hate propaganda. While the Naziís are looked upon as fanatical killers, I have to wonder how many disabled people were beaten or killed here in America before the Nazi party even announced itself. The fear of those who are different than you is still with us today.

There were some pictures of stamps and a book cover at the Disability in Social History Project web site that clearly show the charity view of disability that people in this country had in the past. There were pictures of, "Good Willy", the Goodwill cartoon boy in his wheelchair, but still able to do handy projects with a smile. There were stamps that suggested we be glad that we are not blind. On the cover of one book is a picture of a man who has had his legs amputated, yet posed for the cover of his book with two prosthetic legs and two canes in order to stand up. He was so ashamed of his disability that he couldnít bring himself to sit in a wheelchair.

The list of famous people I found at the Disability in Social History Project included some people that I had never associated with a disability, and so assumed that at least many others had not either. One of the three people I will mention is Harriet Tubman. Harriet was a slave born on a plantation in Maryland. When she was thirteen years old she threw herself between a fellow slave and the plantation overseer who was about to whip him. The overseer struck Harriet on the head. For the rest of her life she had a form of epilepsy. When she was 29 Harriet escaped from slavery and dedicated the rest of her life to rescuing other slaves and to civil rights, including womenís sufferage.

The second person on the list that caught my eye was Franklin Roosevelt, who served 3 terms as president of the United States. Due to polio, Franklin could not walk unassisted. Unfortunately, because of the weight of stigma surrounding disabilities at the time, he felt that he had to hide the extent of his disability from the American public. There are some people today who are upset that his memorial doesnít include the wheelchair he spent so much time in. I think that Franklinís memorial doesnít include his wheelchair because those who designed it and paid for it still view disability as something to feel ashamed about. I also think that this memorial is a large sign of the distance people with disabilities have to cross before social recognition and equality will be reached. I hope that one day this memorial will be replaced with one portraying Franklin in his wheelchair.

The third person I noticed on that list of famous people is Wilma Mankiller. Wilma was a homemaker living in the San Francisco suburbs during the 1960ís when she became involved with the 1969 Native American occupation of Alcatraz Island. The protest inspired her to become more involved in Native American issues and she eventually returned to her Cherokee country in northeastern Oklahoma. In 1979, while Wilma was in the hospital recovering from a serious car accident, she was diagnosed with a rare form of muscular dystrophy. She continued working with the Cherokee Nation and in 1985 became principal chief, the first woman ever to hold such a high-ranking position in a major tribal government.

History is important to every culture and Disability culture is no exception. But people with disabilities are progressing into the future and one of the ways they are doing it is through art. It used to be that people with disabilities doing art meant some back room with crayons. Not anymore - I found a web site for some artists who are visually impaired called "Art Through Touch." The main page led to others on the site for class options and a description of what they do. I also found a site for artists who paint using their feet and mouths. They are organized on a worldwide level.

Linda Hoard is an Internet friend of mine who has Bipolar disorder. She is a very skilled artist who enjoys a form of art called, "Photo-realistic painting." She paints real-life objects with so much clarity and detail that it is very close to the real thing. Linda has had an art exhibit at the Seattle Art Museum, and has earned high praise from the art community for her work. Linda has told me time and time again that she owes much of her artistic skill to her mood disorder.

Another site I found in my search for artists with disabilities led me to a very talented ballet dancer named Mary Verdi-Fletcher. Mary is the founder and Co-Artistic Director of the Cleveland San Jose Ballet; she also has a disability called Spina Bifida. Her, "Dancing Wheels" productions left me wondering why people who use wheelchairs havenít been more involved in ballet. The photographs on her web site show a mixture of disabled and non-disabled people in a harmony of motion; I am impressed with their work.

Whenever I look at disability issues on the Internet, the name, "Cheryl Marie Wade" keeps popping up. She is very uninhibited where speaking out about disability rights and her own disability are concerned. I found a poem that she wrote that says quite a bit about how she feels. Her poem is called, "I am not one of the."

I am not one of the physically challenged-
Iím a sock in the eye with gnarled fist
Iím a French kiss with cleft tongue
Iím orthopedic shoes sewn on a last of your fears
I am not one of the differently abled-
Iím an epitaph for a million imperfect babies left untreated
Iím an ikon carved from bones in a mass grave at Tiergarten, Germany
Iím withered legs hidden with a blanket
I am not one of the able disabled-
Iím a black panther with green eyes and scars like a picket fence
Iím pink lace panties teasing a stub of milk white thigh
Iím the evil eye
Iím the first cell divided
Iím mud that talks
Iím Eve Iím Kali
Iím The Mountain That Never Moves
Iíve been forever Iíll be here forever
Iím the Gimp
Iím the Cripple
Iím the Crazy Lady
Iím The Woman With Juice

Painters, Poets, Dancers and all other form of artists with disabilities Ė there to see if you only take the time to look. The artwork created by those who identify with Disability culture is rewarding. Another art form that many enjoy is writing. People with disabilities are finding a place in the world of literature. The change in attitudes and availability of book sources between the beginning of the century and now is staggering. As I looked in the Wilson library for materials to use in writing this paper and preparing my presentation, I found that disability means essentially three things to the campus library: 1.) Americans with Disabilities Act information 2.) The medical view of disability including children with disabilities, and 3.) Outdated and sometimes cruel misinformation. An example of some very outdated information available in our library includes:
bullet "Backward and feeble-minded children; clinical studies in the psychology of defectives, with a syllabus for the clinical examination and testing of children Ė by Edward Burke Huey (1911)"
bullet "Educating the Child Who is Different by Maria Egg"
bullet "The Different Child Grows Up also by Maria Egg"
I did find an example that gave a glimmer of hope for the recognition that people with disabilities come from every race, gender and sexuality of people on the planet. It is called:
bullet "Beneficios de Seguro Social y de SSI para ninos con incapacidades Ė U.S. dept. of Health and Human Services, social security administration."
The search I made for literature by, for and about people with disabilities outside of the Wilson library led me into a completely different mindset. Some examples of books I found outside the library include:
bullet "Imprinting Our Image: An International Anthology by Women with Disabilities by Diane Drieger and Susan Grey."
bullet "The Disability Studies Reader by Lennard Davis."
bullet "Nothing About Us Without Us: The Dialectics of Disability Oppression and Empowerment by James I. Charlton"
I also found books written by people with disabilities that are well known. Stephen Hawking wrote "A Brief History of Time." Stephen is one person I respect because he is someone with a disability who places himself in front of society and makes them question their able-bodied perceptions of disability. As one of the most noted physicists in history, it is hard to deny his contribution to societyís image of disability culture. I found a statement by Stephen describing a part of his experience with his disability:

"Not knowing what was going to happen to me, or how rapidly the disease (ALS) would progress, I was at a loose end. The doctors told me to go back to Cambridge and carry on with the research I had just started in general relativity and cosmology. But I was not making much progress, because I didnít have much mathematical background. And, anyway, I might not live long enough to finish my PhD. I felt somewhat of a tragic character. I took to listening to Wagner, but reports in magazine articles that I drank heavily are an exaggeration. The trouble is, once one article said it, other articles copied it because it made a good story. Anything that has appeared in print so many times must be true."

"But I didnít die. In fact, although there was a cloud hanging over my future, I found to my surprise that I was enjoying life in the present more than before. I began to make progress with my research and I got engaged to a girl called Jane Wilde, who I had met just about the time my condition was diagnosed. That engagement changed my life. It gave me something to live for. But it also meant that I had to get a job if we were to get married. I therefore applied for a research fellowship at Gonville and Caius (pronounced Keys) College, Cambridge. To my great surprise, I got a fellowship, and we got married a few months later."

I think that Stephenís experience with ALS and his success in one of the most mentally demanding scientific disciplines is a powerful example to non-disabled and disabled persons alike. A disability does not mean an end to life, in fact it can be an introduction into a new culture, Disability culture, and a re-affirmation that we can both benefit and receive benefit from people with disabilities. Stephen has benefited from life with a disability, and society as a whole has benefited from his work.

Dr. Kay Redfield Jamison wrote several books on the subject of Manic-Depressive Illness. One of her books is about the genetic history of people with Manic-Depression called, "Touched With Fire." Dr. Jamisonís finest written work is titled simply, "Manic-Depressive Illness", and is one of the most referred to reference works on the subject. Dr. Jamisonís writings continue to affect me personally because I am still learning from the wealth they contain. In her book, "Touched With Fire", she wrote something that helped me to begin questioning non-disabled societyís claim that they are best able to run the world:

"ÖAn almost unbelievable increase in the rate of study of brain structure and function has resulted in a level of biological knowledge about manic-depressive illness Ė this most humanly expressed, psychologically complicated, and moody of all diseases Ė that is without parallel in psychiatry. The Ethical issues arising from such knowledge, and from the possibility that such a devastating illness can confer individual and societal advantage, are staggering: Would one want to get rid of this illness if one could? Sterilization of patients with hereditary psychoses, most directly applicable to those with manic-depressive illness, was once practiced in parts of the United States, and large numbers of individuals with manic-depressive illness were systematically killed in German concentration camps. Even today many provinces in China enforce mandatory sterilization and abortion policies for those with hereditary mental illness. What will be the roles of amniocentesis, other types of prenatal diagnosis, and abortion once the manic-depressive genes are found? What are the implications for society of future gene therapies and the possible early prevention of manic-depressive illness? Does psychiatric treatment have to result in happier but blander and less imaginative artists? What does it mean for biographers and critics that manic-depressive illness and its temperaments are relatively common in the writers and artists they study?"

Writers with disabilities have left their mark on the world of literature and continue to do so in at an increasing rate. It would be a disaster if non-disabled people destroyed a disability that presents so much beauty to the world. One of the ways that some of these writers are changing society is through written material that discusses civil rights issues. Joseph Shapiro wrote one of the most noted disability rights books in recent years. His book, titled "No Pity: People with Disabilities Forging a New Civil Rights Movement", is as in-depth a book as I have found on the disability civil rights movement. Mr. Shapiro is an interesting man; he has no disability that I am aware of, but asked for help in understanding disability from hundreds of people with disabilities in order to accurately portray disability. I think that Mr. Shapiro spoke well when he said:

"Today, civil rights have come to be seen as belonging to specific constituencies. Fairly or not, civil rights are equated with group rights. The disability movement, however, is a reminder that all Americans have a mutual investment in protecting civil rights. And the ADA is a reminder of the original promise of such rights movements: that people must be seen as individuals Ė judged by the content of their character, not stereotyped on the basis of factors such as race, gender, or ethnicity."

One definition of the term, "Culture", that we were given this quarter reads: "CULTURE Ė represents a pattern of symbolic information which a person learns as a part of a member of a given society or subgroup." I see substantial evidence that Disability culture is indeed a culture. Symbolic information exchange through knowledge of history; artful expression, literature and civil rights activities is easily witnessed in Disability culture. Disability culture is also a growing culture as evidenced through the increased growth of symbolic information exchange. I think it is interesting that Disability culture is filled with people from every part of human life. Race, gender, sexuality, class, age, religion Ė people with disabilities represent each of these groups in society. Disability culture is one culture that anyone can join at any time.

Cultural diversity is one of the goals our school has. Diversity has been a subject of some debate on campus lately. Students have stood before school officials in an attempt to promote the very real need for diversity within the student population that includes People of Color, Women, students who identify with Queer culture and students who are from different financial classes in our society. I have turned my back on the actions these students are taking, even though I agree with them fully, because nowhere in their awareness of affirmative action and diversity issues have they included members of my culture Ė Disability culture. I have no idea of where Wright College is, but their affirmative action statement makes me wonder why students here are so quick to deny people with disabilities inclusion in affirmative action and diversity based events:
 
 

Affirmative Action/Equal Opportunity Program: Education
No qualified person with a disability shall, on the basis of disability, be excluded from participation in or denied the benefits of any educational program or activity, or otherwise be subjected to discrimination in such a program or activity.
1) Separate or different programs, benefits, or services may be provided for persons with disabilities only if such action is necessary to provide qualified persons with disabilities programs, benefits, or services that are as effective as those provided to others. If separate or different facilities, benefits, or services are provided for persons with disabilities, a qualified person with a disability may choose to participate in a program, benefit, or service not designated for persons with disabilities.
2) The university will not knowingly aid or perpetuate discrimination against qualified persons with disabilities by providing significant assistance to any agency, organization, or person that discriminates on the basis of disability in providing any aid, benefit, or service to students.
3) No qualified person with a disability shall, on the basis of disability, be denied the opportunity to participate as a member of any planning or advisory board.
4) In determining the site or architecture of a facility, the university shall not make a selection which has the effect of excluding persons with disabilities or substantially impairs the equal opportunity of persons with disabilities to participate in or enjoy the benefits of programs or activities conducted at the facility.
It is amazing to me that students on campus find it easy to say, "People of Color", yet cannot seem to say, "People with Disabilities." From the perspective of Disability culture, the fact that I donít know Western Washington Universityís position on Affirmative Action and people with disabilities, yet had such an easy time finding another collegeís position, is saddening. The civil rights struggle that Disability culture is facing is every bit as difficult as any other group that is fighting for their rights in this country. As our history, art and literature grow and prosper, I feel that recognition of Disability culture will increase.
 
 

(I wrote this paper at the end of Spring quarter 1999 for the American Cultural Studies course I was in. I hope that you will benefit from it.)
 
 

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