"The lived oppression that people with disabilities have experienced and continue to experience is a human rights tragedy of epic proportions. Only in the last few decades has this begun to be recognized and resisted. Today, in fact, we are witnessing a profound sea change among people with disabilities. For the first time, a movement of people with disabilities has emerged in every region of the world which is demanding a recognition of their human rights and their central role in determining those rights." 12
"Nothing About Us Without Us", a landmark book by James I. Charlton, is the defining document in the literature of disability culture. The culture always existed, but the acknowledgement of it did not. To determine what is disability culture, one must understand the definition of the word culture:
cul·ture (kùl¹cher) noun: The totality of socially transmitted behavior patterns, arts, beliefs, institutions, and all other products of human work and thought.
com·mu·ni·ty (ke-my¡¹nî-tê) noun: a. A group of people living in the same locality and under the same government. b. The district or locality in which such a group lives.
As you can see by the above dictionary definition, culture is learned behavior, essentially forced upon an individual by their families, friends, and neighborhoods. Some of the behavior is genetic, passed on throughout family history. But the majority of a persons behavior is shaped by human experience; the culture they grow up in. If a person is born in an impoverished area, they learn a behavior that enables them to live in their neighborhood. They also are taught acceptable behavior within their family. They may choose not to obey or agree to the behavior, but they learn it just the same. There isnt a conscious choice to avoid the teachings of culture.
However, belonging to a community is a choice. One is born into a culture, but is placed in a community until the individual decides to stay in that community, or choose a different one. Community doesnt necessarily relate to physical living space. One can choose to be in the Catholic community, just as one chooses to be part of the black community. There may be some argument comparing a religion to a race, but the point is this; culture is a by-product of birth and circumstance; community is a by-product of choice. There are many minority individuals who refuse to be involved in their community, but are staunch supporters of the elements of their culture.
This holds true for disabled individuals, regardless of when or how they became disabled. Learning to live with a disability exposes one to the culture. Depending on the severity or type of disability, people with disabilities experience the world totally different from anyone else. They have their own language, music, housing criteria, and believe it or not, their own food. A film entitled Crip Culture showcased a gentleman who is a wheelchair user stating the crip culture is real because it has a unique form of foodfast-food drive-thru! His reasoning holds up because any business, be it fast food, drugstore, or a dry cleaner that has a drive-thru will get disabled business. Most wheelchair users and other mobility impaired people hate lugging their wheelchairs or other mobility devices in and out of the car.
Disability culture is unique in the aspect that is crosses all economic, gender and race barriers. No one is considered exempt from becoming disabled. Dara McLaughlin, a prominent New Mexico poet and visual artist, uses the term TAB; temporarily-able bodied. Old age, disease, and accidents insure those of the healthy sector will turn to the disabled culture for advice and direction. Only an untimely death will allow an escape from the inevitable.Disabled communities are more than marks on a map. Physical communities are mostly comprised of the elderly or severely disabled in assisted-living or nursing homes. However, there is a huge disabled community that resides on the internet. These people are very vocal, educated, and politically savvy, but are near or at the economic poverty level, or are unable to work outside the home.With these physical restrictions, they become invisible to mainstream society.
What the politicians dont realize is people with disabilities have more than enough time to read about the issues of the nation, discuss them on thousands of message boards, and write emails to congress and the senate to voice opinions. Disabled people get out and vote, one way or another. Another indication of disability culture is targeted magazines and publications. Hundreds of books have been written about disability culture, and political newsletters and organizations promoting the independence of the disabled have sprung up in huge numbers.
Disability political newsletters The Mouth and The Disability Rag; New Mobility Magazine for wheelchair users
Disability Activist Group "Not Dead Yet" Poster: "The REAL News; People with Disabilities don't want your pity OR your lethal mercy. We want Freedom. We want Life. We're NOT DEAD YET."
Not Dead Yet comprises activist, advocates, and allies who protest the actions of Jack Kevorkian, and who continue to fight against legalizing physician assisted suicide. NYD is also a strong voice against the appointment of Peter Singer, MD, to the Board of Bio-Ethics Department at Princeton University. The group is also working to promote adequate health care, especially around issues of pain relief and long term care. This group, and many others like it have begun another phase of the Disability Movement.
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© 2003 Barbara J. McKee