Disability – To disqualify legally; to make unable to perform by or as if by illness, injury, or malfunction.
Culture – The act of developing by education and training; refinement of intellectual and artistic taste; a particular form or stage of civilization; a society characterized by such a culture.
Community – A body of people living in the same place under the same laws; society at large; joint ownership; similarity, likeness.
When I was asked to write a column on disability culture I knew it wouldn’t be easy. You can see from the definitions of disability, culture and community, taken from the New Merriam-Webster Dictionary, 1989, the vast differences of the terms. Depending on whom you talk to in the disability community, you will receive a different opinion on what disability culture really means.
Before I attended the University of Minnesota in 1991, I had not thought or heard of disability as a culture. After spending time with some of my classmates on campus at a student union group called the DSCC (Disabled Student Cultural Center) I began to learn about this so-called “disability culture.” Disability Culture for the students on campus meant having a place to go and be with others who had similar experiences and sharing their first-hand knowledge of how to cope with day to day challenges of living with a disability. We had social events and personal growth seminars. This was an excellent introduction to a culture I never knew existed. People who were a part of this group were majoring in everything from the arts to the sciences. I majored in Business Education and received a Masters in Human Resource Development and Education.
Since graduating from the University I have heard many different viewpoints on this topic. For example, Steve and Chris, both of whom are blind, have two totally differing opinions on this subject. Steve’s belief is there is no blind disability culture whereas Chris believes very strongly that there is one.
Steve does not believe in disability “culture” because of segregation. He feels that if people live a mainstream life, why label them as having a disability? His opinion is based on past work experiences where he and a fellow co-worker were segregated by being seated apart from the other, non-disabled workers for a long time. Now, he has moved to another location where he’s with other people who are non-disabled, but feelings of discrimination still affect his viewpoints.
Chris believes that disability culture means that individuals are able and allowed to share various experiences with one another and compare how it affects their lives on a day to day basis. Establishing a culture allows the building of community and a feeling of camaraderie with others whom might benefit from one another’s support.
These same differences in opinion occur in other disability communities, such as the hearing impaired. There is a lively discussion over the nature of deafness. Whether, for example, having an operation to make a deaf or hearing-impaired person “hear normally” is good, or whether that is an expression of non-acceptance of self, a “breaking of the ranks” from others with that disability, etc. Similar discussion takes place within any body of people with disabilities similar to one another (e.g., blindness, mobility limitations, etc.)
An issue that was raised at Gallaudet University, a school for the hearing impaired, was whether they should have a hearing-impaired President, who, after all, is the “most public face” of the institution. I think the underlying issue is whether such a “symbol of deafness” had to be deaf in order to be “true” to that particular “disability culture” or whether he could even be effective if not deaf, in that particular role. Similarly, if the President of the institution were not deaf, would that somehow reflect an institutional betrayal of Gallaudet’s mission; would it be hypocritical even if she were, otherwise, an excellent President.
Even if there is a “disability culture,” isn’t the real issue just how important such an issue is? Each of us has many identities. (I, for example, am a son, brother, grant-writer, Scrabble-lover, daily walker, camper, neurotic, etc.). The issue is, to what degree are these identities prioritized? How often, in a given week, do I emphasize one identity rather than another?
For a person with disabilities, similar issues take place: one person may downplay her membership in the “disability culture” primarily because such disabilities may be relatively mild, easy to overcome or overlook, etc. For a severely disabled person, membership in the “disability culture” may be primary, affecting most if not all elements of his life.
As you can tell there is no one widely accepted viewpoint on this subject. Therefore, I have a question for you, the reader, to ponder. How can a culture exist when there isn’t a single group of individuals who believe in the same ideology? This seems a strange way to label a segment of society. This will continue to be debated for a long time to come. It is interesting to note that some of these individuals who vocally don’t want to be labeled as “disabled” are actually asking to be considered a different culture from the mainstream society.
To put the word “disability” in front of “culture” might start up a whole new form of segregation. Yet, by connecting these two seemingly unrelated words, we could conceivably open up a whole new dialogue. This could bridge the gap between several cultures whether they’re perceived to exist or not. This is sometimes a very educational way to learn about other peoples’ opinions and open the doors of communication between one another.
Disability Culture is discussed most often in the academic field and/or the arts. One reason could be that college campuses today have more people with disabilities than in the past. With more people comes more discussion within the group. Also, more non-impaired people, many of whom have never encountered people with disabilities, have the opportunity to interact and learn.
In the arts you can see the performance aspect of Disability Culture. Many times you will see a disabled person expressing themselves through poetry, music, or in a one act performance of some experience they have had to live through.
To quote Dr. Leigh Clemons, “Disability refers to a mindset that sees differing physical and mental abilities as problems to be fixed—or raised to a certain ‘norm’—or as a reason for dwelling on these differing abilities and how they separate certain persons from the ‘norm’.”
Under that model, “disability culture” is the creation and performance of artistic, social, and political events that highlight the various abilities of all persons without “norming” them. This definition serves two purposes: It provides experience that helps people of all abilities understand their worth and value to society and to explore their creative potentials. Also, it serves to expand the creative potential of society by looking at things from a variety of perspectives, not just traditional ones.
I invite you to continue the debate on the idea of Disability Culture. Information is the key to understanding and debating any topic. The more you have, the better off you are.