Recently, I found a manuscript on “Disability As Human Variation,” by Richard K. Scotch and Kay Schriner. It raises some interesting, and to some people, possibly disturbing ideas.
What if the “rights,” based model of disability will not serve us well as we move into the 21st century? Scotch and Schriner agree that a civil rights based model of disability has brought people with disabilities into the mainstream. It has given us IDEA and the ADA. Equating the prejudice and discrimination people with disabilities experience to that of people of color or other minority groups has been useful in moving forward the cause of disability rights, but it does not go far enough.
Scotch and Schriner say that there will always be those who live on the margins even within the community of people with disabilities. There are always human variations that concepts such as Universal Design do not address. There will always be people for whom accommodations made generally as a result of civil rights laws like the ADA, will not suffice.
Several years ago, in an interview for this column, I spoke with Paul Longmore, disability historian. He said at that time the individuality of disability may be its greatest lesson to contribute to society. By that he meant that within the community there are variations even within the specific segments of the community such as; blindness, deafness, spinal cord injured, etc.
As a blind person what works for me may not work for the next blind person and so on, hence, the concept of human variation.
One would think that as our society becomes more technologically advanced and the global economy develops, that people with disabilities may be left farther and farther behind. IN fact it may work the opposite. We are seeing a move in marketing toward customer specific advertising. If you visit a web site it may ask you what products you wish to receive information on and then send you information on only those products. You can customize the kind and amount of news you wish to receive in your email box.
This kind of specific customization certainly has ramifications for personal privacy, but it may have an unexpected effect on the participation of people with disabilities in society.
Those in power in the market place are beginning to understand the value of “narrow casting,” or nitch markets. A “hands-free,” cell phone has more application than for someone who is unable to use their hands to hold a phone. For better or worse, non-disabled drivers find this a useful device as well.
The concept of a “human variation model,” in essence reverses the hypothesis of the “moral model.” The “moral model,” says that if you have a disability something is intrinsically wrong with you. The very existence of a person with a disability in the moral model sets the cosmos off balance.
In the model of “human variation,” disability is only a part of the continuum of human experience. If one tries to eliminate disability the balance of the human continuum is set off balance.
Throughout history, as we have sought to eliminate disease, invariably another disease or more than one disease has taken the place of that which we tried to eliminate. This does not mean that we should stop trying to do research for cures to diseases like AIDS or Cancer. It does mean that we need to take a closer look at our motivations for such research and at the ramifications of our actions resulting from such cures. It also means we should be looking at the way we create systems and institutions and ask ourselves if these creations provide increased access to more people, or do they erect new barriers to societal participation?
In a model of human variation, the word disability will probably no longer apply. Currently, this word is useful in its acknowledgement of the difference between the in congruency of the person’s difference, (i.e. paraplegia,) and the dominant part of the human continuum, which is non-disabled. The word disability forces non-disabled people to stare that difference in the face. In the model of human variation, disability simply “is.” It’s a valued part of the human continuum.
It is important to note here that at any time we move between the models of disability within society, which we have talked about in this collumn and in previous columns. While the disability rights movement clearly has moved into a “interactional,” or minority model perspective of disability, the systems, which people with disabilities must navigate on a daily basis, are still transitioning from a medical model to a minority model mode of providing services.
As the baby boom generation ages and more people acquire age-related disabilities, this variation will become a larger part of the human continuum. Again, non-disabled people will be forced to take a closer look at the disability experience as their family members move into that portion of the continuum.
Lolly Lijewski is the Manager of Advocacy Services at The Metropolitan Center For Independent Living-(651) 603-2022.