Saturday, March 6, 2010

What Is the Disability Community?

The Internet contains millions of references to "the disability community."  To figure out who was included in this community, I went to Wikipedia.  To my surprise, at this point there was no entry on the "disability community."  However, I did find a link to, which describes itself as "Connecting the Disability Community to Information & Opportunities"; but it appeared that they offered no definition either.  It then occurred to me to see if anyone else had answered exactly the question that appears in the title of this post.  That question did not seem to appear in the scholarly articles covered by Google Search at that time, and was very rare on the Web generally.

It began to appear that I might have to figure out a working definition for myself.  One of the few webpages that came up in that last search made a reference to leaders in the community movement, so I did a search for webpages referring to disability community leaders, to see what kinds of organizations or disabilities would be represented there.  That inspired me to search for "disability organizations," which got me started on a quest to figure out what are the major types of disabilities, which I describe in a separate post.

What I gathered, at this point, was that people were involved in disability-related efforts at multiple levels.  Someone who had a certain kind of disability, or was concerned about a loved one with such a disability, might be involved at the individual level, as a caregiver or as a mental or physical health client; or at the local level, with a focus on decisions by the school board and city council; or they might be involved in an organization they found on the Internet, composed of other people, scattered around the world, who have exactly that same disability, or with a more general-purpose disability support or advocacy organization with hundreds or thousands of members and clients.

To use an example from a different context, the American Red Cross may be a great general-purpose disaster-response organization, but that does not mean that they are intimately familiar with every aspect of every disaster.  There will be other organizations and companies that will have more expertise in the various kinds of equipment, personnel, and other resources that may be needed in a particular situation.  The Red Cross may be prominent in disaster-related discussions, but that does not mean that it speaks for, or even understands, all of the individual and expert efforts that combine to form the big picture.

So, to review, I had not found that a search for different kinds of disabilities had helped me very much, beyond the obvious level where I would include blind people and people in wheelchairs within the general disability community; and my idea of looking for leaders of disability-related organizations now seemed like it would tend to get steered toward prominent organizations that would not necessarily be very representative of the disability community as a whole.

At this point, I decided to look into a couple of scholarly articles that discussed the disability community.  One of those articles, by Batavia (2003), emphasized that there was not a united disability community.  There are these social categorizations -- people with disabilities, women, Lutherans -- and on some matters they are pretty much united with others in their category, but on many other matters they are very much in disagreement with one another.  On the issue of what is called Dying With Dignity or Physician-Assisted Suicide, for instance, Fadem et al. (2003) identified strong differences of opinion among people with disabilities:  some were afraid that permissive laws would result in the virtual execution of some people with disabilities, while others were more concerned with the right to make their own decisions about what happens to them.

A page on the website of the Washington Violence Against Women Network made a number of interesting statements, including these:

  • If you ask 100 people – all of whom have a disability – if they are part of the “disability community,” 98 of them would probably answer “no.”
  • Many people do not see themselves – or want to be seen by others – as having a disability.
  • People with disabilities often find themselves alone in a world of people who do not understand what it is like to live with their particular disability. For example, it is difficult for people who are blind to believe they belong to the same community as people with cognitive disabilities.

What emerged from these materials was that "the disability community" is just a term that is used to lump together all sorts of very different people.  Some of the members of this so-called community are wealthy old folks who use a cane; others are kids from the wrong side of the tracks whose experiences of childhood abuse left them with behavioral issues, and who are now rotting in prison. 

I concluded that there is a disability community in the sense that there is a community of women:  for certain major purposes, a majority (but surely never 100%) of the individuals so identified do agree with one another -- on, for example, the need to pass important legislation, such as the Americans with Disabilities Act.  But as the focus moves away from those major but rare instances toward day-to-day living, it becomes increasingly likely that the "community" (perhaps the "movement" would be the more accurate term) will become fragmented into groups that are capable of disagreeing with each other on other major issues, such as abortion, in the case of the women's movement.

This conclusion suggested both a threat and an opportunity for those organizations and individuals who maintain a commitment to a broad-based, inclusive disability community.  The threat was that portions of that community will become opposed to one another to the point of schism.  For instance, Wikipedia informed me that the Deaf Culture is composed of people who believe that deafness is simply a difference, not an impairment.  A brief review of a Wikipedia page on cochlear implants suggested that differences of opinion on such topics can become controversial and heated, even within the "community" of deaf people.  It becomes difficult to have a cohesive disability community when there is not even a cohesive deaf community.

The opportunity raised by these remarks was suggested by the observation, above, that possibly 98% of people with disabilities do not consider themselves to be members of a disability community -- that, indeed, they may not even think they have disabilities.  There seemed to be an enormous pool of individuals who may disagree on important things, and yet share fundamental interests that continue to call for improvements.  To borrow again from the women's movement, abortion is controversial but, by comparison, gynecology is not; and yet gynecological knowledge and practices can continue to advance and be refined.  I suspected that, as I continued to look into topics relevant to the disability community, I might come to see more clearly some dimensions of this opportunity.