Ability Matters — to all of us, some more than others

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It is hard to say which of these things that matters is the most important. But this one may be the most obviously emotionally charged for me because of my children. This is the header under which “developmental disabilities” comes. As the parent of an autistic daughter (high functioning — I always need to mention that) I have been concerned for years about the questions of labels being applied to my daughter, and how it might adversely affect her.

(As an aside, let me say that, to date, that worry has been unnecessary. While a label is necessary to receive services, she attends a wonderful school district that has set a marvellous example by its faculty that is emulated by its students. Yes, she is different. A lot of people are different — so what.  That is the sort of acceptance of diversity that we have seen by faculty and students alike.)

Near the beginning of the chapter the author mentions something called Disability Studies:

As groups sought to change these conditions, one major outcome is an interdisciplinary academic area known as
Disability Studies, which became an organized area of scholarship in the 1980s. Disability Studies emerged from political science and sociology as those disciplines conducted research on reforming public policies. This field has evolved to encompass many areas of study. Disability Studies scholars advocate approaches to disability that incorporate social, political, and cultural perspectives, and that recognize persons with disabilities as a minority group entitled to civil rights.

Allen, Brenda J. (2010-07-01). Difference Matters: Communicating Social Identity (Page 140). Waveland Pr Inc. Kindle Edition.

While this field of study has obviously been of great help to my daughter, I find myself with a very ambivalent reaction to its mention and discussion. Perhaps it is because the talk of minority status indicates to me that there are people who would use this field as a means of political manipulation, and use my daughter, and others like her, as political pawns (much as certain civil right activists chose to use children as literal cannon fodder during the protests in Alabama and elsewhere in the South). So, with that qualm stated, let me continue through the chapter.

For Ability, the author starts with the use of a legal definition:

Legal definitions of disability use three key words to characterize ability status: disability, impairment, and handicap. As stated by the ADA, “an individual with a disability [emphasis added] is defined . . . as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment. The ADA does not specifically name all of the impairments that are covered.”

Allen, Brenda J. (2010-07-01). Difference Matters: Communicating Social Identity (Page 141-142). Waveland Pr Inc. Kindle Edition.

The author talks about the various models of disability. The first, historically, is the medical model. The model personifies disability by placing it in the person, and viewing it as a medical problem. This model is based on an ideology of normality that sees good health as the normal state and sickness a deviation from the norm.

The social model, in contrast, emphasizes the cultural, social and political factors that construct the disability and spawned the disability movements.

As an example of the former, the author discusses the use of sign language, how some teachers didn’t want their deaf students to use sign language, because it was more “savage” than “normal” ways of communicating. But what author doesn’t mention is the other, social model reasons for not using sign language. Because it encouraged isolation of the deaf instead of allowing them accessibility. Mabel Gardiner Hubbard Bell, wife of Alexander Graham Bell, was an example of using lip-reading to help a disabled person construct access to the world, instead of being seen as the other (for more on this wonderful story of accessibility and a good discussion on ability matters, try reading Make a Joyful Sound by Helen Elmira White).

Something the autism spectrum has been advocating, something of interest to me, is what they are calling the difference perspective as opposed to the deficit model.  Some people with autism are suggesting that instead of having a mental deficit, they are merely different. They have coined the term “neurodiversity” for this. My daughter, while not an activist of any kind, would probably hold to this idea. She is perfectly satisfied with herself, and doesn’t need to model herself on others.

There are many more points the author brings up, but only one more I want to discuss at this point.  See the following quote:

However, all persons with disabilities do not accept or enact a stigmatized identity. Some of them “relinquish or redefine unattainable comparative-status standards, such as normality, that no longer have meaning, and they adopt new goals that fit their lives.” Increasingly, persons with disabilities from various backgrounds are learning to think about disability as a social justice issue rather than as a category of individual deficiency. They view themselves as members of a disability community that is socially oppressed. This shift in perspective can have an emancipatory impact on self-image, and can encourage persons with disabilities to reject stigmatized or tragic victimhood status.

Allen, Brenda J. (2010-07-01). Difference Matters: Communicating Social Identity (Page 155). Waveland Pr Inc. Kindle Edition.

My concern here is again the same one I expressed earlier. We are talking about social justice and a disabled community. I am seeing cannon fodder, and talk of making them included that separates them further. There has to be a delicate balance here of the individual and the group in the standard of ability matters.

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