The Social Consequences of Disability

There is a very interesting opinion piece in the NYTimes this morning by a young man named Michael Jernigan, who was blinded in the Iraq war, about his problems fitting in at home as a person with disabilities and PTSD. The online reaction suggests that most people are missing Jernigan’s (interesting coincidence of names, eh?, in light of Kenneth Jernigan’s fame as an activist for blind people) larger claims about how our society is constructed–both socially and physically–not to allow people with disabilities to feel “at home.” Most people seem to be homing in on the PTSD and “how bad war is” angle. I’ve posted a comment to the website highlighting the larger social point.

Here’s the website for the opinion piece:

“The Minefields at Home,” by Michael Jernigan

http://homefires.blogs.nytimes.com/2009/10/25/the-minefield-at-home/#comment-6841

Medical “Ethics”?

I have to share the following true story.

Not too long ago, I attended a talk on medical ethics. The speaker was presenting a number of test cases for discussion. One of the test cases imagined a 32-year-old woman who had an accident that left her with quadriplegia and requiring ventilator assistance. 10 weeks after her injury, she asks her doctor to disconnect the ventilator. The speaker argued that the doctor should respect the patient’s right to self-determination and disconnect the ventilator. There was no subtlety expressed by the speaker about whether 10 weeks was long enough for the person to know what her life could be like after disability. There was no awareness expressed about objections to these sorts of right-to-die cases that have been expressed in the disability literature. There seemed to be no awareness about worries that have been discussed in medical ethics since at least the 1980’s that people who become dependent after such accidents may express a wish to die as a response to concerns about being a “burden,” and to the larger society’s implications that it wishes to be “rid” of such “burdens.” In other words, whose desires are people in such situations who say they wish to die really carrying out: their own “autonomous” desires, or the larger society’s desires to be “rid” of them? Such questions should give us pause as to whether people in such circumstances are really making autonomous decisions and engaging in self-determination when they ask people to help them die.

In a discussion afterword that was somewhat critical of the speaker’s position,

Samantha, Loss and Ableism

[This post is the thirteenth in our series of Thinking in Action posts, the series being devoted initially at least to discussion of talks at the Cognitive Disability conference in NYC in September; this one takes up another concrete example concerning conference-themes, but not a conference talk. You can go to the Thinking in Action 10 pack, which links to the first 10 posts in the series; the posts run Tuesdays and Fridays, for the most part, and the series will wind up shortly. The posts immediately before this one concerned talks by Ian Hacking and Victoria McGeer on theory of mind and autism and Licia Carlson on moral authority].

I would like to raise some questions around the issue of whether Samantha is an ableist (for background, see the original post The son that Trent can never be …). While it is true that Samantha’s trip to China brought up feelings of loss about her son’s brain injury, she evidently feels guilty about those feelings of loss. What she said to Rob makes clear that she wants to value and appreciate her son the way he is. Indeed, her guilt about her sense of loss seems to stem precisely from the fact that she is committed to valuing her disabled son. In other words, her guilt seems to stem from anti-ableist commitments. For those who don’t want to go back to the original post, and the comments on it that have prompted this post, here’s the crucial bit of what she said about her brain-injured son Trent:

I found it rather hard to be around a baby boy who reminded me so much of Trent’s babyhood. It brought up a lot of feelings about Trent, and about the son that Trent can never be now. Maybe I still need to mourn the Trent that is now gone, but I feel guilty about mourning him, because he’s not dead. I guess I feel like if I mourn him it must mean that I don’t love and appreciate him enough the way he is now. I’m not quite sure what to do with all those feelings, but being around a baby boy sure brought them up. It’s going to be hard in some ways, I think, watching my nephew grow up to be a son I will not have now. What to do? . . . .

One might want to conclude that Samantha is an ableist from the bare fact of her sense of loss. Here, the reasoning would be that, if she weren’t an ableist, then she wouldn’t feel a sense of loss in the first place, so the very fact that she feels a sense of loss by itself shows that she does not properly value disabled people, or that she has prejudices against disabled people, including (now) her own son.

The Myth of the Dispassionate, Disengaged, Objective Philosophical Stance

[This post is the twelfth in our series of Thinking in Action posts, the series being devoted initially at least to discussion of talks at the Cognitive Disability conference in NYC in September. You can go to the Thinking in Action 10 pack, which links to the first 10 posts in the series; and the posts run Tuesdays and Fridays, for the most part. The post immediately before this one concerned talks by Ian Hacking and Victoria McGeer on theory of mind and autism at the conference and can be linked to directly here.]

Licia Carlson’s thought-provoking talk, “A Challenge to Moral Philosophy,” asks us to make the philosopher the object of the study through a discussion of the multiple positions that philosophers occupy in relation to intellectual disability—institutional expert, genetic counselor, family member/advocate, non-human animal, and intellectually disabled themselves. She asks: “What parallels can be drawn between these figures and the philosopher of intellectual disability, and what can these figures reveal to us about our own philosophical projects regarding intellectual disability?”

She suggests that philosophers who occupy the family member/advocate role are often placed in a “double bind.” Because philosophers are supposed to be dispassionate, disengaged or objective, philosophers who are advocates for the intellectually disabled are often either discounted because of their personal relationships to people with intellectual disabilities or they are silenced altogether. She uses this point to argue for what appears to be a version of a kind of care ethics. Here is a clip from her talk:

(Written transcript of clip appears below.)

I would like to make a few points about Carlson’s argument here.

Rethinking Rehabilitation Task Force –Update

I promised a few months ago to update readers about a New York City-based project that I am organizing called “Rethinking Rehabilitation.” My next step will be to invite folks from the New York City area to join the Task Force. Here is the project description:

Rethinking Rehabilitation Task Force

Project Organizer:
Julie E. Maybee
Department of Philosophy
Lehman College
City University of New York

Overview

The Rethinking Rehabilitation Task Force will bring together a group of clients/families, scholars familiar with disability from a variety of disciplines, and rehabilitation practitioners in the New York City area to examine how new models of disability should impact research into, and the practice of, rehabilitation.

The Task Force’s project begins with the assumption that the practice of rehabilitation must be rethought as a result of a paradigm shift in the way disability is defined and understood. The shift from the old “medical model” of disability to the “social model” of disability requires a corresponding shift in the conceptualization of the role that rehabilitation should play in the society and in the lives of disabled people. The “social model” of disability urges us to define disability as a category of identity that is in some sense socially constructed. In the classic version that was developed by the Union of the Physically Impaired Against Segregation (UPIAS), an organization of impaired people founded in the mid-1970’s in Britain, people are not disabled by their bodies or impairments, but by the societies in which they live. “Disability” is an identity and experience that is imposed on people by the society (UPIAS 1976). Impairments do not disable people, society’s prejudice, discrimination and oppression disables people with impairments. This social model was intended to replace the medical model of disability, which defined disability solely in terms of the physical and/or mental impairments of an individual. According to the medical model, someone is disabled by his or her inability to move his or her legs, for instance, or by an inability to see, hear or perform certain cognitive tasks. Against this traditional medical model, the social model defined disability as a category of social oppression similar to other socially defined categories of identity and oppression—such as gender, race, class, and ethnicity. The social model suggests that, to adapt an old phrase from the early days of feminism, the political is personal. Social and political institutions and attitudes cause disability, or disable individuals, and thereby construct the personal experiences of impaired individuals as disabled (an excellent summary and history of the social model can be found in Thomas 2004).

Rethinking Rehabilitation Task Force

I am pleased to announce that I am in the process of organizing the “Rethinking Rehabilitation Task Force,” which will bring together a group of clients/families, scholars familiar with disability from a variety of disciplines, and rehabilitation practitioners in the New York City area to pose questions about how the social model of disability impacts research into, and the practice of, rehabilitation. The project will be supported in part by the School of Professional Studies at the City University of New York.

I am in the process of putting the team together and working on a new draft of the project description. Several members of the “What Sorts” team based here in NYC have already expressed a willingness to participate, and have been wonderfully helpful.

I will post more news of the project as it develops. I am also open to ideas and feedback, as things move along. Stay tuned . . .