Disability and Its Discontents

I’ve borrowed the following abbreviated definitions of disability, that is, disability understood as a sequence of models—that is not a static position at all—from an entry by Deborah Kaplan, Director of the World Institute on Disability. Her full remarks can be found at The Center for an Accessible Society. The nuanced analysis of disability allows us to see that it is a variegated and polysemous construction, and can be understood to encompass: 

 

A medical model of disability which regards disability as a defect or sickness which must be cured through medical intervention;

A rehabilitation model, an offshoot of the medical model, which regards the disability as a deficiency that must be fixed by a rehabilitation professional or other helping professional; and

The disability model, under which "the problem is defined as a dominating attitude by professionals and others, inadequate support services when compared with society generally, as well as attitudinal, architectural, sensory, cognitive, and economic barriers, and the strong tendency for people to generalize about all persons with disabilities overlooking the large variations within the disability community."

 

In general terms these descriptions serve as a starting point for useful conversations about disability which ought to be understood not as a condition of bodies but as an offshoot of cultural thinking. In many cases the latter is marked by some rather old assumptions.

Most of this blog’s readers are familiar with this puzzle, many of them are, like me, living that puzzle. Many of them are alertly, day by day building lives of evident accomplishments with or in spite of disabilities; many are still misunderstood when they’re on street. “How do you know when you dog has made a poopy?” asks a woman. And one wants to say, “Well I have an advanced degree Madame.” Mostly one winces. Moreover, one says something benign: “They teach you about that at the Guide Dog School”.

Reading my friend Andrea Scarpino’s post below I was reminded (or more properly, re-reminded, and isn’t there a better word than this?) that the general public, liberal or conservative, rich or poor, educated or not, doesn’t understand disability “a wit” and that’s a great shame—especially when, as Andrea’s post shows, the incomprehension of disability is tied to very low expectations of what people with disabilities are all about.

I used to think that the problems regarding disability and the public eye had a great deal to do with the medical model and/or the rehabilitation model alluded to above. But more often now I sense a fealty or dark fidelity between the broadcast media and magazine industry, a kind of “know nothing” stance toward disabled people that reintroduces the twin dynamics of “miracle cure” and “heroic determination” as the only ways to talk about profound physical differences. And that’s a shame since most of us can’t be cured and heroism is a category of human imagination that doesn’t fit into daily life very well. And the media doesn’t like to talk about character and steadfastness and patience and hard internal work, the work that goes on inside a man or woman.

I remain convinced that Oprah Winfrey has done more damage to real people with disabilities than almost a hundred years of mediocre doctors. Her support for Jenny McCarthy with her “cure for autism” cheapness (here I’m borrowing Frank Zappa’s sense of the word) is just the latest in Oprah’s silly, uncomprehending tricked out chatter about people with disabilities. I think a show about the character of real people with real autism who by turns exemplify marvels of temperament and imagination would be worth watching.

 

Okay. That’s me. Here I am, tonight and blogging after a long day of creative work. I’m ready for some new stories and a newer media. Even doctors get what I’m talking about.

 

S.K. 

Comments

[Leslie B.]

Lots of models to choose from, SK. How about my favorite: The ecological model -- one, big soup -- hard to tell where the organism leaves off from the environment and the other inhabitants that surround it -- one constantly interacting, ever-changing system. And the organism’s perceived disability is only one aspect of 4,574,283,718 (by my last count) of variables that affect it’s ability to live what that organism perceives as a fulfilled life. In my job, I am not so much concerned about the people who have many other wonderful, little ducks-in-a-row going for them (socially, economically, etc.), in addition to significant disabilities, as I am about the average schlemiel with a disability in the average environment. It seems as if the average schlemiel with a disability does not have the potential for as good a quality of life as the average schlemiel without a disability. The latest BLS employment data at the American Foundation for the Blind website seems to support this perception. ( http://www.afb.org/Section.asp?SectionID=15&SubTopicID=177 ) You may say this is due to the failings of the culture, and there certainly is merit to this perspective. But from an ecological perspective, it is the disability that is the significant variable.

Assistive technology has made great leaps at information access for people with disabilities, but it may be making relatively greater leaps for the average schlemiel. This is what I was thinking on Tuesday when I was looking at the perfectly smooth touch-screen keypad of the gizmo that the San Francisco Museum of Modern Art provided me to enhance my experience in their 75th anniversary exhibit. I entered a 3-digit number on that perfectly smooth keypad as I was standing in front of the wedding self-portrait by Frieda Kahlo with Diego Rivera. Instantly, I got a quite detailed audio description of the portrait and about three different interpretations. Then, voila, about six other self-portraits appeared in sequence to demonstrate Ms Kahlo’s evolving self-perception of herself. I was blown away. They provided a gizmo for my Mom that had a telecoil to feed the audio directly into her hearing aids. She was less blown away, but occasionally appreciated the snatches of information that she got when she periodically figured out how to use the somewhat bothersome gizmo. But I couldn’t help thinking the next day that the “old-fashioned” audio-only gizmo in the Asia Museum across town at least had an accessible raised keypad. It seems as if every step forward for the general population has the potential to close doors on less dominant segments of society. Do we as a society want to restrict these achievements only to those which are universally accessible? For me, it’s a difficult call.

I personally never expect most of “average” people to be particularly well-informed about specific issues of disability. Many may be fairly well-informed about a handful of specific disabilities; chances are good that the “average” person, especially as time passes for that person, has or knows of someone with a disability, and then the knowledge becomes personally useful and relevant. But there are a lot of disabilities out there. I am a rehab worker. When my mother remarks with wonder that her friend can’t eat bananas anymore, I reply with, “Kidney dysfunction?” And she thinks I’m clairvoyant. No, I just am in contact with and talking to a lot of people who have various disabilities. It’s my business; I am paid to be informed, and that is a big incentive for me, and I’ve gotten a lot better at it as time has passed.

The media is interested in providing people with information of which they have interest. So we have many, many more plots about how someone might go about finding a love interest who will guarantee the person wealth and happiness for generations to come than we have about understanding disability issues. People are much more interested about learning how they can AVOID disability issues altogether if at all possible. With regards to disabilities, the question in the greater public’s minds is more akin to how to avoid becoming or meeting the zombie in “Night of the Living Dead” than how to live a fulfilling life if you happen to become a zombie. This is what is on their minds. I can’t wholly blame the media. The media is a reflection of culture. But remember with whom you are conversing: The woman who’s been influenced by Vachel Lindsay’s “Why I Voted the Socialist Ticket”.

If someone asks me about guide dog poopie, I give them credit for searching out knowledge. If I have the time and inclination, I like to provide the person with a graphic description of the process. Since I have a fairly delicate gag reflex tied to even the thought of touch, smell, sound or sight of poopie and most other excrements, I’ve got to be careful that I don’t get carried away with my descriptions for my own sake.

No, inquiring minds probably won’t get this info from the media. It’s almost better if they don’t. My favorite depictions of people with disabilities in the media are plots where disability is incidental, rather than the feature that grounds both plot and character. But I’d love it if, as a blind character is discussing who murdered whom, the person is incidentally scooping dog crap off of the lawn with hand in plastic bag; To add realism, make it an unusually steaming, juicy pile. Now that’s drama. *gag* OK, I’ve ranted enough for one night.

[andrea scarpino]

amen!!!! clap clap clap clap!

[Leslie B.]

Here is a book that has a chapter on the ecological model of disability. It was written by an associate professor of special ed in Haifa. Good gosh, she spent her sabbatical in PHILADELPHIA?!?! (What was she thinking?!)
Disability from a Humanistic Perspective: Towards a Better Quality of Life
By Shunit Reiter, 2008. Chapter 4, pg. 73 “The Ecological Model”
Here's the gargantuan link:
http://books.google.com/books?id=UQaQ8cMSKcMC&pg=PA73&dq=ecological+model+disability+intitle:Disability+intitle:from+intitle:a+intitle:Humanistic+intitle:Perspective+intitle:Towards+intitle:a+intitle:Better+intitle:Quality+intitle:of+intitle:Life&lr=&as_drrb_is=q&as_minm_is=0&as_miny_is=&as_maxm_is=0&as_maxy_is=&as_brr=0&cd=1

[Claire]

Perhaps Oprah would put up a video of a child who is profoundly disabled by his/her autism...a child who self-abuses, doesn't sleep, smears feces, requires constant supervision. Perhaps then one might not judge Jenny McCarthy's attempts to present an alternative to the "autism is a blessing that must not be cured" story that continues to pander to society's dislike of the hard realities of some aspects of disability, particularly in the area of autism.

[Leslie B.]

Hi Claire,

Your words are unvarnished truth! My concern with Jenny McCarthey's contention that she has "cured" her son's autism is that she may be attributing her well-intentioned "treatments" as the reason for why her son is not, as you described, plagued with the symptoms of much more severe forms of autism. Autism is a spectrum disorder. It may be that her son simply had and continues to have a milder form of the disorder. If this is the case, Mrs. McCarthey may be giving false hope to people who have children with more severe forms of austism. These people very much need hope, but false hope would be, in some ways, more cruel than no hope at all. Jenny McCarthey's son's situation is still very much a story-in-progress. He is a child, and his life is still unfolding. Time will tell how her son's quality-of-life, as well as the lives of those around him, will be impacted by his autism. This will depend on his autism, as well as many, many other factors.

My approach to living life in general is that each person will ultimately benefit from striving to eliminate or minimize the factors that are negatively impacting the quality of life of the person. If the factors cannot be eliminated or even minimized, then the person needs to make the best of what cannot be changed, in one way or another. (That's actually very similar to the Serenity Prayer without the God part, since I never quite know what a specific person means when the person uses the word "God". It means many different things to different people.)

I think that people like SK & Andrea look hard at their personal life journeys, and realize that their specific disabilities, with all of the inherent and frustrating dis-abilities that the word implies, have contributed powerfully to what is "good" and "works" in their lives. In their specific cases, they perhaps wonder if their lives would have been as meaningful and rich if they'd been typical and average folks. That's their perspective (maybe???), and it's not an unusual perspective, but it is certainly not always the case.

Here's a link that describes the different faces of autism:
http://www.webmd.com/brain/autism/autism-spectrum-disorders

I'm very glad you spoke up on SK's website. You said what needs to be said!

[Leslie B.]

Jenny McCarthey's website directs readers to an interesting article on the possible links of environmental toxicities and autism:
http://discovermagazine.com/2007/apr/autism-it2019s-not-just-in-the-head/article_view?b_start:int=3&-C=

That article states that:
"Some children just do not get better, no matter what the intervention. Elizabeth Mumper is CEO of a group called Advocates for Children and former director of pediatric education at the Lynchburg Family Practice Program affiliated with the University of Virginia. Of the 2,000 children in her practice, about 400 have autism spectrum disorders. She describes one boy whom “I have not helped despite my best efforts. He is 17 and still nonverbal and has horrible, erosive esophagitis in spite of the fact that he works very closely with a gastroenterologist. He has to sleep standing up and leaning over his dresser because of the pain, and he has very idiosyncratic reactions to medications. And even though he is nonverbal, he can type anything to me. He’s alpha-smart. The horror is that he’s trapped in a body that doesn’t work.”
“I hate the term ‘full recovery,’” James adds, “because of this false hope. Some children do lose the diagnosis, but that’s rare. I don’t think that should be out there as a goal. We need to accept [the kids] and love them for who they are—because they are lovable. They’re quirky.”

Again, with regards to the last statement, some people with autism are "lovable" and "quirky", but as Claire pointed out, there can also be people whose autism manifests a disheartening degree of behaviors that would not be considered by many people to be "lovable". This can be difficult both for the person and the people with whom they are contact.