Friday, February 1, 2008

Turning the Disability Tide

One of the complaints that I have often seen in regards to how autism is treated by society is that autism is approached from a medical oriented/disease based perspective, and not a social model.

In a recent JAMA (Journal of the American Medical Association, Vol. 299 No. 3, Jan. 23, 2008) journal there is a commentary written by Lisa Iezzoni, M.D. (Institute for Health Policy, Massachusetts General Hospital and Harvard Medical School, Boston) and Vicki Freedman, Ph.D. (Department of Health Systems and Policy, School of Public Health, University of Medicine and Dentistry of New Jersey, Newark). The article is entitled "Turning the Disability Tide: The Importance of Definitions". Unfortunately the entire article is only available online if you (or the institution you work for) has a subscription to JAMA. Requests for reprints can be made to the corresponding author, Dr. Iezzoni, at . JAMA can also be found at most public libraries.

Both Dr.'s Iezzoni and Freedman served on the Institute of Medicine's Committee on Disability in America, so one can presume (both from that affiliation as well as publication in JAMA) that their opinions are valued in the medical community on this subject.

The authors start with a brief overview of disability in America:

Forty million to 50 million individuals in the United States now live with potentially disabling conditions. According to the Institute of Medicine (IOM), this number will likely increase substantially in coming decades. Aging baby boomers will fuel much of this growth as this enormous cohort enters age ranges with the greatest disease and disability risks. Although rates of some serious limitations among elderly individuals have declined, sobering reports warn of higher rates of potentially impairing conditions among children and working-age adults. ...

...As have others, we argue that devising strategies to confront disability must first start by defining disability. Definitions implicitly connote goals, which in turn suggest potential solutions and targets for action. When it comes to preventing or deterring disability, this definition matters.

The authors then describe a brief history of disability definitions, detailing how by the early 1800's physicians had been designated as impartial arbiters of disability, and how increases in technology that allowed them to obtain objective data only solidified that role. Moving on, the article describes how:

Decades later, social changes upended medicalized notions of disability. Confluent forces, including the independent living movement, self-help initiatives, consumerism, deinstitutionalization, and civil rights campaigns for racial and ethnic minorities and women, catalyzed an incipient disability rights movement. By the 1970s, a new paradigm held that "problems lie not within the persons with disabilities but in the environment that fails to accommodate persons with disabilities and in the negative attitude of people without disabilities." Disability is "imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society." This new "social" model of disability diverged importantly from medical model tenets. "The social model . . . views the issue mainly as a socially created problem and basically as a matter of the full integration of individuals into society. Disability is not an attribute of an individual, but rather a complex collection of conditions, many of which are created by the social environment." The issue is therefore an attitudinal or ideological one requiring social change, which at the political level becomes a question of human rights.

Finally, the authors remark about the importance of the International Classification of Functioning, Disability and Health (ICF) which was published by the World Health Organization (WHO) initially in 1980, later revised in the 1990's, and unanimously approved by 190 member countries in 2001. The authors support the fact that the ICF integrates the medical and social models of disability.

Explicitly recognizing the role of external forces (physical, social, and attitudinal) in precipitating or mitigating disability represents one of the major contributions of the ICF. Equally noteworthy, the ICF introduced participation in daily and community life as an explicit component of health. This concept shifted the emphasis from strict prevention to maximizing functioning and well-being—perspectives consonant with public health goals in an aging society. By presenting disability as a continuum, the ICF emphasized the universality of disability and stressed its "relevan[ce] to the lives of all people to different degrees and at different times in their lives."

My opinion (as I've stated before) is that doctors, for the most part, are not the initiators of the oppression that the medical model places on those with disabilities. Rather, they reflect the predominant societal thinking at a particular time and place in history. This commentary, then, is important because it means that societal perceptions and goals are changing.

While I think it important that physicians lead when possible, I think that for the most part this commentary reflects an emerging trend within society, and not just the views of two isolated individuals. Getting definitions right will help society to fashion laws and policy that lead towards a more inclusive society. And that is something I can feel good about while I contemplate what the future holds for my autistic son.


Casdok said...

And the tide does need to turn.

abfh said...

While I think it important that physicians lead when possible

By "lead" do you mean in defining disability? As I've said before, I agree with your point that doctors usually reflect social prejudices rather than creating them; but why should doctors have the primary authority to define the groups of people who are affected by disability prejudice? That's primarily a social issue, rather than a medical issue. As I see it, the people who belong to a community, whether they're autistic, gay, or whatever other difference they may have, should be the ones who define their community.

Club 166 said...


I totally agree. It was a poor choice of wording on my part.

What I meant when I said that, was once those in a particular community had defined themselves, then it would be nice if doctors, who have been given some authority, would assist in "leading" the rest of society from old ways of thinking to more modern ones. This I would find much more preferable to doctors sitting back and either doing nothing or being obstructionist.


Marla said...

I like how you clarified that above. Interesting post. I don't know what doctors could do exactly to make the way they treat people?

abfh said...

Thanks for the clarification. Yes, it would indeed be very helpful if doctors would take the initiative in revising old prejudiced medical texts and similar material, preparing factual and unbiased information sheets to give to parents of newly diagnosed children (and parents of prenatally diagnosed children, when dealing with conditions that have prenatal tests), and otherwise debunking medical myths.

Club 166 said...

Written communications are very important, especially since studies show that patients don't retain half of what we say to them.

But I think it's equally important in how a physician approaches a patient with a diagnosis.

Too often pure NT perspectives are overlayed onto the information that a parent of a child with a disability is given. By that I mean that the doctor may horribly underestimate the quality of life an individual might develop, based on their own internal prejudices, rather than give neutral or cautiously optimistic predictions.

Now that I think of it, this is in direct contradiction to what happens with most cancer diagnoses. Even in situations where there is only a 5-10% chance of remission or significant response, many oncologists remain positive with their patients as long as there is therapy to offer. This contrasts with diagnoses of physical, mental, or psychiatric disorders, where the norm seems to be to predict a life of doom for the child.


Daisy said...

Fascinating. As a disabled person (hearing impaired) and mother of disabled teen (blind, Asperger's) the definition of "disabled" is not abstract to me; it is a concept that can govern my life and my child's future.

mumkeepingsane said...

I think one of the most important roles for physicians is how they present a diagnosis to parents. I remember being told all the terrible stuff about my son and autism. How he was 3% here and 1% there. I asked in a tiny voice "so, will he even be able to attend school?". She looked at me and said "yes, of course, absolutely." It was a contradiction of course but imagine how I would have approached my son's learning if I hadn't asked that question? They really make it seem like the end of the world.