Down on the Farm

Always there is someone who will tell you to get in line. In the American idiom "get in line" means to adopt the prevailing point of view. We also like to say: "get in step" and by contrast, when referring to someone who doesn’t reflect the majority’s conventional wisdom–"he’s out of step with America."

I’ve always found this dross of Americana hard to square with the revolutionary independence of mind that is best signified by the phrase: "Don’t Tread on Me."

As I grow older I sense that there’s a terrible problem within the disability advocacy community.

In the field of Disability Studies we call this problem the "defective people industry" and what this means is that there are venerable organizations and points of view both public and private that depend on the status quo. This phenomenon can take many shapes:

Deaf people who disown partially hearing people or those who are not fluent in American Sign Language.

Blind people who believe that the "partially sighted" should call
themselves "blind" and receive rehabilitative services that are
designed solely for fully blind people.

People with disabilities who are so invested in "wave one" of
disability identity that they can’t support initiatives that are taking
place within the more progressive areas of contemporary medicine. There
are in fact doctors and researchers who truly believe that people with
disabilities are not defective patients and who additionally believe
that "incurable" disabled people deserve the utmost respect and the
best possible and most dignified medical care. (There are physicians at
work right now in the U.S. who have gone beyond "the medical model" of
disability which consigns the incurable patient to a socially
subordinate status.)

Non-profits that are secretly terrified that "their" disability will disappear.

Dominant and strictly hieratic languages within cultural theory
about disability that depend on oppositional critiques of science and
industry as a means of reaffirming the permanence of disabled identity.
This is, in effect, "disability as political exception and separatism".

There are of course many more examples of the "get in line" materiality that can occur in the disability community in the U.S..

As a teacher and scholar of disability studies I know that the
"medical model" of disability is still rampant. The PWD (person with
disability) is characterized as a defective healthy person–hence, not
a full human being. "Sorry," says the MMP (Medical Model Physician)
"sorry but there’s nothing we can do for you. Go back to your farm and
don’t call us, we’ll call you.."

The PWD so defined then enters a Kafka-esque and ill-defined world
of obscurity, discrimination, poverty, abjection, and terrible social
services. "Ways, Means, Committee: that’s your "medical model" of
disability and let’s not forget that the defective people industry
(which includes everyone from Jerry Lewis to the folks at Medicare)
counts on this model to generate smackeroos.

I just can’t get in line.

I believe in the right to a fully affirmed and empowered "disability life" and without exception.

I believe that genetic research can descend into eugenics or it can become a means toward building better communities.

I think that people with inherited disabilities deserve top drawer
medical care and that their participation in genetic research is one of
the most exciting advancements in contemporary medicine. (Yes, I teach
Mary Shelley’s Frankenstein and in my classes students are
introduced to the history of British and American eugenics which as you
may know, inspired Adolph Hitler. The twin terrors of statistical
profiling of human physical characteristics and industrial science can
lead to everything from gender based abortions to Stalinist
institutionalization.

Still, there’s a progressive social model of genetic research that seeks to build communities.

There are 3,000 people in the United States who have Leber’s
Congenital Amaurosis–a congenital form of blindness that is still
incurable. But the genetic map for the illness can conceivably be
understood, leading, theoretically, to treatment. And what if doctors
and researchers see these blind citizens as blind and visually impaired
equals rather than as "patients" or "models"?

There are blind people across the U.S. who were told years ago: "Sorry, there’s nothing we can do for you. Go away."

When people disappear they often won’t find out about the latest assistive technology or seek medical care for pain.

Isn’t it conceivable that blind people still need good eye care?
Isn’t it imaginable that those who can’t be cured (and who may not wish
to be cured) can still be part of mapping the structure of a disease?

If you believe in a strictly cultural model of disability you will not like what I’m writing about.

That’s okay. I believe in pluralism and fully recognize that given
the long and painful history of disability there are many in the pwd
universe who savor and defend separatism from anything that looks like
medicine or science. I "get it."

I know blind people who believe that traveling with a guide dog is undignified. They are strictly "cane users." I "get it."

Me? I’m an Episcopalian. I believe in the mystical affirmation of the Eucharist. Maybe for you bread is just bread. I "get it."

Nevertheless I think that there’s an emergent "post-medical model" area of medicine.

And I can’t get in line with certain outworn dogmas.

Will "wave 2" of the disability rights arena get to know "wave 2" of medicine?

Personally, I hope so.

S.K.