Wednesday, August 01, 2007

Updated: CNN , developmental disability and institutionalization

There's a CNN special report about to air (today or possibly tomorrow, I'm told) on the treatment of developmentally disabled people in the 1950s and '60s that features a family reunited after the loved one with DD was institutionalized for many years. I don't know much more about the coverage yet, except that I've contributed a comment that will probably appear on a discussion forum at the CNN site. I'll put a link to that forum right here when I have it. So, go over there and contribute yourself.

For those coming here from CNN, my indexing is incomplete and doesn't cover all the oldest posts, but you can browse the categories as they are for relevant topics like developmental disability, institutions, children, and choice. Also, many of the links at the sidebar at right are to bloggers who discuss developmental disability more often than me. There's good browsing there, for sure.

Update: I added the link just above, but here's the full skinny:

The story is set to air on tonight's Paula Zahn Show on CNN, at 8 pm ET (7 pm central). Further update: It appears as though a freeway bridge collapse that occurred just over an hour ago in Minneapolis will preempt the story tonight. Look for it tomorrow, August 2.

The online story is here. There's room there to comment, so go check that out and read what others have said.

Here's me (in my huge-photo glory) and the statement I offered them.

I don't think they edited my comment (that link just above), but here again is what I said about the general story of developmentally-disabled folks' institutionalization and the changes since decades ago:

My personal thoughts on what happened 40+ years ago is that it was a tragedy for whole families and has undoubtedly had a lasting impact on how we view developmentally disabled people today. That is, we're still living with the legacy of those folks being segregated, made invisible, and devalued. It has impacted how we view developmental disability and the way we think of difference -- we have all been taught implicitly by this history that people who are intellectually or developmentally different do not belong among us because they're dangerous, completely incompetent and lack any ability to contribute to society. And those beliefs are not true.

One example of the historical legacy: The institutionalization of developmentally disabled people in the 1950s and '60s happened before Roe v. Wade and the legalization of abortion, and while I absolutely support full choice in reproductive issues for women, I do believe that the very high rates of abortion of fetuses with known developmental disabilities has some connection to our social history of what has been considered the potential and worth of certain people. Instead of doctors of decades ago telling families who have just had a baby with a disability that they should institutionalize the child, doctors now are providing the option of never having that child at all. And we don't have much of a modern legacy of integration of developmentally disabled people into our culture to balance those messages with, to make the choices a woman and her family make about these pregnancies complete choices about potential. Because of this history of institutionalization, fear and stigma are a bigger part of that choice than they might otherwise be if acceptance and providing community resources and integration were a bigger part of our social history instead.

And, you know, diagnosing developmental differences is one thing -- tricky by itself -- but determining how differences affect potential is even trickier. The very act of deciding a person has limited potential can limit their opportunities. I know a few people whose abilities were radically underestimated because of developmental diagnoses, and I've read of or conversed online with dozens of other disabled people whose lives have been seriously affected by judgments -- faulty judgments -- about their worth and ability.

Overall, I do think things are somewhat better now because institutionalization and abandonment of disabled children aren't considered the obvious solutions for families. And communities are actively struggling with the education of disabled children in public schools, which is a complicated issue but is, I think, much better than silence, shame and automatic segregation.

The daily difficulties that come from raising (or being) a developmentally disabled person and finding the resources and support needed for that aren't an aspect of the disability experience I'm intimate with, but my perception is that while things have improved there is still a long way to go.

I think the main thing that nondisabled people don't necessarily know or understand is that developmentally disabled people are not this separate category of human beings. People tend to think, "We can do things. They cannot." And there's no line like that dividing all of us. There are shades of ability, varying talents that surface in surprising places. This is true for physical disabilities as well. Most of us, in the course of our lives, discover we have abilities or affinities for some things and lack talent elsewhere, so this idea that a certain class of people lack value or the ability to contribute inevitably underestimates and wastes a lot of human potential.
Another big disability story in the news just now is of the transplant surgeon hastening the death of a developmentally disabled man in order to harvest organs. I mentioned it briefly here. And the CNN show transcript on that story, including some discussion with disability activist Lawrence Carter-Long is available here (scroll toward the bottom for this particular story). These two stories are intimately related, of course.


12 comments:

imfunnytoo said...

Blue I'm just leaving a comment hoping you haven't had anyone close impacted by the freeway bridge collapse in Minneapolis St Paul about an hour and a half ago...

Penny L. Richards said...

But... but.... your skin isn't really blue? For all this time I've pictured you by extrapolating from your little square sigpic.... ;P Huh, ya learn something new everyday.

The guest blog at CNN is so well done--you hit a lot of points that needed to be made. Thank you!

I was lucky. I read Michael Berube's 1994 Harper's essay (which became the book _Life as We Know It) just before my son was born--and again in the first week, while we waited for a diagnosis. I needed that voice at that moment.

Now, maybe there's a bewildered new mom out there reading your essay today, who really needs SOMEBODY to say "of course your kid belongs in the community...your kid has potential...your kid has rights." You'll probably never know, but CNN.com has a LOT of readers.

Kay Olson said...

My skin IS blue. I hide that with makeup. Or wear a bag over my head with a cut-out so just the one eye shows through like in my avatar. Seriously, if you can open that cnn blog page with Explorer instead of Firefox, I'd advise it, because my head is scarily huge in Firefox.

imfunnytoo: I'm following the news too. There's noone I know who is involved, that I'm aware of.

Daisy Deadhead said...

You are beautiful, Kay. Great piece and good work!

(I too, kinda expected blue skin, like those paintings of Krishna or my daughter's old Smurfs beach towel.)

cynthia said...

Congratulations on your guest blog at CNN! What a coup!

Just came by to say that I posted a link to it over at my own blog, http://wheelz.blogspot.com. Thank you for your always excellent posts.

Ruth said...

What a great post- it's why your blog is such a key resource in the disabled blogging community.

However, the lack of blue skin? Very disappointing.. . . .

Wheelchair Dancer said...

I was hoping for blue hair, too.

You rock

WCD

Amanda said...

Not totally related to the CNN piece (which was great), but I thought I'd mention that I've been talking with my mom about some of the issues you've been blogging about and it's been a great experience. I'm hoping she'll start reading here as well, though she isn't much of a fan of the internet.

Anonymous said...

Your head is not enormous in Firefox, at least not on my enormous monitor. I am also dismayed, however, that you are not visibly blue. ;)

More on topic, what a sad, sad story. The more I learn about this kind of stuff going on, to so many people, all while I was blithely living my happy, ordinarily functional and dysfunctional suburban Cold War childhood, completely oblivious to the existence of such pain, the more freaked out I get. I can't even make coherent sentences about this. Fortunately, you have done so beautifully.

Thanks.

David said...

Thanks for sharing your perspective and representing us, Kay. You write so eloquently. Hope you're having a relaxing vacation. I agree with Wheelchair Dancer you rock!

Daisy Deadhead said...

Kay, didn't want to derail any other threads, but just caught this over at the DailyKos comments on the YearlyKos convention:

Dear Activists:

This my first posting on the Daily Kos. As a person with a disability and a disability rights activist I am amazed that the Kos Convention agenda seems to have nothing about the disability rights movement or disability issues in this country. Though disability issues pervade our society the progressive community seems to see people with disabilities through a prism of health care. We are seen as broken with society's goal is to "fix" us. Obviously disabled people are critically concerned with health care issues but from a civil and human rights perspective not as "patients" in a corporately and medically driven system that see us as cotton to be picked for their own profit driven reasons.

Many are unaware that over 2.2 million people with disabilities, old and young, are warehoused in nursing homes and other institutions. This is caused because institutional services are an entitlement in our Medicaid system while in home community services are optional. This is a result of a 40 year old long term care funding system that has fundamentally not changed though society has.

I hope this issue and other disability rights issues can be better incorporated in the future. FYI Chicago has one of the more active disability rights community in the country.

For an Institution and Barrier Free Society,

CrippledRUs


NOT A SINGLE ACTIVIST OR DISABILITY BLOG WAS REPRESENTED AT THE WHOLE CONVENTION?? IN CHICAGO?? This is terrible, and probably deserves its own post. I'd write it, but I don't like DailyKos anyway, and my bias would be pretty bad. (I hope you or someone else reads this and rips them a new one!)

FTR, on a similar note, I can't figure out why the left doesn't get it.

Dan Vander Plaats said...

Kay:

Great post. I'm just letting you know I used some of it on my blog. Have a great day!