Increasing steps toward integration

Thanks to Claire for telling me to look for this article in the NYTimes today.  It's called "After a Lifetime in Institutions, a Rocky Trail to a Group Home."  The article offers the case study of the process of moving individuals with intellectual disabilities out of a formerly huge state institution in Georgia--Central State Hospital, which was formed in 1842, at one point housed 13,000 people with intellectual disabilities.

13,000 people.  Locked up in an institution because parents were told to lock them up, and because there weren't other sources of support for the families out in the world.

The article tells the story of Wally Burns.  When he was a year or so old, he wasn't doing what other kids did, so his mom took him to a doctor, who pronounced that he'd never sit, walk, or talk.  She proved the doctor wrong, helping her son to learn to walk and speak, but she was the only one providing support for him, and eventually she felt that he was unmanageable and dangerous to himself, so she agreed to go along with the pressure from the doctors and institutionalize him.  As the article says, the eight-year-old boy was "screaming and crying and clinging to her legs."

Stuff like this gives me a sick feeling in a way I guess it wouldn't have, back in my pre-Maybelle life.  I would have felt outrage, but it would have been a more detached outrage--recognizing injustice, but not feeling the impact of it the way I do now.  Burns doesn't have Down syndrome, but doctors have historically given parents patently wrong information about Down syndrome, just as they gave Burns's mom wrong information.  I imagined them pulling a crying Maybelle off of me, and thinking about the world that was in place that would have made me think this was the right decision.  A child who knew who his mother was, and who was expressing his desire to stay with her, being torn away.  The mother believing this was the right decision, because the world was telling her again and again, this is the only thing you can do.  You must do it.

I was surprised to learn that there are so many institutions still in existence (Mississippi has 2000 citizens institutionalized right now), but they're all in the process of being dismantled because the Justice Department "in recent years has threatened legal action against states accused of violating the civil rights of thousands of developmentally disabled people by needlessly segregating them."  This is heartening.  The Americans with Disabilities Act is heartening.

And let me tell you what else is heartening:  the Arc of Macon.  This is the group they focused on that's building and staffing small group homes for former residents of institutions.  The article offered three additional brief stories about residents of Central State moving into Arc of Macon homes, and the stories demonstrated ways in which seeing a person as a person can make a remarkable difference in that person's life.  For instance, one person has autism, and due to stress from the move, was banging his head and doing things like smearing feces on the wall.  All reasons to say that a person is "beyond help," right?  Too much trouble.  Instead, Arc of Mason reported,

They noticed that Mr. Lawson liked the showers they gave him after he had dirtied himself, and that he often opened his mouth to drink the water.  They wondered:  was he acting out, in part, to get into the shower?  So they let him shower several times a day and gave him a buzzer to press whenever he was thirsty.
Ah, he wasn't beyond help--he was communicating, and they paid attention and understood.  Apparently things turned around dramatically for Lawson, who is much more peaceful and goes out into the world now--something he almost never did when he lived in an institution.

I had some problems with the article.  It used some really outmoded rhetoric, for one thing.  It described Burns early on as "severely mentally retarded," and I was like, "Listen, people, we don't use those words anymore!"  Then they described one of his friends twice as "wheelchair-bound."  For those of you who are curious, we now say that someone has an intellectual disability and uses a wheelchair.  I would circle these as errors on student papers, so I'm sorry that the NYTimes editors didn't do the same.

I was pleased, though, that we got to see how wrong Burns's doctor was.  By the end of the article, we read of him dancing to disco, waving when people greet him, and going out every day into the world.


Elizabeth said...

Thanks for highlighting this article -- I hadn't seen it, and thank, too for your very cogent commentary!

ckbrylliant said...

Thanks for sharing this information. Truly hopeful.

Kenneth Burns said...

That piece made me cry.

krlr said...

I can't get that image of the little boy clinging to his mom's legs out of my head. The world may still be an effed up place, but I like to think it's a little less effed up than it was. At least here.

Megan The Maybelle sitter said...

In schools we're still using the terms educable mentally retarded and trainable mentally retarded. Those are terms that went out in the 80's but it takes schools a while to catch up. As a special ed teacher (almost) I cringe when I hear people say "MR" but the reality is that most people know what it means to have mental retardation. If Im speaking to someone who is not a part of the special ed world and I say "IDD" or "Intellectual Developmental Disabilities" Im going to have to explain myself using the term "MR." I suspect that the article was just trying to be clear to the general population and that perhaps the author did not know the current (for the next month) terminology. Were not even supposed to use Mild, Moderate, Severe, and Profound anymore. Now our distinctions are supposed to be based on needs, so it is now Intermediate, Limited, Extensive, Pervasive. But, again, anyone that's been out of college for 2 years isnt going to know that because their schools are still back in the 80's.