Trig Palin's public debut brought out a lot of people who have a lot to say about folks with developmental disabilities. I was writing an email to a friend and thought I might as well share my journey a bit with the rest of you.
I know that when I was younger, I'd hear of people who loved to volunteer for Special Olympics or at summer camps for retarded children. And my entire concept of folks with developmental disabilities could be summed up in two words: They drool. That was it! And I could NOT understand why anybody would want to spend time with a bunch of people who drooled. I mean, more power to them, but it was like knowing that some people really do like lima beans. A "There's no accounting for taste" sort of thing.
Then I went to work for an agency that did residential services in MH/MR. I worked the MH side, and was still bewildered as to why so many people were so enthusiastically working the MR side. I'd hear things like, "My heart's in MR." At the company picnic, I'd notice that the MR staff weren't avoiding their charges. They hung out with them and seemed to be enjoying their company. Some of the clients had distorted faces or bodies. Some were slumped over in wheelchairs. Some of them were behaving strangely. I didn't get close enough to see if they drooled. There truly was no accounting for taste.
I was on the Treatment and Ethics Committee that approved specialized plans. And 90% of those specialized plans were for the MR side. And after a couple of months it seemed wrong to me that I was making decisions about these plans when I had no real picture of what was really going on. So I put myself on the list of people willing to work overtime on the MR side.
I fully expected to be grossed out. There would be drool. And people who needed help with the toilet. If I go into a public restroom and there's so much as a cigarette butt or a piece of toilet paper floating in the bowl I'm totally grossed out. The idea of helping an adult with toileting? But I needed to put up or shut up, to go work a while on the MR side or stop passing judgment on their specialized service plans.
It was with great trepidation that I worked my first shift. And it wasn't so bad. The clients were a bit alien to me, but they weren't unpleasant.
The second shift was fun.
The third shift there was my first crisis. A woman who needed toileting help. The regular staff told me that Mary always made a bit of a mess with her BMs, and said "I'll clean Mary up and get her into clean clothes. You do the bathroom."
I put on my gloves, got the cleaning supplies, and walked into the bathroom. There was a bit of BM smeared on the toilet seat, the toilet paper dispenser, and the sink where Mary had tried to wash her hands. But to my immense surprise I wasn't the least bit disgusted or grossed out. I wasn't "cleaning up shit." I was helping Mary use the bathroom as independently as possible. I cleaned it all up with no trauma, no drama. And that was a major turning point for me. This thing I'd dreaded -- the adult who needed help with toileting -- had been no worse than changing a baby's diaper. Not an appetizing prospect, but not a gross-out either. Just a task you do to help somebody. I liked Mary. Helping her seemed a natural part of that. Even helping in the bathroom.
I found I enjoyed working MR.
I went to work an MR home full time. One guy, J, drooled. And it didn't phase me. He could get drool all over my hands and it didn't bother me any more than getting drooled on by a baby. I genuinely enjoyed J's company. J, who was legally blind, could only parrot a few phrases but not really speak, had spastic legs, and fell into seizures frequently. He was a joy to be around, as were both his roommates. J loved to be sung to and read to, and we were seen so often at the library and at free concerts in town that people thought he was my son. C loved to get outside and kick a ball, and would abandon whatever he was doing to greet me at the door with a huge grin and a meticulously careful hug. R loved to sing and, like me, to soak in the tub in the evening. These three guys were just great guys. I looked forward to going to work every day.
I left that agency for other reasons, and it was years before I'd work MR again. And when I first started at the institution, I looked around and saw a bunch of retarded people. As I got to know them, they stopped being "retarded people" and started being just people.
And then there was M. I fell in love with M. I could write a thousand pages on why I love M. A major life event for me was the moment I realize that there was absolutely nothing wrong with M. He wasn't one for the reject pile, an example of humanity that hadn't turned out quite right. He was a masterpiece of God's handiwork EXACLY AS HE WAS, spastic legs, distorted face, developmental issues and all. M didn't take any guff from anybody. If you made him unhappy, he's make sure you were very, very sorry and unlikely to repeat the offensive behavior. If you made him happy, he'd rub his bristly crew-cut head under your chin -- which sounds weird but was the world's greatest pick-me-up. Staff would come from other homes when they were having a bad day, calling out to M, "Where's my lovin'?" just to get one of those strange little head-rubs.
I got "pulled" to a home some nights where I spent all night changing incontinent briefs and putting the women on and off the toilet. I liked working that home. I especially looked forward to the three times a night I'd be helping G. She was "my little elf". A tiny little woman with huge brown eyes and a smile that went straight to my soul. I could write pages on just the joy of taking her to the bathroom at night, just quiet times when it seemed we were the only two people awake in the world. I miss her so much.
And as I re-read this I notice something. So many of the treasured moments were the simplest things. Waking G up to use the bathroom. Brushing M's teeth. Singing to P. Shooting baskets with T. Just simple things that were imbued with magic somehow. And that's something you have to live, I think, before you can even begin to understand it.
Now, when I see somebody with a developmental disability, I'm not put off. I'm delighted. I was walking through a park in Seoul, when it became clear that the group of people exploring the temple grounds were from some sort of group home. I went joyfully into their midst, greeting them and shaking hands and basking in the smiles. My only beef with the whole situation was that they were in a huge group. I know it's more off-putting to the uninitiated that way. Let each person be with his own family and friends instead of with "other people like him." But still, it's one of my fondest memories of Korea.
I found out that MY heart is in MR. And I found out that WE were the losers when we put these folks away, segregated them, out of sight, out of contact. We've lost a lot more than they have.
UPDATE: Read Pat Goltz' excellent Thoughts on Having a Nephew with Down Syndrome. She notes that the "mental retardation" associated with Down syndrome can largely be attributed to people's perception of kids with DS, perceptions that become a self-fulfilling prophecy. But what particularly excited me was the part about how her nephew knew how to get what he wanted. It was very humbling, at the institution, to be totally outfoxed by somebody with an I.Q. of 20 or so. It taught me that there are many different kinds of smarts, some that we're only just now learning to recognize and not even near knowing how to measure, and that many folks dismissed as "retarded" because they lack bookishness have these other kinds of smarts in spades.
ANOTHER POSTSCRIPT: When I was working at the institution, I read a book by a man who said that we should ditch the entire concept of "mental retardation". At first I thought, "That's crazy!" But as I read more it made sense.
If you do an "intelligence" test on any group of people, the results will form a bell curve. Just about any measure will, in fact, form a bell curve: height, weight, I.Q., hair length, shoe size, you name it.
When we give people I.Q. tests, we say that the people in the middle are "normal". We say that the people at the high end are "gifted". But we take the people at the low end of the bell curve -- where, after all, somebody has to be! -- and make them into something pathological. When people are in the middle of the curve, we recognize that as just normal. When they're at the high end, that's just normal human variation. But when they're at the low end, we suddenly forget the way bell curves work. Suddenly we don't treat it as normal human variation, but treat it as a pathology. And THAT, my friends, is truly retarded!
Whoa! Feel the paradigm shift! Getting the point this man was making was another major life event for me.
YET ANOTHER POSTSCRIPT: While we're on the topic of what's truly retarded, how about some of the people who manage institutions? They force people to live together based on the results of an IQ test that may have been administered decades earlier, then are verily astonished when these people don't get along. Well, what do you expect? How would these managers like it if somebody else said, "Well, you and Fred both scored 112 on the IQ tests given at school when you were six years old. So you and Fred will be roommates until I decide otherwise." You'd see how insane and totally stupid that is if you were doing it to people on the upper two-thirds of the bell curve. But do it to people on the lower third and you're bewildered as to why it doesn't make for harmonious relationships.
YET ANOTHER FURTHER DIFFERENT POSTSCRIPT: I'll add the story of my favorite part of working at the institution for the disabled: Getting G. up to use the bathroom at night.
I'd creep into the room so as not to wake her roommate, crouch down by the bed, and touch her shoulder, saying, "Time to go pee!"
Those huge brown eyes would open and look into mine and she'd just smile. (Would YOU smile at somebody who repeatedly wakes you up in the middle of the night?)
I'd help her up out of bed and walk down the long hallway with her. She barely came up to my armpit, she was so tiny. She had a strange, stork-like gait that made her unsteady on her feet, so she leaned on me. Sometimes she'd look up at me with those eyes of hers and that smile of hers and I'd say, "You're my little elf, you know that?" And the smile would get even more radiant.
There was an enormous mirror over the bathroom sink. When we got to the bathroom we'd stop and look in the mirror together. I'd stand behind her, wrap my arms around her, rest my cheek atop her head, and we'd just smile into each other's eyes in the mirror. The place was quiet. There was nobody but us awake. It was magic.
Sometimes I'd break the rules and carry her back to bed just because I loved how she felt in my arms. She'd look up at me with eyes you could live in, I swear.
I'd tuck her back in, and she'd still be smiling.
And as I'd turn to shut the door, I'd look at her one last time. She'd still be watching me, a faint smile still on her lips, her eyes luminous in the dim light from the hall.
At moments like that, it was as if everything was right with the world.
ONE MORE TIME, WITH FEELING: Some people might comment about how developmentally disabled folks teach us compassion. But that wasn't the case for me. "Compassion" means "to suffer with". And the folks I worked with weren't suffering, except occasionally from the same slings and arrows that afflict us all, such as having buttheads for near relations or having to live with somebody you don't get along with. What they taught me was more about broadening my horizons and opening my eyes. And M., least of all, needed compassion. He didn't suffer; if you crossed him, he made you suffer. Which was the first thing I learned to love about him. That he didn't take any guff from anybody.