Appreciating People with Profound Disabilities (or finding myself, on my knees, in a steamy bathroom, useful)
February 11, 2019 | Kelly G. Wilson
I have a special fondness I carry for folks with developmental disabilities. Here is the story behind that fondness. This blog written perhaps a decade ago seems worth revisiting today. I have a keynote to give “on method” and will acknowledge these folks who taught me so much.
Back in the winter of 1985, I was ever so slowly finding my way back into the middle of living. I had spent years living out on the very cusp of living and dying. Do you know that place? I was really just waiting to summon either the courage or apathy to die by my own hand (but never quite finding it). Or, my more active strategy, secretly hoping that I would die by some bad turn of events-a beating, a shooting, a car accident, and, living in a way that made those things very likely.
The first job I got was working at a group home for folks with developmental disabilities for $4 an hour. The people who lived there had to have profound disabilities and most had other factors that made them hard to place. Many had survived years in the enormous human warehouses our society built to house (or maybe to store) peoplewith these problems.
Just in case this starts sounding at all noble on my part, you should know that if someone would have offered me a more prestigious and better paying job I would have taken it without hesitation. I did not give up wealth or recognition to take his job. No one was offering me a better job. No one. I was 30 years old and had never had stable employment in my life. I took the $4 an hour job because that was all I was qualified to do.
I worked mornings-early. I would go in and get the guys up and get them ready to go to the sheltered workshop. Because of the level of disability, occasionally the guys would soil themselves during the night. Those days it was my job to help them clean up.
I remember with great clarity, early one morning, that dark-before-the-dawn winter of ’85, being on my knees in that bathroom. All blue tile up the walls, hot water pouring down, and I remember the feel and the smell of that soapy, steamy air, and I am on my knees washing feces off of a guy’s legs. And down there on my knees, it came to me, that if you could not wash the feces off your own legs, and someone would do that for you, that would be a good thing.
I spent so many years dead certain that I was a drain on the universe. Getting near me would wear you out and cause you damage. The closer you got, the more damage you would take. Mostly, people did not realize it until it was too late. But eventually, they always saw what I saw, and left. That was the story I inhabited. I had evidence–a wake of broken relationships and personal failings trailed out behind me as far as the eye could see.
But there on my knees, in that steamy bathroom, I found myself useful. I did not know that I could be useful. And, I cannot express how much it meant to me on that day, in that bathroom, on my knees, finding myself useful. And, now, remembering it all, my eyes fill with tears of gratitude. I have a special debt to intellectually disabled folks. Not an unwelcome debt, but one that I carry gladly. These folks with such profound disabilities let me know that I could be useful. It was a gift of immeasurable magnitude delivered in the last place I would have unexpected to find it.
I will acknowledge these people in my keynote today for this gift, but also because they helped me realize how much we were the same. Able, not able, great mixtures of both. Sometimes apparent, sometimes completely and carefully concealed. Life slowed down enough in the time I spent with them to recognize that we were all part of the same human fabric. And, we were richer for the appreciation of it.
And now, more than 30 years down the road, I have received that gift a thousand times, all around the world. The gift of finding myself useful. It has really been marvelous. Not painless, but marvelous and unexpected. I can’t believe that I almost left before it happened. I am really glad that I stuck around. And, grateful.
Here are a few things that occur to me, upon reflection-
Right where you are is a great place to start.
Let the world surprise you.
Wonder what gifts might appear in the simplest acts and the humblest places.
Never underestimate the power of a small act of kindness-offered or received.
Take time to appreciate the richness of your own life, even (and maybe especially) in its tiniest forms.