Summer/Fall 2001
Volume 6 Number 1


Caring for the Severely Disabled

J.B. Redding brought a profound and unique perspective of suffering to her first year as an M.Div. student and to her role as the Accuser in the Seminary’s presentation of Job: A Mystery Play. Thirteen years ago, after studying government in college and then earning a law degree, Redding started Caring Hands, a nonprofit business consisting of seven houses and thirty-plus employees who care for twenty severely disabled people. During her first year at Princeton, she commuted at least once a week to Aberdeen, Maryland, because she is still CEO of the company—and because she is committed to continuing her relationships (“to be family”) with people who are often without long-term relationships. These people have shaped her. It’s best to let Redding’s own words describe the whos, the hows, and the whys:

 

Two Men with Severe Cerebral Palsy

“There were two men who were roommates in a home for severely disabled people. I would go in and hang out with them and converse. Both of these folks had very, very severe cerebral palsy and so they had a very, very limited ability to gesture. Neither could talk, so I would. Early in my relationship with them I realized that sometimes after I spent time with them I had a sense of full conversation. And I’d think about what a high level of intelligence you have to have to communicate pretty deeply with a couple grunts, some nods, some flickers of the eyelids that aren’t even formalized—yet with this they conveyed subtleties, even jokes.

“Hanging out with the two of them I got this sense of both joy and tragedy. The older guy, who passed away last year, had connected with his family. People in the house knew his capacity because his cousins were in and out, and his momma visited, so the staff would see how the family interacted with him and see that it was effective. So you conveyed intelligence to him, because someone in his world conveyed intelligence to him.

“The other man was categorized as profoundly retarded, with a mental age under two or something. I don’t know if you have any experience with this, but when people are around those they assume to be mentally retarded, they talk to the disabled people like stupid children—with these little, foofy voices. Everybody talked to this man that way. He had a real sweetness and a tolerance, but I didn’t understand how much he was tolerating until one day I said, ‘Well, let me see what you know in your room.’ And I walked around and would go near something and say, ‘Can you point to such and such? Can you point to such and such?’ And he knew everything, down to pretty subtle objects, not just chairs and tables. He knew faucets and the wheelchair lock. I couldn’t find an object he didn’t know. My knowing what he knew enriched our conversation and our relationship greatly, because I started interacting with him on a higher level.

“But staff come in and out of severely disabled people’s lives regularly. And I would watch the tragedy of his having to start all over again as a fool—because of our foolishness, not because of his limitations.

Seeing Things Differently

“People would get excited about going to the supermarket because maybe they only get taken three times a year. Getting to pick out a box of cereal was a super big deal. So on the one hand I’m happy about being able to provide this chance, but there’s something obscene about the situation. Because people with severe disabilities are a significant portion of our world, and we put them off to the side. We even show some offense if we have to interact too much, if they’re too integrated into society.

“I know that I have far more depth and that I’m sensitive to, more able to deal with, things that would be much more challenging had I not cared for people with disabilities. I’ve had the opportunity to learn their full lifestyle and the intimate care that people who are really disabled require. These people need someone else to do all their intimate care.

“Do you know the loss of power you would feel and the amount of grace you must have when someone comes in and doesn’t know how to get your shirt off, so hurts you in the process? And you go through this over and over and over again. Somebody’s jerking on you, but if you’re in professional care—and you’re not at home—then you don’t have the liberty, not if you’re wise, to just get mad. Because they can do worse than jerk your shirt, you know.

“For a lot of severely disabled people, paid caregivers are their only real family. They haven’t had a connection with their relatives for years—or ever, for some. Their whole lives are a string of passing strangers who come through for six months at a time. They don’t know anybody who knew them as a baby. They don’t have the continuity of history, and nobody claims them. The question is not just whether they will ever get married or ever have an intimate relationship. The question is, ‘Will somebody make the commitment to me that even if I don’t stay under care in the same house, I’ll see you again sometime, that I’ll see you again in five years, and again after that?’

A Lady with Red Hair

“There’s a little lady I know, and it looks as if somebody has taken her face and just shoved it in. So she’s almost completely plain except that her features are warped. She’s got gorgeous red hair. She’s one of the most gracious, loving people I’ve ever met, though she’s spent most of her life in pretty harsh institutions.

“But she loves herself and her physical self. When she looks in the mirror you cannot miss that she loves herself. She’s an achievement! Because we’ve got super-fine women with all the attributes of what’s supposed to be ‘it’ in this world, and they’re running around starving themselves, and they wish this was smaller or that was bigger. But this woman with red hair, she loves herself. I’ve known her for twelve years and I think she’s been depressed for only about two weeks in all that time. And whenever you greet her, she has something for you. At the house where she lives, staff always remark, ‘You know, sometimes I feel like I’m not giving as much as I get.’

“So I don’t see the lives of the severely disabled as primarily lives of suffering. Among them are people who are amazing. You just see grace, you see grace.” 


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