Susan Senator

How to balance the will of the majority with the needs of the few? In the case of the Inclusion movement, balance may prove elusive. Like so many movements, the cause of disability rights is saddled with a heavy history that advocates now want to be sure to avoid. In the past we had institutions. The documented abuse that inmates suffered is the stuff of horror films. Now the trend is to close all sheltered workshops. Vermont and Massachusetts are among the first to take measures towards that goal. Of course; these are two of the most progressive states in the country, and sheltered workshops is a social justice cause if there ever was one.

Yet, not all of us agree with the wholesale condemnation of this practice for the simple reason that self-determination may be at stake. Closing institutions and sheltered workshops is an admirable goal but only when we are certain that the very folks using them will benefit. And if we are only hearing from advocates who can express themselves, or non-disabled caregivers and well-intentioned people, we may not actually be acting in the interests of the actual clients. “Nothing about us without us” is the call of the disability advocate today, and nothing could be more sensible. The sticky point comes in when you have the lower-functioning people doing piecework and enjoying it. On May 6, during the airing of her film “Rachel Is,” a documentary about an intellectually disabled young woman transitioning out of school, documentary filmmaker Charlotte Glynn tweeted: “Working in a sheltered workshop is the most important part of Rachel’s life. Work=structure=meaning.” Watching the film, it is clear that Rachel does indeed like doing what she does.

Not only must we consider the preferences of the sheltered workshop employees themselves; we have to ask if closing the workshops will lead to a better life for them. Will the workforce be willing and able to accommodate people who need so many supports? Even with the best of intentions, it is hard to imagine how our society will thoroughly and effectively absorb the highly challenged disabled who currently have occupations in the sheltered workshops. We love to imagine it, but what will the reality be? As it is, even the “higher functioning” disabled are grossly under-employed. The funding needed for job coaches and transportation alone would require states to make use of Medicaid dollars — dollars they must spend first in order to receive the 50% reimbursement from the Federal Government. States like Massachusetts, which do make use of these Medicaid dollars this way still have a gigantic waiting list of people who need employment support.

If the reality of closing sheltered workshops means an empty day coloring or watching television, how is that better for someone than having work to do — even if that work is “no better than” piecework? Who are we to judge what kind of work is best? Okay, certainly underpaid, beneath-minimum-wage work is not good. All workers should be fairly compensated. But — is our distaste based in something more amorphous, and less admirable? Is it that we well-meaning advocates wouldn’t want such work ourselves, so we imagine that it is beneath our loved ones as well?

We have to be careful that we are not making gross assumptions that we know what’s good for another human being. We have to make room for individual preferences and skill levels. Advocates must to the best of their abilities assess whether the sheltered workshop employee is enjoying himself — even if to “us” the work seems beneath them. Sure, if we can tell that the person in question is foundering, stagnating, feeling disenfranchised and discouraged, let’s work on helping him figure out what his vocation is, what his special talents are. But let’s not eliminate something wholesale on principal that it is wrong for everyone. For some people, work is work, and they are glad to have a job, any job. As one autistic woman once told me, “There is no such thing as a bad job. Only bad attitudes.”

PERFECT FOR FATHER’S DAY!

I just found out that my New York Times “Lives” column from 2010 is being published in a small NYT anthology of Lives columns, “Moms and Dads” From the Lives Column.   Available at the following places:
Featured TBook this month, available for free (?) to Times subscribers, iTunes,  Amazon, B&N
And elsewhere.