Twilight Zone?: What Happens When a PWD Wants to Live in an Institution?

Hello, readers,

Not too long ago, I had to face this question. A part of me did wonder if I had stepped into the Twilight Zone. Then, however, I remembered that the Twilight Zone is tricky. It’s not always what we think it is, and so we have to be savvy enough to navigate all its versions wherever we find it. Here’s what I’m talking about.

I often visit a website called Disability Scoop to get ideas for posts. If you’ve never been there, check it out. The site contains news stories related to all kinds of disabilities, from cerebral palsy to autism to intellectual disability and more. The stories are divided into topics such as parenting, caregiving, money, living, and so forth. Like every news outlet, though, some stories make headlines. The one making headlines the last time I was there concerned a woman named Wendy English.

Wendy English is a fifty-one-year-old native of New Jersey. She has severe cerebral palsy. She does not traditionally communicate; instead, she uses assistive devices such as alphabet boards. Wendy also needs help with basic self-care; for example, she needs to wear diapers. She currently lives in a traditional institution called Woodbridge. However, because Wendy’s community is moving toward the increased inclusion of PWDs, her institution will soon close.

Now, if the story ended there, or the institution had been an abusive environment, I wouldn’t be writing this post. I would instead be cheering Wendy’s community for getting her the heck out of there. But here’s the thing. Woodbridge is a good place. Its residents participate in activities and brighten the buildings with artwork to cut down on the sterile stereotype. Wendy wants to stay there because she knows she’s being taken care of. Her community would rather see her move into a six-bed group home, but Wendy says no, she doesn’t want to, because of the high turnover rate of employees. Wendy English has, in fact, been forced to move 17 times in her life because of where other people think she should be “placed,” and the moves have stressed her out so much that twice, she has ended up in a psych ward. (!!!!???)

Fortunately, Wendy has gotten her first choice on where to live next–another traditional institution with decent people at the helm. But the question remains: if PWDs want to live in institutions, shouldn’t we leave them alone? We say we want PWDs to have a choice of where to live–so why can’t institutions be on that list? I know, I know. This sounds totally counterproductive, and knowing what I know about other institutions, part of me can’t believe I have to write it.

But I do. Because if we’re ever going to trust PWDs to make their own decisions–if we’re ever going to learn to treat them as equals–we have to understand that sometimes, they’ll make decisions that we don’t agree with. I mean, people without disabilities do that all the time, and most of the time, nobody alerts the media. Right?

Tune in next week when we continue this discussion. We’ll be talking about what supporters of people like Wendy are saying about her decision to stay within an institutional system, and what we should do with that.


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