Twilight Zone Part 2: Too Fast, Too Furious, Too Soon?

Hi, readers,

Last week, I introduced you to Wendy English, a fifty-one-year-old New Jersey native with cerebral palsy. Wendy lives in New Jersey’s institutional system and has for most of her adult life. However, thanks to the changing face of where PWDs live, New Jersey’s institutions are being closed and their residents placed in environments like small group homes.

According to Disability Scoop, the new placements are a way in which people with severe disabilities can experience the “closest approximation [possible] to living in their own homes.” Well, you guys know me–I have absolutely no problem with that. Furthermore, because many state-run institutions have abusive reputations, my knee-jerk reaction to them is often that nobody should have to live there.

However, if you’ll remember from last week, Wendy English wants to stay within a traditional institution. She has many valid reasons for this, including the high turnover rate of employees in group home settings and the fact that she’s lost many friends as they’ve been “placed” in group homes and other institutional alternatives. You’ll recall that in discussing this, I said that Wendy English should be allowed to choose where she wants to live. So yes, if she wants to be in a traditional institution, she should be. Today, though, I wanted to talk about and examine another part of Wendy’s story. You see, despite the many advocates who’d like to see institutions shut down wholesale and residents moved to more home-like atmospheres, just as many advocates are out there who believe PWDs are being moved out of institutions too quickly.

The question, then, becomes whether there’s any merit to that concern and if yes, what we should do about it. Stephanie Akin of Disability Scoop puts it this way: smaller group homes and other alternative settings may or may not have the care and security that “people with the most extreme disabilities” need.

Okay. I’ll buy that. After all, there are some “extreme” disabilities out there. For example, a person with quadriplegia who also has limited cognitive functioning and limitations of communication has an “extreme” disability. Now, that person is still human, and he or she deserves to be part of a community as much as a genius athlete would. Yet, let’s say that person lives in a traditional institution–meaning large, with one hundred beds or more, specifically for persons with severe disabilities, and so forth. Should that person be arbitrarily placed in a six-bed group home for persons with various types of disabilities just because the state adopted some new inclusion policy?

Believe it or not, I say no. Here’s why.

1. Part of being in a community means choosing your own community. Think about it. You live in a community–your city or town–but you don’t associate with every single person in it. There are places in the community that you frequent often, places you don’t, and places you’d rather avoid. So why not let PWDs have that same choice? Institutions can be a community for some, like Wendy English. Allowing people like Wendy to stay in institutional settings is not giving up on advocacy or going back to a model that says, “Persons with disabilities need to be institutionalized in large, segregated facilities, period.” It’s allowing Wendy and others to choose. Which brings me to:

2. All-or-nothing thinking never helped anyone. In this world, there are some all-or-nothing situations. For example, if your doctor tells you, “You have got to stop taking this drug or you’re going to die,” then you’d better listen. However, when you’re dealing with PWDs or anyone else, you are dealing with people. People and their needs generally don’t fit into all-or-nothing boxes. Too often, we act as if PWDs are the exception to this rule, though. “Ben has to complete this IEP goal or he will never progress to the next grade level.” “Hannah has to do this therapy or she will never walk.” “If Rasheed does not live in a small group home, he won’t know what it’s like to live independently and therefore won’t be happy.” What’s wrong with this picture?

3. Too much of anything is not good. Let me say again that I’m glad advocates are moving toward inclusion of PWDs in their communities. I feel like a lot of PWDs have been isolated and missed out on common life experiences for too long. I do think we need to be careful about how fast we integrate, though. To take a PWD who’s lived his or her whole life in an institution out of it and then say, “I expect you to acclimate to this new environment ASAP” is just as detrimental as saying, “You’re disabled so you’ll never live in your own home. Stay here where you can be supervised and told what to do, rewarded for good behavior and punished for bad.”

If there are any gardeners out there, think of it like gardening. (I don’t garden, so any errors in this example are mine). Say you have a rosebush you’ve been tending a certain way for a few months. It’s doing okay, but now you realize it needs more water and less of a certain kind of plant food. Do you proceed to drown it? I hope not. The smart thing to do would be to add and take away what the rosebush does or doesn’t need slowly, over time. That way, the roses will thrive in their new environment.

With persons who have disabilities, it’s the same deal. The first priority should be letting them choose where they want to live. After that, if integration is necessary or wanted, do it slowly. For example, don’t just take a twenty-year-old who’s lived in a group home for two years into a laundry room and say, “Okay, do this laundry perfectly to prove independence.” No way! Instead, say, “Okay, Evelyn, I want to help you prepare to move into your own home. Let’s work on laundry today.” Then do the task naturally (there’re plenty of posts on what that means if you need them). Let Evelyn get used to and confident about laundry. Don’t let her stagnate; don’t fall into the “not ready” trap just because she doesn’t meet your standards. But do give her plenty of time.

People with disabilities can successfully integrate into a non-disabled community. In fact, that’s what I hope everyone with a disability can do. To do that, though, we need to be aware of the choices PWDs make for themselves. We need to support those choices and then give them time to acclimate. And if their chosen “garden spot” is not what we would’ve picked, so what? The important thing is that they’re thriving.

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