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.


Blog Bonus: What PWDs can Learn from Cinderella

Hello there, readers,

I just got an idea for another IndependenceChick blog and didn’t want to wait until next week. So here we go.

What can people with disabilities, and the TAB population around them, learn from Cinderella?

Of course, we all know the story of Cinderella. A young girl, born a gentleman’s daughter, loses her mother, so her father marries a new wife with two daughters of her own. The stepmother and stepsisters treat the young girl horrifically, even more so after the father dies. She is essentially made a servant in her own home, up to the point that her name becomes synonymous with the cinders that make her dirty. However, Cinderella has something she wants. That’s right–even though her stepfamily believes it’s ungrateful and laughable for her to want anything, Cinderella wants to attend an upcoming ball with them. As we know, she succeeds in her goal, and actually gets more of a reward than she bargained for.

Now, the critics of the Cinderella story like to claim that Cinderella didn’t do anything to reach her goal because her fairy godmother did it all. They also claim she just wanted a man to rescue her. I argue, though, that one, in her position, Cinderella needed outside help. Two, her goal in going to that ball was not, I believe, meeting and marrying Prince Charming. She simply wanted to do what her family–such as they were–was doing. She wanted to be part of the outside world and seen as more than a dirty servant girl.

So, how does this relate to people with disabilities? Well, if you’ve been reading this blog for long, you can probably answer that often, they get treated like Cinderella. As in, they get dirtied with “cinders,” defined only by what’s “wrong” or “not normal” about them. But there’s more.

See, sometimes, a PWD needs a “fairy godmother.” This can be a parent, a teacher, a friend, even a therapist or doctor if he or she is savvy enough to treat the PWD first as a whole person with dreams and desires. Now, in no way am I discounting independence as part of this construct. I am simply saying that, instead of griping about modifications or saying, “Ella shouldn’t get help with that or she’ll never be independent”–wise up, people. People with disabilities often need modifications and outside help so that the world can be open to them–so that they can do what everybody else does. It’s not about “taking the easy way out” or letting them get away with doing less than what’s required. It’s about providing tools so that when the PWD says, “I can do this” or “I want to do this,” he or she can find out that it’s possible.

In addition, the goals of a PWD aren’t always what the temporarily able-bodied population thinks they should be–and that’s okay. Because that’s the other lesson PWDs can and should learn from Cinderella. Anything can be a goal. Anything! Cinderella’s goal was to get out of her house and be part of the outside–and she did it! Remember Beth from Riding the Bus with My Sister, who wanted to go to Disneyworld with her boyfriend Jesse but was told that wasn’t a “real” goal? Well, it was a real goal, and she did it! So ask the PWD in your life what their goals are–not what you would have their goals be. Heck, for Cinderella’s stepmother and stepsisters, a good goal for her might have been “Scrub the floor in under twenty minutes.” It doesn’t matter if a PWD’s goal is getting into Harvard or learning to cut on a straight line. Whatever it is, it counts–so help them get there. No glass slippers required.

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.

I Am Disability: A Response to the Autism Speaks Infomercial

Hello, readers,

Okay, so obviously, my resolution to write once a week went out the window. What can I say? Sometimes writing this blog and thinking about advocacy issues is so mentally and emotionally draining that I need a break. But rather than treat myself like a “bad” special ed student who didn’t meet her goals and must therefore be reprimanded, I’m just gonna get back on the horse.

Some of you may be familiar with an infomercial entitled I am Autism. It’s sponsored by the group Autism Speaks and is part of their campaign against autism, which this group feels is a terrible disease that must be cured. Wrong on both counts, by the way. The infomercial uses a deep, robotic voice to say things like,

“I am autism.”

“I know where you live.”

“I will ruin your marriage.”

“I will make it impossible for your child to go to a birthday party.”

“I will make you cry.”

And more. All horrible, negative, hope-stealing statements that for some reason, Autism Speaks thinks is the best way to raise awareness of the needs of children with autism and their families. Autism Speaks has taken this even further; they actually made a documentary based on these beliefs. Before filming, every family featured was asked to stop all therapies for their children so the kids would “act autistic enough.” In other words, Autism Speaks is not interested in truly knowing individuals with autism. They are not interested in helping, inspiring, or uplifting those people. They are not interested in making their families feel normal and included. This group is instead interested in manipulation, exploitation, and the perpetuation of the idea that autism and other disabilities are blights on society and must be either cured or eliminated.

I have to wonder: how many other disabilities is the world treating the same way? Sure, we don’t have organizations like Blindness Speaks, Deafness Speaks, or Muscular Dystrophy Speaks. At least not yet, and I hope we never do if what I outlined above is what they’d look like. But how many times do we look at families affected by disability and immediately shift into “can’t” mode? We act as if Disability is this monster who sneaks up on families and says:

“I will destroy your hopes for your loved one. I will make it impossible for him or her to get a real education. He or she will spend days in special education instead, performing the same life skills over and over, but I will make sure your child is never ready for anything. I will make it impossible for your child to have a job or home. I will place him or her in an endless waiting game for ‘services’ that never do what they are asked to do. I will bring tears, stress, and anger into your home, and I will NEVER GO AWAY.”

The worst part is, the communities in which families of individuals with disabilities live often perpetuate this view. Doctors and therapists set parents up to grieve what their child will never do, good intentions aside. Teachers warn that students and parents should not get their hopes up about what a student with a disability will accomplish–especially if the person with hopes is the student himself. Pastors, rabbis, and imams sometimes don’t even include PWDs in their houses of worship.

What if, instead, we gave Disability some new lines to say? I would rather hear it say something like:

“I am Disability.

I know I look scary, and it’s true that I will influence, to a degree, what the person with me can do. However, I hold within me many surprises, dreams, hopes, and expectations.

I will challenge you to think in new ways. I will teach you that there are no ‘right’ or ‘wrong’ answers–only options. If I make it hard for your child to write with a pencil, there’s no need to apologize for or fret about that, because there are computers. If I have taken away your child’s physical voice, I can show you how to get it back through assistive communication technology.

I can teach you and your child to stand up for yourselves. Along your journey, you will meet people who believe I am a monster or a disease and that your loved one is infected, defective, or ‘less.’ I never wanted these people to do so, and I am sorry. But I can also teach you to respond to them–gracefully, assertively, and yes, angrily if you must. I will give you and your loved one courage that you never knew you had.

I can give you and your loved one hope. Not because there is a ‘cure’ for me. A lot of versions of me have no cure yet, but that’s okay. I don’t want people to focus on my cure and getting rid of me. I would rather teach persons who have me to say, ‘I have X, but I can still do great things.’ The best part about this is that it’s true. Abby Curran has cerebral palsy, and she spearheads a beauty pageant that helps girls and women who have me look and feel beautiful–because they are. A young man named Tim has Down Syndrome. People who think I’m a diseased monster probably thought he belonged in an institution or a sheltered workshop. He owns and runs his own restaurant, where he serves food and hugs. Because everyone needs warm hugs.

I am Disability. And if you look beyond what you have heard about me, you’ll see that I have much to offer the world.”