Hello again readers,
Since you waited in vain all November for a post, I’m going to give you another one, six days early. The credit for the idea goes to Kathie Snow and her article “#1 Need,” as well as a new article from Disability Scoop.
The Disability Scoop article made me so mad my chest did that clenching, heartburn thing. It was about how adults with disabilities need intimacy in their lives, but seldom find it. This can happen for a number of reasons, but the author cited a particular one: supervision. As in, a 21-year-old adult with Down Syndrome has to sneak off to a “secret place” to have a date, because the group home staff does not approve. In order for any resident to go out on a date, a particular group home in Minnesota requires that they sign out and be chaperoned.
In light of this, and in light of the sheltered workshops in Fairbault, MN I posted about last month, I have to ask Minnesota something.
What are you doing? What the Actual. Freaking. FRENCH are you doing?
I guess the people who “serve” PWDs in places like Fairbault, think they’re doing the right thing because in their minds, PWDs need to be supervised. Well, that got me thinking. What is the difference between what we think persons with disabilities need, and what they really need? I’m going to list a few examples now.
Perceived Need: Safety
When most kids ask their parents what Mom and Dad want them to be when they grow up, Mom and Dad will say, “I just want you to be happy.” I didn’t hear that. I have great parents, but they didn’t tell me that. They said, “I/we want you to be safe.”
Now, I get that. I really do. Living with a disability can be dangerous. It’s physically dangerous because so many places lack accessibility. It’s emotionally dangerous because frustration, sadness, and anger can take over your life, which can lead to self-injury, suicide attempts, and other destructive behavior. But when my parents told me that, what I heard was, “My happiness is not relevant, as long as I am in one piece and cared for.” Did they mean it like that? No, but that’s not the point.
Real Need: A Mixture of Boundaries and Independence
Every person, disability or not, needs boundaries. We need to know what we should and should not do to get along in the world and keep ourselves safe. As children, we need adults to enforce that safety. Some PWDs may need help to stay safe even as adults, and that’s okay. However, safety means nothing if the PWD basically lives in a bubble. For example, yes, a teenager who uses braces or a wheelchair needs modifications to be safe in PE class, but sending him out in the hall to hit a ball off a cone while the other kids play baseball won’t do him a bit of good. Allowing him to use gym equipment by himself, or engage in modified sports, will.
Perceived Need: Supervision
This is where I usually hear the argument that, “Some people with disabilities won’t do what you ask unless supervised.” Again, okay, I get it. Sometimes supervision is needed for everyone’s safety and sanity. Yet, this argument has holes. It places a terrible burden on the PWD to be perpetually compliant, and paints them as ill-behaved children. It also allows TAB people, like parents or group home supervisors, to hone in where they shouldn’t. (And then they act shocked when the PWD “rebels.”)
Real Need: Space
Whether you’re an extrovert or, like yours truly, an introvert, we all need space of our own. That can mean a physical space, like one’s own room, or emotional and personal space. In other words, TAB population, stop chaperoning PWDs’ dates. Stop pushing yourself into their physical space in the name of therapy. Stop yanking and jerking on their arms and legs, expecting them to do every activity the group is doing because “this is a group home,” and pressuring them to talk about things they don’t want to.
Perceived Need: Care
We spend a lot, and I mean a lot, of time, effort, and money trying to care for PWDs. This can take the form of therapies, doctor appointments, surgeries, group homes, sheltered workshops, and more. We often see these things as benevolent, and sometimes they are. However, the PWD who is being cared for is not necessarily happy. He or she may feel loved, but lonely. Safe, but unwanted. Content, but confused.
Real Need: Companionship and Intimacy
God said, “It is not good for man (or woman) to be alone,” and he was right. Just imagine how you would feel if you spent most of your days alone, or if most of your human interaction came from being cared for or shuttled to appointments. You’d feel depressed, frustrated, and unwanted. Yet, this is how a lot of PWDs live, even the high-functioning ones. In fact, high-functioning PWDs often face this dragon more than their severely affected counterparts because TAB people assume the disabilities are not really “there,” and act disappointed to discover otherwise. Once they make that discovery, the stop inviting PWDs into their lives because, “I don’t know what to do or not do” or “I don’t want to do or talk about what she does/likes to do or talk about.”
Give me a break, folks. Give me a great big Texas-sized BREAK. We all need friends–real friends, not caregivers. Most of us want significant others and we should have the opportunity to meet them. Of course, you may not be able to go out and get your loved one with a disability a date–and we don’t want you to. What we’re asking you to do is, give us a chance. Get to know us. Stop saying “I don’t get it” and spend time with us until you get it!
This Christmas, your loved one with a disability may need some new things. Beyond socks, underwear, books, toys, and sweets, think about what those are and what you can do to fill them.