With one day left until Halloween, many of us are probably thinking more than usual about the things that scare us. As we’ve discussed on this blog, certain things in Disability Land can be pretty scary, too. No, you might not see any ghouls and goblins, werewolves and vampires–not even a harmless friendly ghost. You might instead see sheltered workshops, institutions, bullying, exclusive language, and very low expectations. If you’ve been reading this blog for any length of time, that should make you squirm. If you’re new here, you’re welcome to read previous posts. You’ll see what I mean once you do.
Yet, there is one frightening thing in Disability Land we haven’t covered. I don’t think we’ve covered it as well as we could, anyway. What is that thing? It’s called isolation. Physical, social, mental, emotional, and even spiritual isolation.
You remember watching horror movies as a kid–or non-horror films with scary parts in them? The ones where the heroes and heroines were going to go into that creepy mansion or stretch of woods, and no matter how much you screamed, “DON’T GO IN THERE,” they did it anyway? True, that was frightening. But in a lot of cases, at least the heroes and heroines of those movies were in a group. That kind of situation becomes even scarier when the person intends to walk into it alone.
Now, I’m an introvert. If I don’t get my alone time, I can become a Dragon Lady. I don’t need to be around tons of people to feel comfortable. Yet, I do need people–because we all do. There’s a reason why jail or prison is considered a punishment. Among other things, it’s isolating. There’s a reason why people who are tortured, have to face the pain alone–because support of other people is a threat to the one doing the torturing. There’s a reason why kidnappers, murderers, thieves, and rapists usually wait until their victims are somewhat alone and isolated before striking.
You get it. Isolation makes people vulnerable. It leads to depression and hopelessness. And it is one of the biggest, scariest problems facing people with disabilities today.
According to an article on disaboom.com, social isolation is one of the biggest barriers facing people with disabilities. The article focuses more on people who’ve sustained spinal cord injuries, but the principle applies across the board. So, why are PWDs so often isolated? Disaboom.com, disabledworld.com, and other sources, provide these reasons, among others:
- Accessibility. Bob Wassom, an author of an article on this subject located at disaboom.com, writes that “limited transportation” is often a culprit behind isolation. He also quotes psychologist Dr. Stephen Sheppard, who says that “emotional stimulation–getting out and meeting people,” is essential to the well-being of PWDs. Sheppard also cites “physical touch” as essential to the well-being of PWDs–but think about it. If you are alone all the time, who is going to be around to touch you? Who will provide the emotional stimulation of conversation and activity? Why should PWDs be denied this simply because they can’t drive, or because the “only” transportation services available to them are paratransit, where their needs and convenience are rarely considered, or options geared mostly toward senior citizens? (More on that in a minute).
- Money. According to Thomas C. Weiss, author of an article on disabled-world.com, financial limitations often keep PWDs from enjoying the world the same way people without disabilities do. Weiss writes that we live in a society “that requires money to do anything at all.” As we’ve discussed, PWDs have the highest unemployment rate of one group in the U.S. (70-75%!) As Weiss also writes, many of these same people might be on government-run programs like SSI, which are meant to “help” them, but they are not remotely “financially comfortable.” Some people with disabilities “struggle to get through each month,” and have to choose between medications they need and food. No, I am not kidding!
So think this over. To go anywhere, it costs money for transportation (and many people with disabilities who do have part-time drivers are expected to kick in for gas). Going to a movie? Well, as Weiss breaks it down, that means paying for your ticket, refreshments, and possibly extra for an “accessible” seat. As Weiss writes: “Where is the money supposed to come from if you live on an SSI budget?”
3. Chronic pain. Thomas C. Weiss also talks about this obstacle in his article. Many people with disabilities experience chronic pain, and according to Weiss, must make the choice between going out without medications, or taking meds that have serious side-effects, one of which is sometimes sedation. So, go out and be miserable, unable to enjoy what you came out to do–or stay home and be doped up? What kind of choice is that?
4. Social stigma. I’ve talked about this enough. You should know what it means (if not, there’re plenty of posts at your disposal). People without disabilities often seem to think, for some reason, that providing access for us is such an inconvenience–but then they punish, shame, and stigmatize us for not working, not getting out, not putting ourselves out there!
5. The lack of people available to do activities. This one comes from personal experience. People with disabilities can and should have friends, a support network (NOT “aides” and “helpers” paid by outside agencies to act like friends). But while your friend with a disability is stuck at home, where are you? You’re working, raising kids, having fun–just like they want to. Just like they should.
6. The presence of negative options that tear down PWDs’ hope and self-esteem. For example, did you know that, often because of disabilities, the fastest-growing group of nursing home residents–that’s nursing homes, as in communities for senior citizens–are people ages 31-64? Did you know there are twenty-one-year-olds living in nursing homes with no means to get out? THAT should scare you!
I can’t solve this problem, because I don’t know every situation of every person with a disability and what they need. I’ve been trying for years to get myself out of semi-permanent isolation, and mostly, I run into nothing but obstacles. Writing helps, as would any hobby or interest another PWD might have. But in order to help PWDs get out of isolation, feel less lonely, and feel valued, the rest of the population needs to do its part. We say people with disabilities are just like everybody else. That they deserve the same opportunities the rest of us get. We say we’re for inclusion. We say we value people with disabilities.
We say a lot of things. But what we’re doing gives me a different picture, and it’s much scarier than any horror movie.
Think about it.