Monthly Archives: October 2013

Don’t Go In There Alone: Why are So Many People with Disabilities Living in Such Isolation?

Hello, readers,

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:

  1. 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).
  2. 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.

 

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Desperate for a Disability?: A Probing Look at Body Integrity Identity Disorder

Hello, readers,

The signs of an ever-approaching Halloween are everywhere. Stores are packed with all sorts of candy, kids and adults alike are picking out costumes, and our televisions are airing classics on various levels of scary, from It’s the Great Pumpkin, Charlie Brown to the absolutely spine-chilling The Exorcist or Rosemary’s Baby. I never watched those last two–didn’t have to. The previews were more than enough, thanks very much.

I’ve never enjoyed being scared. But I do love to be intrigued, and sometimes, a dash of fright comes with that. For example, as an armchair psychologist, I sometimes like to delve into what we call “abnormal psychology.” This involves mental illness and rare disorders, among other phenomena. Just yesterday, I caught an hour-long documentary dedicated to four rare psychological/psychiatric disorders, entitled Broken Minds. The featured disorders included a condition in which vision is psychologically affected (Alice in Wonderland Syndrome, where the person feels objects around him or her are perpetually distorted), Cotard Syndrome (a condition in which the person believes he or she is fading from existence or even dead), and a condition in which people literally lose years of their lives from amnesia, without ever experiencing amnesia-inducing trauma.

All these conditions are both intriguing and scary, in a “What would I do if this were me’ sort of way. But the one that intrigued me most is called Body Integrity Identity Disorder (BIID). I had never heard of it to that point. Basically, it is a condition in which a person believes that one of his or her four main limbs does not belong to them. According to biid.org, it is almost as if the limb is “alien.” Therefore, the person doesn’t want it. He or she believes that in order to feel “whole” or “right,” the offending limb must be removed. Broken Minds provides the profile of a physician, Robert D., who believed this about his left leg. Since the age of seven, he had believed he was meant to be a left-leg amputee. After a long comprehensive psychological evaluation, plus years of thought and meditation, Robert concluded he must have his leg amputated to feel whole. Unfortunately, as with most, if not all, cases of BIID, Robert’s limb was healthy. No doctor in the U.S. would, or even legally could, perform an amputation without a valid medical reason. Robert had to travel to the Third World to have the leg removed.

When I looked up BIID on biid.org, I also found that even though most people with this condition desire to be amputees, the disorder can “extend to a desire to be blind, deaf, or [have] any other disability.” Some people will purposely injure themselves so they medically need an amputation. I don’t know what one does if his or her BIID results in a desire to be blind or deaf, or have another disability. But the whole phenomenon of this disorder made me think of a host of new things. The first thought that occurred to me was: Wow. In a society that shuns and marginalizes people with disabilities as “abnormal” or “broken,” there are people who actually want disabilities! Furthermore, they’ll go to great, self-injuring lengths to obtain them.

After the “wow” factor wore off–after all, these people seemed to think in a radically different way than most of us–I had to deal with other thoughts. Thoughts such as, Well, if I personally believe disability is natural, and want other people to see it as such, should I applaud those with BIID? Should I encourage the mental health community to leave these people alone, because they see disability as not only normal, but desirable? This turned into, No, wait a minute. This is different. The people with BIID don’t have disabilities in a “natural” way–they weren’t born with them, nor did they acquire them in ways that might “naturally” lead to disability, such as losing a limb, an appendage, or a sense in combat. These people hurt themselves, on purpose, to get what they want, and isn’t that selfish?

Then I thought of how my stance on the BIID issue could affect my stance on other issues. For example, as a Christian, I love homosexuals and feel compassion for them, as well as anyone else who has conflict with sexual or gender identity. But my faith will not allow me to condone LGBT sexual behavior. So, I wondered, would it make me a hypocrite to “condone” BIID, just because I am a woman with a disability? And, if disability is a civil rights issue, which I also believe, what’s so different about wanting a disability from say, wanting a different skin color? Wanting to convert to a new faith? Even wanting a new gender identity–because there are those who do trample on rights of the LGBT community–the rights to live in dignity, without fear of being abused, and the right to live in society without having the LGBT label define them as people.

As you can tell, this BIID question had my brain in a knot. On the one hand, I so wanted to condone the actions of the people who have it, because as I said, they view disability as desirable, not just normal. But on the other, we don’t always get what we want, and sometimes, having what we want can be harmful for us. There’s the rub, as Hamlet would say (another Halloween nod, since the Danish prince’s troubles began with seeing his father’s ghost).

So, what conclusions did I come to? What conclusions can the community of people with disabilities come to? What can we learn from this? I’m going to share with you, but as one of my favorite Bible teachers, Beth Moore, says, please write my opinions down in pencil, not permanent ink. Meaning, these are opinions, not truths set in stone. Here we go:

  1. BIID is a psychological/psychiatric disorder. Therefore, in its own way, BIID is its own kind of disability. Remember, the person with BIID does not come by disability by “natural” means. The fact that they would choose to put their bodies and health at risk qualifies BIID as a psychological disability, like OCD or bipolar disorder, that can benefit from treatment so the person can cope with the desire to have a disability.
  2. The person with BIID, just like anybody else with a disability of any kind, deserves to be treated with respect. They should be defined as a person, not as a label. They should receive treatment in a “natural” form–that is, they shouldn’t be forced to keep their disorder secret because others would shame them. They shouldn’t be consigned to mental facilities unless they are a violent danger to themselves or others (i.e., trying to run themselves over with vehicles, trying to gouge eyes out, whatever). Even then, I don’t believe these people should be institutionalized permanently, shut away from society. Why? Because we usually don’t do that to people with other disorders and disabilities! The fact that the person with BIID will hurt him or herself to obtain a disability is not strictly natural. The fact that this person has a disability, or even desires one, can be called natural.
  3. The idea that someone would want a disability is not “insane.” At least, it shouldn’t be. The mainstream culture would look at someone with BIID and say, “That’s insane,” because they see how amputees and people with other disabilities often live. Their lives are monitored, they are shut out from activities they want to do, they are seen as “other,” or pitiable–who wants that? Nobody–but that says less about the person with BIID than it does about disability and how we view it. If we could view disability as natural, maybe we would stop viewing the desire for one as slightly, or even wholly, insane. See the rest of the blog for details. (Note: sometimes the desire for a disability can come from other psychological issues, such as a belief that having a disability would result in love and care from family or other loved ones. In that case, the person with BIID needs even more compassion and understanding, and perhaps a different “angle” of treatment).
  4. People with BIID can teach us about disability in a new way. As I said, someone who desires a disability thinks much differently than the mainstream culture does, and that can be a good thing. I believe people with this condition can teach us a lot–the things detailed in #3, for instance. But they can also teach us that behind every disability is a person, reaching out for not only our help, but also our friendship, acceptance, or respect.

People with BIID, other disorders, and other disabilities are all around us, saying, “Please see behind this mask. Don’t be scared of me.” This Halloween, instead of running scared, let’s invite people with all kinds of disabilities to the party.

I Love You, You’re Perfect, Now Change: Why are We Saying This to People with Disabilities?

Hello, readers,

We’ve talked on this blog before about the idea that people without disabilities often erroneously believe that people with them somehow need to change or be “fixed.” Often, that’s because of the medical model of disability, which says that disabilities are, at their cores, problems or burdens–negatives rather than potential positives. That’s where we often get “experts” spouting gloom-and-doom prophecies over people with disabilities, which sometimes turn out to be self-fulfilling. It’s where we get families and loved ones that are so caught up in treatments and therapies, they forget what it’s like to live a real, balanced, enjoyable life. But outside of the medical model, there exists another convention that says PWDs are somehow “wrong” and need to change. I like to refer to it as the social model of disability.

What is the social model? Well, for the purpose of this post, I’m going to focus more on people who have disabilities that are more likely to affect them socially. These include autism, Asperger’s Syndrome, cognitive or intellectual disabilities (because they can result in trouble with “adaptive behavior,”) or ADD/ADHD. These disabilities might be “visible,” or they might not, until you’ve been around the person for awhile. But I’ve noticed a disturbing pattern in the way that people without disabilities react to them. For example, let’s say that Rosemary has Asperger’s Syndrome. Rosemary could be any age, but the point is, all her life, she has struggled socially. Maybe that’s because she has specialized interests that her peers don’t share. Maybe it’s because she’s quite brilliant and more mature than most of her peers, or maybe it’s because she’s not “wired” to pick up on subtle social cues like body language. For whatever reason, though, Rosemary has a hard time with people. She’s been through therapies for this, but they don’t seem to help much because the “social model” of disability is always there. The “social model” that says, “Rosemary, you need to try harder to enjoy what your classmates enjoy/make small talk/understand what people are trying to tell you.” It is a construct that tells Rosemary that in order to be accepted, she, and only she, must change.

I see several problems with this social model, but I’m only going to zero in on  a few. Here they are:

1. My biggest problem: Why is it that within a social context, the burden to change, or to “try harder,” or whatever you want to call it, is always squarely on the shoulders of the PWD? It’s as if we’re saying it’s that person’s fault for being born “wired” to interact differently! It’s as if we’re saying, “If you weren’t so _____, you’d have friends, so shape up.” Plus, sometimes the word that goes in that blank is a negative, unfair word. For example, we might call a person who has autism “rude” or “spacey,” but they’re not trying to be that way. They were born–I’ll even say created–with the tendency to see and interact with the world differently. Sometimes, that translates into a tendency to seem to be “in their own world.” But when you think about it, sometimes our world sucks. Who doesn’t want to escape into his or her own world now and then, huh? The point is, what’s rude to you may be totally normal to the PWD, or what’s normal to you may be strange or even freaky. “Trying harder” may improve some manifestations of this–such as if a person with autism has a tendency to bang his or her head on hard surfaces. And sometimes, that improvement is needed. But sometimes it’s not. And “trying harder” will not make the disability go away.

2. We often say we love and appreciate the PWD “just the way you are,” but in the next breath, we’re urging him or her to be different. Sometimes we’re even insensitive enough to use the word “normal.” For example, remember Carly Fleischmann? Her parents told her, “You don’t need fixing,” and they meant it in all sincerity. But they also sent her to “respite care” in part to “work on [her] behaviors.” Do you hear the contradiction there? Again: yes, sometimes, some disabilities cause issues that need to be dealt with. For instance, someone with ADHD may need help focusing and calming down so he or she can do well at school or work. But even then, the help should be as natural and encouraging–not discouraging–as possible. When we say, “I love you as you are” to a PWD, let’s mean it!

3. Let’s think about this. What would “changing” really do to the PWD who you want so much to be different or “normal?” For instance, let’s go back to Rosemary. Sure, having Asperger’s Syndrome can be painful for her. Maybe her loved ones wonder, wouldn’t she be happier if she could do ____ better? Maybe–but one, did anyone ask her? Did anyone inquire as to what kind of help with Asperger’s Syndrome she wants? And furthermore, let’s pretend for a minute that the people around Rosemary got their wish. What if she was “typical?” The people around her might lose someone totally unique and cool, with brilliant ideas and a fresh, honest way of looking at the world. I don’t think most of us would truly want that.

The medical model of disability, as it stands, is often discouraging and dangerous. Yet, many people are unaware of another dangerous way of approaching disability–the social model. Let’s start telling PWDS, “We love and want you,” rather than, “We love you, you’re perfect–now CHANGE!”

It’s Been a Long, Long Time…

Oh, my goodness, readers, where have I been? Well, I’ll tell you where I’ve been–redoing, for the third time, my second full-length novel in order to get it published this winter. Plus, the recent government shutdown has thrown off my internal clock and personal schedule. But I have not disappeared completely. Sometimes it’s just a matter of deciding what to post and when. So, as a way of reorienting myself to the blogosphere, here is today’s topic:

“Just for Me”: Blessing or Curse?

Here, I’m not talking about segregated classrooms or job sites that are billed as “just for” people with disabilities. We’ve seen the dark sides of those already. I’m talking more about the “just for PWDs” phenomenon that you’re likely to see in the everyday world. For example, Halloween is approaching. On the surface, it’s a fun holiday for kids and adults alike. You get to dress up in creative costumes–always my favorite part–gorge on candy, and depending on how you feel about this sort of thing, indulge in a good scare. But for some people with disabilities, Halloween can be really scary. If you have autism, Halloween could mean sensory overload in the extreme. For someone with an intellectual disability, it could be disconcerting at best to see the friendly faces you’re familiar with around town morph into frightening beings. (Even if someone’s costume isn’t traditionally frightening, many can be colorful, loud, or flashy enough to be off-putting). People with physical disabilities could miss out because navigating a dark, obstacle-filled neighborhood to trick-or-treat, or an unfamiliar house to go to a party, could prove difficult at best.

So, what to do? There are some organizations, such as shopping malls, that would suggest hosting a celebration only for PWDs. (You might also see these organizations hosting a separate “meet Santa” event for kids with disabilities at Christmas, or a separate carnival during the summer, or–you fill in the blank). And on the surface, this isn’t a bad idea. The intention is not to segregate or make anyone feel bad. In fact, the intention is to make sure PWDs of all ages get to enjoy the same things everyone else does without worrying about the effects of said disability at every turn. I went to a summer camp like this as a kid, and because all the kids were assigned an individual counselor to see to their needs, I didn’t feel like an anomaly. Such “just for me” setups don’t have to be bad. But as with too many things in the world of disability, the difference between inclusion and segregation all depends on how these setups are handled. Because the line between inclusion and segregation in the world of disability is a thin, ever-shifting line. Sometimes it can be as treacherous as those swinging bridges or trapdoors you sometimes find in haunted houses or haunted mazes.

So, how do you know when a “just for me” event is inclusive, and when it’s segregated? The answer is deceptively simple: are people without disabilities (other than parents or aides) participating, too? Too often, the answer is “No, because this event, this place, this whatever, is meant only for people with disabilities.” Sometimes, the event is only meant for one type of disability, such as autism or sensory processing disorders. Unfortunately, what you get there is an example of reverse discrimination, or positive segregation. You also get yet another example of the “mainstream” world drawing a line between “us” and “them.” As if people are saying, “You can’t benefit from this because you’re NOT disabled!” Ironic, eh?

Of course, the argument here is that celebratory atmospheres like Halloween or Christmas parties are by definition not disability-friendly. They’re loud. They’re flashy. They have physical aspects that shouldn’t be “pared down” just because one participant out of ten, a hundred, or even a thousand, has a disability. But what those who make this argument forget, or choose to ignore, is that in refusing to modify on the grounds of, “Modifications would wreck this event” shuts a whole group of people out. And as we’ve discussed countless times before, having a disability does not preclude someone from wanting to have fun.

The question becomes then, is there a happy medium between “just for me” and “no modifications at all?” Sadly, at very large events, there might not be–yet. But that doesn’t mean those large events can’t, or shouldn’t, change, or that individuals can’t help that happen. In the meantime, I would urge readers with disabilities, or loved ones of those with them, to work on change at the local level. For example, let’s say that the big event in your town this Halloween is trick-or-treating, but your child with a disability is hesitant about going for reasons I explained above. Try these ideas:

  • For someone with a physical disability: Ask if the trick-or-treat giver, or party host, can come outside the house and either hand out treats there or discreetly escort your guest inside, past any obstacles. (Note, this doesn’t mean your neighbor has to go out and put up a ramp or rearrange his or her whole house–it’s just a modicum of extra effort and consideration)
  • If someone’s disability means costumes are a little freakier than usual: Ask if your loved one can come and see the costumed person getting ready for the festivities, so he or she will more easily remember that that person is sweet old Mr. Smith, not a real vampire. Or costume-wearers could briefly break character to greet the person with a disability in a more “everyday” way (without having to sacrifice the costume or makeup because one or two people might be scared, which some people with disabilities might fear happening)
  • For someone with autism or sensory processing issues: This one might be trickier, because things that assault the five senses are everywhere, especially in a celebratory atmosphere. Try obtaining a rough schedule of the event ahead of time. For example, if you’re taking someone with autism to an elaborate party or a performance, ask someone on the “inside” to provide cues for when, say, the lights might go out unexpectedly, a loud noise will occur, and so forth. Also, make sure your loved one’s personal sensory experience is comfortable (e.g., no itchy or confining clothes if that’s an issue).

I hope these examples are showing that “all or nothing” thinking doesn’t have to mar one’s celebration of any holiday or happy time. Even if the environment is not classically “disability friendly,” there are plenty of small things individual people can do to make sure everyone is included. So don’t let modifications scare you this season. They’re less intimidating than they look, and at the end of the night, they provide more treats than tricks.