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Archive for January, 2014

Pride and Prejudice: PWDs and the Phenomenon of “Protective Prejudice”

Good evening, readers,

First, I’d like to say thank you to the writers and staff at Psychology Today for providing the idea for this post. Being an armchair shrink, I find psychology interesting, period, but this gem was particularly so. And you guys at PT will be glad to know that I did find it a “gem,” rather than just calling it that like I sometimes do when I’m being sarcastic.

Anyway…

So last night, I’m sitting at my gym, exhausted after a ten-mile workout, and darn it, I forgot to bring a book. My ride was still at the Zumba class going on, so I grabbed the aforementioned magazine, the November/December 2013 issue. And right up front, I see this article on a phenomenon called “protective prejudice.” Of course, you’re probably wondering, what is “protective prejudice?”

The author of the article explained it thus: an “instinctual” reaction that humans have when confronted with disease. For example, to borrow from the magazine’s example, let’s say that Michael has a rare genetic disorder that causes noticeable skin lesions. Let’s say that Jeff will, also because of a genetic condition, never grow beyond four feet or so, even as a fully grown man. Let’s say that Angelique has what’s known as Bell’s palsy, a condition which means that one side of the face can become “locked.” As in, even if you smile, that frozen half might look like you’re scowling.

The author of the article, though she didn’t use all the same examples I just did, made the point that these people (presumably based on real folks) have to explain these conditions to people every day. Thus, we have “protective prejudice.” That is, some people–I would hope and pray most people–will be understanding when confronted with one of these conditions. But according to PT, humans have this instinct that says, “Go away! Don’t give me what you’ve got”–even if the thing in question isn’t communicable. It was explained that in theory, this is what humans learned to do to avoid getting all kinds of diseases, not just ones that, so to speak, “look weird” or look scary, or cause disabilities.

To a point, I can buy that. For example, right now, my entire immediate family is ill with a stomach bug, the likes of which reminds me of Montezuma’s Revenge. So their reaction? “Stay away–you don’t want it!” My reaction? “Yeah, you’re right, I don’t want it!”

The problem comes in, though, when we measure “protective prejudice” against the modern world, particularly when it comes to conditions that are more genetic and/or disability driven than actual diseases. (Disability is, 99.9% of the time, NOT a disease, despite the fact that the medical community often describes them as such). We have, as PT puts it, gotten to a point where we overreact to disease and disability. That is, okay, we don’t want disease. Being sick sucks. And I can even understand that, if you don’t have a disability, you wouldn’t necessarily want one. Plus, most of us would like to believe we’re too polite–dare I say compassionate–to verbally say to a person with a disability, “Ew, go away!”

I contend, though, that we don’t have as much compassion as we should, or as we claim. Why? Because our words may say “you’re okay, your disability is okay,” but our actions and body language scream, “GO AWAY!” I don’t think it’s because we think we’ll “catch” what the PWD has, whether that’s Bell’s palsy, dwarfism, cerebral palsy, or whatever. I do think we’re scared. It’s another result of that instinctual recoiling from what’s scary or threatening.

But just because prejudice might be instinctual, it doesn’t mean there’s a modicum of excuse. After all, 99.9% of us wouldn’t act prejudiced, silently or vocally, toward a Hispanic person and say, “I got scared because Hispanics are ‘different.'” Yet, we do it to PWDs, whether verbally or not. We even tell ourselves, on some level, that it’s okay. Because that person in a wheelchair may be strapped in, their limbs jerking, or drooling, right in front of us. That person with an intellectual disability–a fully grown person–may be throwing a tantrum right in front of us. We may not even know “that person,” but we were taught to fear PWDs on some level. Or maybe we see them in public and instinctively protect ourselves from their realities.

It’s not okay. Why? Because “Prejudice is a weaponized emotion.” Emotions can hurt. Even happiness can hurt. Proverbs tells us that “even in laughter, the heart may ache.” But prejudice, I contend, not only hurts. It kills–the spirit if not the body. It is a weapon, and it’s as lethal as an IED (Improvised Explosive Device).

I learned this lesson the hard way, before reading the article. You see, in some twisted way, I’m discovering I’m prejudiced against myself for having a disability. I’m not sure entirely why, but my guess is that, because my CP is mild, I’ve absorbed this idea, from childhood forward, that I don’t have the excuse to “act disabled.” (Whatever that means. But I’m guessing you can come up with some examples yourself). And whenever something does happen that makes me “look” like someone with CP, I feel like I let myself down because, “Oh, great, now I look like the stereotype.”

This got to the point that it came up when my mom and I were discussing online dating as a possibility for me to find a romantic relationship. She asked me if I’d ever seen any sites for PWD dating. Now, I could’ve said, “I haven’t looked yet” which was true. I could’ve said, “Mom, I’m not sure I want to do that–what if he needed more care than I did, or what if his disability was even milder than mine and he thought I was too needy and–well, disabled?” Also true. What I said instead was,

“If I did that, I’d end up with somebody who sits in a wheelchair and slobbers.”

I know. I was appalled, too. I don’t think I fully realized until then that having a mild disability can plant you square in accepting the stereotypes. This was partially true because I have only ever met another PWD with a mild disability once or twice. In fact, the very first adult with a disability I remember meeting, as a teenager, was a man in my church who used a wheelchair and could not control his head, limbs, or bodily functions.

Not that that’s an excuse. It’s not. I still engaged in protective prejudice, even if, on some level, it was “just” because of self-doubt.

I learned this lesson the tough way, readers. Don’t you do it, too. Remember, PWDs wheel among you–but they walk and drive, too. A good number of us are invisible. Don’t fear those of us whose disabilities are visible–and then maybe those who are invisible will want to come out more.

Winners, Losers, and Leftovers: Another Form of Inspiration Discrimination

Good evening, readers,

To say I’ve been preoccupied and got a late start today is an understatement, but here I am, with a new topic. As often happens, this topic came from real life.

My brother and his girlfriend of one year have been entered in one of those Valentine’s Day contests where people vote for the winner on Facebook. A great idea, except that he jokingly said to my mom that he noticed one competitor was a Marine, so should he say in the couples’ blurb that his girlfriend donated him a kidney? Funny, maybe, but also quite thought-provoking. As in: you can’t beat a Marine, so why even try? Indeed, why?

Now, I’m not saying our veterans don’t deserve the utmost respect and appreciation. You bet your last cent they do. I know it’s kind of clichéd, but seriously–walk through a minefield of Improvised Explosive Devices, manage to keep all your limbs and senses, and then come back and whine to me about how bad your day was because your car wouldn’t start. Seriously, folks. No matter how you feel about the U.S.’ involvement in current conflicts, those troops deserve support. But my question is: do they deserve, or more importantly want, an attitude that says, “You can’t beat that?” Does a person with a disability who enters any kind of competition deserve an attitude that says, “It’s no use competing with that person?”

I say no. I say it’s another form of inspiration discrimination. (For that, check out the December 2011 archives). “Inspiration discrimination”: as in, what happens when we make a big deal out of a basketball player scoring twenty points in one game because he has autism. As in, no autism, no big deal. What happens when a person with a disability does something in everyday life that TAB people do all the time. As in, “Oh, my! Annie walked two steps!” Of course, if Annie’s really been working on that and faced a ton of obstacles, fine, but to go completely cuckoo? No, thank you.

And it happens with competitions, too. For example, in the film Miss Congeniality, protagonist Gracie Hart’s pageant coach tells her that ten out of eleven years he worked on the circuit, his girls were crowned. “The year we lost,” he says, “the winner was a deaf-mute. You can’t beat that.”

I wonder what the ASL sign for “Excuse me, where’d you get your source from,” is?

It happened when I entered my mother in a Mother’s Day contest sponsored by the local news station. Of course, they played up my CP because they’re the media and that’s what they do. But we lost to a mother whose son-in-law was in a serious accident; she now spends her days changing his diapers and feeding him. As I said to Mom, “You can’t beat that,” and I wasn’t being too serious. What I meant was, on the “disability hierarchy,” the son-in-law beat me out, because his disability was considered “worse” than mine. That’s not fair, either. The idea that we have a disability hierarchy is about as tough to get rid of as a grease stain out of velvet. I myself struggle with it. But that doesn’t mean the hierarchy should exist.

I know the arguments against this, so let’s deal with them.

-“What, you’re against inspiration?” Yes, I am–if your attitude toward it is exploitive. If you take the disability away, and no longer have a story, that’s a problem. Marine, who fought for his country, loses his legs and still swims like a champ? Fine, because it’s also inspirational that he fought for his country. Pretty girl, who happens to have a disability, ends up in the newspaper because she went on a date, that a classmate was “inspired” to take her on? No sale!

-“People with disabilities can’t win competitions if they’re not inspiring.” Really? Is that because you think we’re all bitter whiners, or all useless? I’d like to inspire you to move 30 feet away from me right now, before I kick your ever-loving able-bodied butt.

-“People with disabilities need to be entered in contests by others because they won’t/can’t do it themselves.” Maybe some of us can’t, or won’t (because some of us are introverts). But you might want to ask first!

-“Disability is inspirational by nature. You just can’t beat it.” Okay. I’m not saying winning isn’t great. I’m human. I like to win. But please, I’d rather do it on my own merit than because a TAB person thinks it’s a big deal that I breathe. To go along with that–maybe we can’t “prove” that a person with a disability doesn’t win because of disability–but we can examine the way we compete with each other and try to improve that.

-“In a contest, if the disabled person doesn’t win, she’ll scream ‘discrimination.'” Stereotype police–I wanna see your license, registration, and brain cell activity! To go along with that: that stereotype has roots in the fact that PWDs have been discriminated against in competitions for far too long. Eliminate the real discrimination and you’ll eliminate the stereotype.

People with disabilities, like the rest of us, want and need to feel like winners. Let’s make sure, though, that we’re making their experiences of being winners authentic. Otherwise, they’ll keep feeling like inspirational “leftovers” whose trophies are spray-painted iron.

What I Hate About You: Hate Crimes Against PWDs–Why Aren’t We Preventing Them?

Hello, readers,

This is another post that was a holdover from December 2013, simply because I didn’t think it appropriate to talk about hate during the holiday season. This is particularly true since my Savior came to earth to reach us all, in all our sin and hatred. However, because we are humans and because we often refuse to listen, hatred still exists. And one of the most hated groups out there? You got it: people with disabilities.

Before we go any further, I would like to take this opportunity to reassure you that I know many other groups–almost any minority group you could name–has also experienced hate. Black, Asian, LGBT, Jewish (that one, I’m especially sensitive to–I never got over school lessons on the Holocaust), Muslim, you name it. I get it. I’m not saying my minority group is any more important than yours. But here’s the thing. If hate crimes are perpetuated against those groups, they are often reported as hate crimes. As in, people, even outside the targeted group, recognize: the perps did that because they despise this group for nothing that resembles a good reason, and they must be punished for their actions, not only because the actions were wrong in themselves, but because of the hate behind them.

Not so for people with disabilities, I’m afraid. According to civilrights.org, many hate crimes against PWDs are “mislabeled as abuse.” Of course, those crimes are abusive in nature. It is both abusive and neglectful to, say, starve a young girl with cerebral palsy to the point that she weighs only 68 pounds, and leave her to die. It is abusive and neglectful to allow a family member with Down Syndrome to starve as well, and also be covered with sores and scabies, and then, when he finally dies, only be concerned about losing the poor man’s Social Security check. And yes, these things happened–they are documented in news sources, including but not limited to The Huffington Post. But according to civilrights.org, the hate crimes are generally only labeled as abuse from a larger system, such as a school or a group home. Thus, the case is almost never “transferred to the criminal justice system” because it’s seen as something that another jurisdiction should handle.

Perhaps more disturbingly, according to victimsofcrime.org and other similar sources, people with disabilities often do not report hate crimes. This can be because the person or people victimized are not able to communicate–or have not been given the means to do so–because those people are under threat of more abuse, or because the perpetrator of the crime is a family member or “friend.” That part makes me particularly upset. It reminds me of a pet that, even though abused by a master, will return to that human because it feels, on some level, that there is no other choice and no other avenue through which to get care. But despite what certain hateful individuals would have us all believe, people with disabilities are not animals.

On some level, I do understand the difficulty of reporting and dealing with hate crimes against PWDs. When you call something a “hate crime,” you are saying, “I know the motive,” which can be a tricky thing to say at best. For example, leaving disability out of it for a second: a kid who sprays graffiti on an Amish farmer’s barn might just be a stupid kid. He might not actually hate Amish people. Or at least, that’s what he says. But the problem is, what he did is still a crime, and it’s still taken seriously because as far as the authorities know, the Amish person in question probably didn’t do anything to provoke that kid. So it could still be considered a hate crime, all complicated definitions aside.

Here’s my question, then: why do we allow “complications” to muck up the labeling and conviction of hate crimes against PWDs?

Let’s really think about this for a minute, as depressing as it may be:

-If a kid told an Asian classmate, “You’re a slant-eyes and need to ride the slant-eyed bus,” it would be a racial slur. If that same kid then beat up the classmate? Hate crime. But if that same kid told a classmate who used a wheelchair or had an intellectual disability, “You’re a retard and need to ride the retard bus,” it’s simply bullying. Yes, that kid might get a slap on the wrist, but that’s as far as it goes. Besides, the school system might say, the disabled student must have done something to provoke it–kids with disabilities are aggressive by nature!

-If an employee who was a Muslim started a new job and was harassed and told, “We’re not sure you can work well in a non-Muslim organization?” Harassment and possible hate crime. If it happened to an employee with a disability? This would be called “concern,” because after all, the other employees would just be pointing out that they’re not sure the sweet little person can handle the physical or mental demands of the job. That situation would likely be completely brushed off.

-If an LGBT individual were institutionalized against his or her will because of “deviant behavior,” and then endured abuse such as having to lie in his or her own feces, having a catheter stuffed in his or her mouth, or being beaten? Major hate crime. If that were a PWD? Well, they needed to be institutionalized. Yes, the behavior described is abusive–but that’s not the criminal justice system’s problem. Call Social Services. It’s not hate–it’s just unfortunate abuse.

Are you getting the sense of a double standard here? I am. And what I say is: if we can protect everybody else from hate–because that’s what it is–why aren’t we protecting PWDs? Do we seriously think they are “too sensitive,” must have provoked the crimes, or must be taken care of, whether or not the definition of care is substandard? We’d all deny that if asked, but our actions say something else: we don’t really like PWDs in our society. In fact, some of us hate them.

I don’t have to explain to you what hate can lead to. I’ll just leave you with a few words: Auschwitz. Tereblinka. The Cambodian killing fields. Rwanda. The Sudan. We decry all those examples…

But who is hearing the cry of the person with a disability: “Stop hating me”?

Heartwarming or Heart-Wrenching?: The Portrayal of PWDs in the Media

Hello, readers,

As promised, I have returned with a brand-new post for your reading, commenting, and debating pleasure. More than that, it is my twenty-eighth birthday. I intend to use today to celebrate not only a new year, but also my new work and hopefully, changing life. However, as I wrote last week, it does continue to disturb me that many PWDs have a very difficult time changing their lives and images, particularly the public perceptions of them.

One of the most common and prevalent perceptions, and the one that arguably disturbs me the most, is the one we can find in the media. Now, we’ve already discussed this a little bit, such as in the post “No More Dead Disabilities,” which discusses the trope in literature, television, and movies where any character with a disability is treated as a spoiled brat, morality pet, or combination of the two. He or she generally exists in the plot of the story, not to be the main character, not to do anything heroic, not to grow and change and develop–but to impart some moral, sometimes spiritual message, and then to either be cured or killed off. As said, that trope disturbs me like you wouldn’t believe. There are also other versions of this same trope, like the one where a character with a disability exists solely to show temporarily able-bodied (TAB) characters that (A) You shouldn’t make fun of “the handicapped” or (B) “The handicapped” are just like everybody else.

Today, though, I’m going to discuss a different treatment of PWDs within literature, television, and movies–again, the media, for short. I’ll call it the Heartwarming Disabled Person (HDP) Trope, where “Disabled Person” is used to reflect the attitudes of the involved TAB persons, from the characters to the authors, directors, and producers.

So, what is HDP, exactly? I’ll define it this way: a trope or situation that occurs when a character with a disability (CWD) exists to tug on the heartstrings of others. This character does not need to be cured or killed off; in fact, that would probably damage their purpose in the story. No, this character exists to live, and possibly to do a little growing and changing, but essentially to show TAB characters “how the other half lives,” how to be more compassionate people, and so forth. At times, this is because the CWD’s disability is quite severe, in which case the portrayal can be downright saccharine–more so than usual. At times, the CWD may have a walk-on role, wherein he or she serves as a temporary Morality Pet. And sometimes, the CWD takes on a starring role in the story, but it comes with stipulations–for example, the character needs to have a “sixth sense” or a savant-like talent. Otherwise, that character is not important.

So, how do you know when you’re dealing with HDP? Let’s take a look at a few examples. Also, remember: I’m not trying to say that a piece of literature, movie, or television special that uses this trope is in itself bad. Some examples are very good, for what they are. I am, instead, trying to say that constantly placing people with disabilities in the role of “heartwarming” and “inspirational” may make other people feel good, but it’s also shortchanging the PWD out of being a real, three-dimensional character. Thus, the trope is pointing out something negative about real life, but we’ll get to that in a minute. On to the examples:

A Christmas Carol. I actually meant to discuss HDP at Christmas, because heartwarming, heart-tugging characters with disabilities tend to populate Christmas specials (and Hanukkah and Kwanzaa specials, I bet, if we had a lot of those–which is a whole other problem)–in droves. Now again, on its own, A Christmas Carol is not a bad story. It’s one of my favorites. And as discussed, Tiny Tim is more a product of his time period and the issues of it than Charles Dickens consciously trying to create a pathetic person (as far as we know. If I die and find out Dickens had other intentions, well, shame on him). However, Tiny Tim is a minor, saintly character. He embodies the stereotype that PWDs are always happy and content. Yes, he is instrumental in Scrooge becoming a better man–but what were the consequences for this innocent child if Scrooge hadn’t changed? Right: he would’ve died! As it is, Tim becomes like Scrooge’s adopted grandson. At the end of the book or movie, we’re not meant to appreciate Tim Cratchit as a round, developed character. We’re meant to go, “Awwww….”

A Dog for Christmas. Yes, another Christmas movie (put out by Hallmark, which I love, but they’re already maligned for being sappy. You’d think they wouldn’t make things worse). Todd, the character with a disability (mild to moderate intellectual) is surprisingly well-written, for his character type. He has a deep interest in animals. He’s compassionate toward animals and humans, though not so much that he comes across as a saint. He disagrees with his parents, largely because they treat him like a child even though he’s in his twenties. But again, his story is meant to be heartwarming. It focuses on Todd’s relationship with a dog he temporarily adopts for Christmas (and names eponymously). Because of this relationship, Todd’s family, especially Dad, warms up. They all become better, more merciful, wiser people–and Todd gets to keep Christmas after all! We’re not meant to focus on Todd learning anything from Christmas, or his family learning to treat him as an adult. We’re not meant to see beyond the classic setup of “a disabled, somewhat alone, young man and his dog.” Join me now: “Awwww…”

Larry. This one is a non-Christmas film that I was forced to watch in high school psychology. It made me so upset, though then I couldn’t have pinpointed why, that I blocked most of it out. The basic premise involves–who else–a man named Larry, in his forties, who has grown up in an institution for the mentally/intellectually disabled. He was not born with those disabilities himself, but now acts as if he has them because he doesn’t know any other environment. The whole movie is about whether Larry should get to move out of that environment and experience the real world, but the way the movie is set up, we’re not meant to cheer him on. We’re meant to study him as he learns to do simple tasks, for which he frequently gets rewarded with candy, and speculate on whether he will succeed outside the institution. Whether he does or not, there’s no character development involved. This movie involves the effort to get viewers to say, “If Larry can live his life and try so hard, what am I complaining about? And look, he really did learn how to walk with ‘long, slow strides!’ Aw!”

Rain Man. No pun intended but, oh, man. I’m not going to go into the premise of this one because it has, whether you agree with this or not, become a “classic.” In fact, Dustin Hoffman has won awards for his portrayal of Raymond Babbitt, despite not having disabilities himself, which brings up a whole set of other issues. Anyway… Charlie Babbitt gets his brother Raymond out of the institution in which he lives, and they embark on what we think might be a brotherly relationship. But we learn Charlie is just using Raymond’s talents for counting and remembering to further his own gambling hobby. The writers do focus on some aspects of Charlie having a new brother he never knew before, but it’s mostly about how frustrating Raymond’s behavior is for Charlie, which paints Raymond in a negative light. And when Raymond is finally seen positively, he becomes a victim of HDP, by showing Charlie it was wrong to treat him like he did, and that it’s nice to have a brother. Audience: Awwww…

Flowers for Algernon. This one, I just plain can’t stand. It’s not because main character Charlie doesn’t change. He does. Thanks to an experimental operation, Charlie, who has a severe intellectual disability, does develop a genius IQ. But it’s temporary, and the further he eventually slides back into disability, the more pity we’re meant to feel. Just take a look at his misspelled journal entries, where he asks someone to please feed Algernon for him (a test mouse he’s befriended, who will also soon lose his intelligence, having gone through a version of the same surgery). I would argue that we as an audience are even meant to feel warm and fuzzy, and proud of Charlie’s “bravery,” when he decides he must go into a state institution to live the rest of his life. Here, the “Awwww” factor is actually coupled with a, “Thank God that’s not me,” plus the whole “If he can do it, so can I” thing.

Heidi. Klara Sessaman uses a wheelchair and has since she contracted a spine-damaging illness (some versions, like the Shirley Temple film, replace this and say she hurt her back in a fall). Klara doesn’t develop much as a character, but she does learn to walk again, and shows us that we too can overcome the disabilities in our lives. You know what’s coming…

Jimmy. (By the way, why are so many of these works somehow named after the CWD? Is it that directors and producers think, “If we stick a disability on this person, viewers will just have to watch, so don’t bother being creative with the title because it’s not about the character’s journey anyway”?) This one is based on a novel by Robert Whitlow. The producers, including Whitlow himself, do get a little creative, in that Jimmy gets to testify at a drug dealer’s trial–but that’s because Jimmy has the sixth sense of being able to remember everything he hears. As a bonus, he also sees and communicates with angels, whom he calls “Watchers.” A big deal is made of Jimmy’s almost psychic abilities, to the point that one wonders, if this character weren’t psychic, would he even be here? As to the HDP factor: Jimmy is seen as inspirational, not because he helped put away drug dealers, but because he lives his life, always smiling, and even overcomes his fear of water so he can be baptized! Audience, that’s your cue…

Had enough? Yeah, me, too.

So I gotta ask myself: why does the media continue to portray characters with disabilities this way? Why can’t characters with disabilities be normal people, with normal problems, living normal lives? I have a theory. It’s not a pleasant one, but it has to be said. We’re scared of people with disabilities, folks. And we alleviate that fear by saying, “Well, at least they can inspire us and make us feel good.” Thus, we create fictional characters–safe alternatives to real PWDs–in order to serve our own purposes. I’d also like to add that I personally think this is why we don’t see as many representations of female PWDs in books and movies like the ones I just talked about. (Notice that only one featured a girl with a disability, and she wasn’t even the “star.”) My theory is that for some reason, the media moguls out there think it’s even more heart-tugging when a boy–the supposed “stronger” sex–becomes disabled, and thus “overcomes.” It’s like, why do this to girls, because they’re more fragile anyway? Which aside from being anti-disability, is really anti-feminist when you think about it.

Like many issues pertaining to disability, this one is going to be quite difficult to change, especially since most of us don’t have an “in” with famous authors or movie producers/directors. But we can help that change begin. How? By educating ourselves and our children about real PWDs (and that includes interacting naturally with them in public). We can petition our local governmental bodies to make more places accessible so that PWDs can go out in public like everybody else. We can use the inspiration we feel from knowing, watching, or reading about PWDs to raise awareness, not of their inspirational capabilities, but of their whole selves. Some of us might even try writing our own stories about real, dynamic people with disabilities. There’s a lot we can do, folks, so let’s go out there and do it. Our hearts, and theirs, will thank us.

Come back next week for a post entitled: What I Hate About You: Hate Crimes and People with Disabilities

 

New Year, New You–Except if You Have a Disability: A New Image for PWDs

Hello, readers,

After a month of craziness, which included battling a cold, editing a novel, and preparing for Christmas (which turned out to be great, by the way), I have returned in time for the first workday of 2014. There will be no internship this year, thank goodness. And I have scheduled time for blog posts this year so that they will be much more frequent. In fact, that’s a big change I’ve made this year already.

You see, previously, my life had been quite unstructured. Not because I don’t like structure–I do. It’s just that when you don’t drive and are almost completely housebound, and when finding work is difficult or sporadic, you do whatever feels good or right in that moment. You do whatever takes the edge off the isolation. So if that’s sleeping until nine a.m.? If that’s watching several Monk or Touched by an Angel episodes in a row, or taking a nap, or exercising by jogging around the garage? Fine. But thankfully, yesterday, I got a New Year’s call from my editor, who had some ideas about how to help me turn writing into a full-time job. This included scheduling time to write something, every day, for several hours, as if I were at a nine-to-five occupation. And so far, it’s working out well. One of the things on my docket is making real, scheduled time for this blog, so here I am, and hopefully, here I will be for the rest of this year.

It occurs to me, though: I had the opportunity and the support needed to change my own schedule and thus, my own image of myself, which up to then had been of an isolated woman trying her best, but not going anywhere in life. I’m guessing that a lot of people with disabilities feel the same way–as if they need to change their lives and their images. Why shouldn’t they? They’re people. They know what an image is, in all their own ways. They know what New Year’s is for and have probably seen many people making resolutions. You know the ones: I’m going to lose twenty pounds. (There must be a direct correlation between that resolution and holiday candy, cookies, cakes, and other assorted goodies). Here are a few more:

1. I’m going to find romance. I’m curious as to whether this one actually has happened for anyone out there in the year allotted.
2. I’m going to make more money. How much more would that be? When do you know you’ve made more?
3. I’m going to eat healthier. Okay, so what does that mean for you? If you’re living on fast food, does it mean quitting cold turkey or ordering salads for awhile, then working up to doing your own cooking? Does it mean no soda or sweets at all, or just a couple days a week?
4. I’m going to take up ____ (fill in sport, language, activity). Okay–does that mean you’re going to dabble in it, or is this something that you want to excel in? Or is it something you want to try once because it’s on your “bucket list?”
5. Oh, this one I love: I’m going to be a better/nicer person. Okay, great. We could all stand to be nicer, better people. But please define for me what that means to you.

Of course, part of my point is that even though most people make this type of resolution every year, many people with PWDs don’t get to do that. Why? Well, for a few reasons:

1. Nobody thinks they can change. I’ve seen this over and over: once you’re diagnosed with a disability, which for some people is before they’re out of babyhood, you are defined in terms of what you cannot or will not ever do. At first, the doctors and therapists do that. Then, when you get old enough for school, the teachers–usually special ed–do it, using IEPs and other “plans” to further define what is expected of you and what will happen if you do not comply. The expectations are generally low, and “non-compliance,” to those teachers, could mean just about anything they don’t like. The same goes for when you grow up (allegedly, because you’re often still treated as childlike) and your life is handed over to job coaches and group home supervisors. If you ever said or otherwise indicated you wanted to do something different, you would be told you can’t because that’s not a “realistic goal.” The experts say of PWDs all the time, “He/she will never ____. He/she will always be ____ (unable, unwilling, whatever).”

2. People think that those with disabilities don’t understand when something needs to change. For example, let’s say that a teen with severe cerebral palsy communicated to his or her parents that, “This year, I want to use a technological speech device, not a picture board.” Best-case scenario, the parents or guardians are able to support that (and if money is an object, they’re able to get help with that). But sometimes, the response that teen gets becomes, “No, you’re doing fine with the picture board,” or, “Why do you want to do that?” or, “You can’t; those devices are too hard for you to use.” Sometimes, the parents will even go to “the experts” and say something like, “Holly told me she wants to go to regular classes this year, but she just doesn’t understand what that means.”

3. People with disabilities have been taught and shown, consciously or not, that their situations are permanent and possibly hopeless. For example, maybe Micah wants to live somewhere besides his group home, but has been told that he shouldn’t leave it because it is “the best place” for him. Maybe Louisa wants to find work at a real job, but has been told that she “needs” to stay at her menial job with a coach, or shown she is incapable of real work because she’s accused of messing up tasks, not meeting some goal on a “plan” related to her job, or slowing others down. I’ll say two things to this: If you’re the person feeding this hopeless mentality, it’s inexcusable. You need an attitude adjustment a lot more than you need to lose weight or make money. And put yourself in the PWD’s shoes: if you didn’t believe wholeheartedly that your life could change for the better, why would you try to change it?

4. People with disabilities often already have goals set for them by others. But–you know what I’m going to ask–are those goals the ones the PWD would’ve chosen? Are the people around that person harping on goals that are not relevant, meaningful, or desired?

5. People with disabilities may not know what it means to have a personal goal, to set it, and to achieve it. Remember, IEP goals are often not “personal” because someone else set them. The same goes for “adult” goals that other people set. Because so much has been done for him or her in this area, the PWD might be shocked or flummoxed when you say, “What do you want to do, Olivia?” And sadly, too often, those emotions are interpreted as not knowing the answer. Trust me: PWDs have their own goals and their own answers, and their goals are just as valid as yours. For example, in Riding the Bus with My Sister, a movie I don’t particularly like, but have seen, Beth, who has an intellectual disability, tells the “experts” in her life that her big goal is to go to Disney World with her friend/boyfriend Jesse. This is pooh-poohed for not being a “real” goal. But it was. And let’s be honest here: how would you feel if somebody said, or acted like, your goals weren’t real? Right–so why do that to people with disabilities?

Okay, so that’s part of my point. But here’s the other one: People with disabilities need the chance to meet their goals, and the chance to have those goals be measurable. What do I mean? Well, let me spell it out. Remember those common resolutions I listed earlier? Yeah–well, here’s a question. Are they measurable? Right: except for the “twenty pounds” one, they were not. “More money” could be any amount. “Take up ___” could mean dabble, excel, or something in between. In fact, I think a lack of measurability may be why we all give up on our resolutions by January 15 (if we’re lucky). But what happens then? Right. We throw out the goals and say, “Maybe next year.” But if a person with a disability doesn’t meet a goal, he or she is reprimanded for it and possibly punished. Double standard much?

So, here’s my challenge. This year, let’s do two things. Let’s encourage the PWDs around us to make their own resolutions and goals–ones that mean something to them, that they really want to do, even if it’s not related to “life skills” or therapeutic activities. Let’s help make those goals measurable. And then let’s give ourselves measurable goals–and expect ourselves to meet them, just like PWDs are expected to meet their goals (no reprimands or punishments for slip-ups allowed!) And while we’re at it, we can change not only our images, but the images of people with disabilities–maybe for good.

Tune in next week, when we talk about what the image of PWDs actually is, particularly in the media. See you then!