You are entering the Independence Zone!

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!

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Comments on: "New Year, New You–Except if You Have a Disability: A New Image for PWDs" (5)

  1. Glad to see you back! My wordpress dashboard doesn’t always work for me, but hopefully I’ll be able to still keep up with your work. I’d also still love to hear your opinion on my “love the sinner, hate the sin” piece, but if you’re busy, I understand. Happy New Year!

    • Oh, my…I’d forgotten about that. My initial response is: I agree, it’s a clich. And being a writer, I hate clichs. 🙂

      I also understand that you and others don’t see the LGBT lifestyle as a sin, and I can see the point. Whom you choose to have sexual intercourse with is your own business. To put it the way I would to anyone who asks, you stay out of my bedroom, I’ll stay out of yours. I also think that a lot of Christians are obnoxious about how they approach this issue. They act like homosexuality is the only sin ever mentioned in the Bible. But they neglect to remember that (A) it’s not, (B), God does not “rank” sin, and (C), if they’re going to base their entire argument against homosexuality on the Old Testament, then they need to start rethinking their bowl haircuts, polyester, and sleeping with their wives during menstrual cycles. See, that’s in the OT too, but when you bring that up, Christians are like, “But we’re under the new covenant!” Which we are, but the problem is, you cannot pick and choose where that applies.

      There is a blunt statement–or two or three–in the New Testament that homosexuality is wrong. I know that came from St. Paul, not God, but I do believe every writer in the Bible was divinely inspired. I also agree with Paul that to commit homosexuality is to sin against your own body–but then, so is premarital heterosexual sex, having sex with a pet, or having sex with a car. (Yes, I once watched an episode of *My Strange Addiction*where somebody did that). It is my *personal* belief that any intercourse outside heterosexual marriage is sinful, but again, that’s personal. I cannot and will not force you to concur.

      As for “hate the sin” part, let’s put it this way. I have visited women who did drugs, dealt drugs, and committed violent crimes, in prison. I love them. I love and respect you, and you are not an imprisoned criminal. So no, I’m not perfect at this “love the sinner” stuff, but I do try. Blessings to you.

      • Even as a Christian, I came to disagree that the 3 statements in the New Testament that seem to “condemn” homosexuality really have anything relevant to say about it at all. After all, there are different interpretations of the words used, the meaning and the language, and of course cultural context to take into consideration. However, I know many people who have studied these verses equally thoroughly and come to different conclusions, so I can see where you would come away with the opinion you have. I just happen to disagree that it is clear that the Bible condemns homosexual behavior at all.

        Of course, that’s rather a moot point by now as I do not believe in Christianity. There’s too much ugliness and emotional baggage from all of the abuse for me to want to get within 20 feet of a church building. Still, I respect and understand those that do, and I have no problem with people bettering themselves with religion, just as I have learned that I am better without it. I don’t think that there is only one path to being the best person you can be and, if there was, I certainly wouldn’t be arrogant enough to assume I’d found it. All I can do is speak from my own experiences and hopefully bring awareness of them to the world, just as you are doing. All the best to you too!

      • I would defend the church, but the truth is, I can’t. Because the Christian church is run by humans, there is in fact a ton of abuse and ugliness. It makes me so mad, I cannot begin to tell you. And if any of that abuse has been personally directed at you, know you have my sympathies, and if I could get within 50 feet of the people who did it, I would give them a scathing earful.

        I understand where you are on your religious journey. But if you ever change your mind, please ask Jesus to show His true self to you. You’ll find He’s not at all like most messed-up Christians. 🙂 And you can always ask me any questions you have.

      • Yeah, I can’t expect any organization to be perfect. However, it’s not really the abuse that I suffered that caused me to cease being a Christian (although I wish it had because then I wouldn’t have put up with it for nearly as long). Rather, I just realized that most of what I had once believed didn’t make any sense, and I had only held to it for so long because of a complicated web of emotional manipulations that Christians are very adept at using. For example: “don’t question the Bible/Jesus’ divinity/6-day-creation/any other doctrinal point because that indicates your faith is weak, which is the worst insult to a Christian.” Or how about “stop rebelling against your parents/pastor/church! They are your God-given authorities so, even if they are wrong, it is a sin to disobey them.” Or “you are disappointing God by doing this.” Or “if you disagree with me about this, you are not a Christian and/or your salvation is in jeopardy!” And, most of all, “stay in line or you will end up in Hell.” Once I no longer feared all of these manipulations, I could finally question all of the things that did not make sense to me, and I was left with no real reason to believe any of it. The evidence just wasn’t there, for me.

        And I’m not saying this as a person who was wishy-washy with my faith. Nope, I was a super-fundamentalist-faithful-uberChristian (to a rather obnoxious degree, probably). I’ve read my Bible through 3 times and the New Testament more times than I can count (I can still quote vast portions of it) I prayed religiously (lol) I had a “personal relationship with Jesus” which I felt was communicated with me frequently. I had many “spiritual” experiences that I thought confirmed my faith. Being raised Pentacostal, I even had several “speaking in tongues” experiences (which I now believe to be some sort of hysteria brought on by dehydration, fatigue, stress, and the intensity of the situation that I was in with people thronging me, pushing me and yelling in my ear while I shouted myself hoarse praying for God to let me speak in tongues.) I realized that my “spiritual experiences” were probably just emotional highs or lows that I interpreted to be spiritual because of my own confirmation bias. I realized that the Bible was not self-consistent and did not have answers for my questions. I realized that, if I had been raised in any other faith, I would believe it just as fervently as I believed Christianity… meaning that if one faith is more true than the other, I have no way of knowing which one is right. And so, I chose to stop believing in Christianity. This does not mean that I am an atheist. I am sorta interested by the ideas of Universalism, and I like the idea of spirituality. But I will never again assume that I can actually know truth. I can’t.

        It isn’t for lack of trying. I’ve asked Jesus to show his true self to me many times. Sometimes I thought I saw it, but then a chorus of voices would tell me “that’s not God, that’s just your own wishes talking.” And you know what? They’re at least partly right. I CAN’T know if that was really him. Neither can they, no matter how much they claim they do. But asking God to hold my life in his hands just isn’t safe for me anymore. If he exists, he sure has let me down. Entrusting my life to “god” led me to the brink of suicide, caused me to harm myself, and influenced me to allow my family to abuse me. It’s not because god was trying to hurt me. No, rather, it’s because I CANNOT know god, and therefore making my life entirely about him leaves me incredibly vulnerable to bad influences. The Bible is not good enough as a guide because there are millions of ways to view it and interpret it. Pastors and other Christians are no good as guides because they all have a million different ideas as well. So how do I follow god? I have no way of knowing, and leaving myself open to all those other influences has brought me nothing but suffering. I will instead choose to believe what seems right. That’s just where I am.

        Anyway, long response, but I thought you might find it interesting to know why I am where I am. =P Always enjoy talking religion with folks!

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