Thursday, May 23, 2013

Things Not to Say to any PWD Whether They're Using A Wheelchair or Not

I read this post about things not to say to a wheelchair user and I thought "a lot of these could easily apply to anyone with a disability", some of them have to be slightly altered but they definitely apply. I'm going to copy a couple of them because, well, they're just that damn appropriate (or I guess inappropriate in this case), but there are a few of my own here too. Similar phrases have been combined.

1. "What happened to you?" Especially when disabilities are visible, people will be curious, and that's fine, but don't act like you have a right to know everything about me and my disabilities after knowing me for all of a few minutes. If you want to know, be polite about it, and remember that it's not small talk for most of us. Also, if you ask someone who doesn't want to talk about it, respect that too.

2. "Is your significant other disabled too?" If you just met me, and I just said something about my girlfriend, that's likely the extent of what you'll hear about her. Asking a PWD if their significant other is also a PWD is like asking anyone at all if their mate is the same race or even what their sexual orientation is. We aren't excluded from "to each his/her own" just because we're disabled, even though there are people who think they can decide everything for us, regardless of our age, but that's a whole other matter.

3. "Good for you"/"You're amazing", etc. If you're calling me, or any of us "amazing" because we do something well "considering the circumstances", don't do it, just don't. All we're doing is living our lives to the best of our ability.

4. "Can I ask you a personal question?" We know what's coming next if we do give you permission to ask the personal question, and it's none of your business. If you do ask the question that I have in mind, you'll never hear the answer from me, and you'll never have a chance to find out in other ways, even if you want to. People have their preferences, we are not excluded from this just because we have disabilities, and we sure as hell don't have to be open books.

5. "You're not disabled/you don't look disabled". I've heard this a lot, and it drives me nuts. I've been living with two disabilities for my entire life and another chronic pain problem for the past two years. Don't tell me I'm not disabled, ever. It is never up to you to tell me when to "play it up" and when not to.

6. "Can't shouldn't be in your vocabulary". It can, it should, and it will be in mine. Everybody has limits, regardless of their ability or optimism levels. When I say I can't do something and you dispute that, you are insulting my intelligence, you are disrespecting me. Don't try it.

7. "Don't be such a freeloader"/ "you owe me". If you even attempt to believe that anybody with a disability doesn't want to be independent, you're sadly mistaken. Unfortunately, in many cases, the family of the disabled person is more guilty of this than anyone else. We all get discriminated against in the job market and most of us "aren't disabled enough" to collect anything from the government. Everything in the world costs money, and we have the same needs anyone else does. So many of us don't exactly have a choice in this matter. In some cases the lack of a choice is temporary, in other cases it's more permanent. We don't owe anyone for accommodating us. That's along the same vein as "you owe me for raising you". We're not in debt to family, friends, or society in general for anything. If any relationship is based on money, somebody's disability is the least of the problems.

8. "Don't like something? Change it." We don't have the option like most people do. We can't just "get up and do something". Sometimes we literally can't move due to lack of energy or the presence of extreme pain, other times it's an accessibility issue. If "changing it" involves transportation, transportation is expensive for me because I'm too far from a public bus to walk there and the service I have is overpriced. Access is different in different places, sometimes the "get out there and do something" option is simply not there. "If things get bad enough, you will" doesn't help your cause either, because the fact that something really needs to happen doesn't change that it might be impossible due to any number of factors including finances and accessibility.

9. "Act your age." We're often trying to do just that and, among many things, some of the other phrases on this list keep us from doing it. It's very hard for me to act my age when somebody is telling me where I can go, and when I can go there. Acting like $20 is a lot of money works for an 8-year-old but I haven't been 8 in almost 20 years, don't try it on me. Telling me who I can and can't see doesn't help my cause or yours, and neither does thanking someone for being my friend. It's hard for me to "act my age" when there's somebody hovering over me telling me exactly how to live.

10. "Let me help you."/"I hate watching you struggle"- These are often said while something is being taken out of our hands, literally. If we need help, we will ask. Please do not force your help on us, demean us for not accepting it, or even demean us when we do ask for help.

The list that inspired this post only gave 10 examples, but after reading all these,  some of you may be thinking that I don't have respect for a lot of people, but I really do, I respect people who respect me. That brings me to add a bonus item to my list:

11, "Change your attitude". Part of the explanation for this one goes along with #5, partially (and unfortunately) thanks to Scott Hamilton. His quote, "the only disability is a bad attitude" has been splattered all over the web with images of people with disabilities doing normal things. It's just wrong to assume that there are no limits and then to say that attitude is the only limitation. When you have a disability, you're often (if not always) expected to be the "happy, grateful cripple". We won't be happy all the time, we're human. We won't be grateful for things that make us feel nothing more than human.

Feel free to add via comments, but remember, I'm going for general things here that fit the title.

Friday, May 17, 2013

"He Didn't Let His Disability Get In The Way"

When people say someone doesn't let their disability get in the way, it's nothing more than a backhanded compliment. Disabilities do get in the way and that will never change. When you praise me or anyone else for this, you're complimenting us for ignoring part of ourselves. Occasionally there will be a PWD who decides to train for and run a marathon, or do the Tough Mudder course, or some other potentially high-risk activity. If they do, congratulate them, but DON'T add anything like "considering the circumstances" or "for someone like you", etc. If I accomplish something and add a qualifier like that of my own free will, that's fine, but don't do it for me, I can speak for myself. Don't try to make my accomplishment less valid. Also, don't begin to think that if one PWD can do it, we all can. You will often, but not always find out that those of us who do things like this are limited in other aspects of life. We may have the occasional need to attempt to surpass our own limits, but if we aim to prove anything to anyone, it's to ourselves and no one else. Don't ask me to prove my disability doesn't affect me; instead, listen to me when I tell you how it does affect me and take it for the fact that it is. Proving truth in something I know to be a lie is impossible. When somebody asks you about your own abilities and you tell them what you can and can't do, you aren't asked to prove it, but for some reason I am, we all are.

I heard somebody on TV say "he didn't let his disability get in the way", and when I heard that, I thought of two comparisons immediately, but one of them sounded mean so I went with the other. It's a fact of life with a disability, it WILL get in the way. It's not weakness when it does. That's like somebody saying they didn't let their job get in the way of their life. There will be a time when anyone with a job will have to say "I can't do that today, I have to work." Nobody thinks twice when they hear that. They won't ask if you're avoiding them. If they ask you to play hookie, they'd better be joking. On the other hand, if I say I can't do something for disability reasons, the questions don't stop. "Have you even tried?" "Are you sure you can't do that?" Perhaps the worst part is that those italicized words always bring a condescending tone. Sometimes I don't need to try, I can just watch someone else do something and plainly see that it won't bode well for me. The main difference between the job scenario and disability life is that it's ill-advised to quit your job, but it's impossible to quit having a disability. Yes, this is my disability "getting in the way", and there are only so many adaptations I can make. There's only so much we can do, and that limit is different for everyone.

Disability-related problems are never one-sided though. The other side of this one is when we do try not to let our disabilities get in the way, and someone sees that they do. The response that follows is usually something like "I can't stand watching you struggle, just ask for help". I will ask for help, but please don't forcefully provide it before I ask; feel free to offer but don't insist. It might also do you well to understand that when I do ask for help, it's often because my disability is getting in the way. That is definitely not the time to tell me not to let my disability affect me; that basically equates to throwing my disability in my face. Standing back and providing encouragement doesn't qualify as help either. "You can do it" won't help anyone of any ability level, except maybe with self-esteem. Thanks for believing in me, but I'm asking for your help because I need it.

It's impossible to live up both ends of a double-standard. If you want to offer help, do it just the same way you would for somebody without disabilities. Don't react harshly to me accepting or denying your help. Disabilities get in the way, so don't make me or anyone else feel like less of a person when they do. Do us all a favor, when disabilities get in the way, please, let them, and let us let them get in the way. Maybe we're trying to learn new skills. If help is needed, believe me, most of us will ask for it. There is a very fine line between me trying not to let my own disability get to me and you watching me "struggle". It is a fine line, but it's just as easy to know when you're close to crossing it; all you have to do is ask me and respect my answer.

Monday, May 13, 2013

Do People Just "Deal With" Me?

On Sunday, Mothers' Day, I went to visit a long-time family friend and former teacher. She is a retired special education teacher who has basically become a second mom to me (hence, the Mothers' Day visit). At one point during the visit, she showed me a gift she bought for her friend's three-year-old autistic daughter. The gift was a hat that read "Autism Awareness" and had interlocking puzzle pieces on it, similar to this one, but not exactly the same.

This led to a bit of an argument between us. I know Autism Speaks "supports the families" of autistic people much more than they support the autistic individuals, and I explained this to her. Her response to this was that the family needs the money to "deal with" the autistic child(ren). I'm paraphrasing her, except for the quoted phrase, which honestly bugged the hell out of me.

I'm not autistic, but I am a cripple. I can understand assisting the family, especially financially, only until the autistic individual or other PWD reaches an age that for others without disabilities would be considered "adulthood" or "maturity". During the argument, I suggested age sixteen, but that seems very random when every case is different. To explain it a bit, I suggested sixteen because that is when the average non-disabled teen would start driving, and when their parents would likely say "if you want to drive, get a job." A teen getting a job implies they have to be trusted with the money they earn. My friend's response to trusting a sixteen-year-old autistic individual with their own finances was essentially that these individuals may not be able to manage their money well enough, which may or may not be true depending on the individual. However, it took everything I had at this point to keep myself from screaming "THEN LET THEM FAIL!". To be clear, I don't want autistic people to fail at being independent, but you have to open up to the possibility of failure to give them a chance to be independent.

She argued that "some autistic people can't speak". Just because they are nonverbal doesn't mean they can't communicate. There's a huge difference there. I was surprised by the fact that a former special education teacher does not know about AAC devices and text-to-speech programs.  In the past two years or so, I've seen stories about some very successful nonverbal autistics "finding communication". Carly Fleischmann has been featured in the news explaining how she's been able to express her thoughts clearly with the help of technology. I've also just finished watching Wretches & Jabberers which I will defer to their own website to summarize.

I'm 27, and I still live with my mom because I've been having trouble finding work partially due to my disability and partially due to my location and other factors. I have cerebral palsy and I've been diagnosed with osteoarthritis, and I don't currently receive any financial "benefits" Apart from college tuition assistance which went directly to the university and three months of Social Security Survivor's benefits after my father passed away when I was 18, I haven't received any financial help. When I have applied for federal or state government assistance, I've been denied with the exception of Medicaid, but that's not directly financial. The survivor's benefit totaled about $4000, and my mother took two-thirds of it from me. I wasn't the best at saving what remained in my hands, but there are reasons for this. First, I was 18 years old and was just handed $1300. Secondly, I would be going away to college soon and would be "free" for the first time in my life, and that was cause for celebration for me. I failed, just as I say young autistic adults should have the opportunity to do. This amount of money wasn't enough for me to jump and decide to live on my own, but it wasn't exactly pocket change either. That was a lesson for me, and the only one I needed. I failed, but I was allowed to fail at a young enough age where I had a safety net. If you don't trust somebody with money until they're 30, they might fail and end up living on the street. If I would receive any sort of financial "benefit" in the future, I need it to be in my name and FOR ME. I say that because there is a constant air of "you owe me for taking care of you" around me. If that money went to my mother to "help the family", as Autism Speaks does, it would perpetuate the situation I'm in physically and mentally, as well as perpetuating the idea that I will never be an adult because I don't have my own money.

You cannot teach the value of a dollar at any age by handing someone a $5 bill and saying "spend it wisely". $5 won't get you much of anything today. The only way to teach somebody how to be independent with money is to put all the money in their hands, not to give the money to the family to help them "deal with" their "child". I realize that parents of children with any disability need assistance to support their child(ren), but it should never be up to the parents or up to a third-party organization to determine when a child isn't a child anymore. This is why the thought of owing my mother for "dealing with me" sickens me. I haven't had the resources to be independent yet, but when they come to me, they will come to ME, and that's the way it has to be. I've started to wonder whether almost everyone in any aspect of my life is just "dealing with me". A few people, including my girlfriend and a couple close friends have told me explicitly that they aren't just "dealing with me", but it seems everyone else is, and I need to become independent to break that cycle. Autistic people need that independence, too, and taking financial support away from me or any of them is counterproductive. If society would allow people with disabilities to be independent, maybe nobody would be "dealing with" us anymore and they can start respecting all of us as individuals.

Wednesday, May 1, 2013

Having Disabilities is a Full-Time Job

Apparently the fact that I have disabilities is enough to make the world believe I'm a magician. The words "disability" and "disappear" may begin with the same four letters, but that should be where the list of connections ends; unfortunately, it isn't nearly the end. People tell me all the time to hide my disabilities, but my cerebral palsy, vision impairment, osteoarthritis, and adjustment disorder are things that I cannot hide. If I try to hide them, and they "appear", I would undoubtedly have trouble explaining exactly what is happening to me in the heat of a moment like that. These same people also seem to think that "receiving" my bachelor's degree has made my options limitless. As a side note, I did more than "receive" my degree, I EARNED it, and even that may be an understatement; I had to fight for it. The assumption that I have no limits could not be further from the truth. They all forget, conveniently or not, that my disabilities are still with me and always will be. I can work through the adjustment disorder, but the others will never go away.

I wonder how long it will (or more likely won't) be before the next person wants me to make my disabilities disappear. At the same time, I wonder how long it will be before people realize that disabilities do not have off switches. I also wonder when people will ask me to act like a crippled old man again. If I apply for a job, I always hear "don't tell them about your disability" but if I apply for government assistance of any type, I get told to "play it up". It definitely does not work that way. If I would choose to hide my disabilities from a potential employer, I could get denied accommodations that I may desperately need. The other extreme is probably more detrimental to me. If I would "play up" my disabilities to the government to get what they call "benefits", I could possibly be arrested for either fraud or perjury. Nothing is worth putting a felony on my record. If I'm not willing to take a felony charge myself, you have no chance of getting me to do that for your benefit.

Maybe that would explain why things like Social Security are called "benefits", anybody in the applicant's life tries to benefit without doing anything. Yes, if they're employed, they pay into this system, but maybe that's why it's a benefit to them. To me, it would be a life changer, a shot at independence, and ironically, a shot at getting off that system and into the working world. I just happen to live in an area that has nothing to offer me. I need the means to move to find a job, but I need a job or financial assistance to get that. Government assistance is called assistance for a reason, and truthfully, assistance is what I need. My goal is to work a full-time job, but without an opportunity, that will never happen. Stay-at-home moms say that's a full-time job, and it is, as is being a college student. Having a disability is a full-time job too, but it's like slave labor, it's not volunteer work but it doesn't pay. I can already hear you saying "it doesn't pay? then what's the disability benefit?" Stop using the word "benefit", for one thing. It's not a benefit, it's a lifeline. Secondly, this is a 168 hour per week job without holidays. That's right, My disabilities don't clock out. My disabilities don't give me a day off, ever. If they don't give ME a day off, you damn sure don't get a day to tell me how I'm affected. You don't get to tell me when I'm normal, when I'm me, or when I'm a complete cripple. I'm the one that tells you, the government, or a potential employer what my limits are today, tomorrow, or any day until I'm dead. That's right, I said "limits". My options are not limitless, even with my degree in hand. My disabilities don't shift gears and become more or less severe when somebody wants them to, not even when I'm that somebody. They shift gears on their own, and there is no neutral. The only reverse involves me saying "I'm in too much pain" and backing up into my bed. Three of my four disabilities are incurable, and people acting like I can be cured overnight makes me incorrigible. Everybody in my life needs to know I have disabilities, and the only person who should be using these disabilities to judge me is...well....a judge, the social security appeals judge. I don't judge myself based on my disabilities and I'm the one who sets that example, or I would be setting the example if people actually followed it. It's such a struggle to get the critics to follow it. I've graduated college, I'm done being graded, but I'm not done with being disabled, and I'll never be done with that.

I don't have the benefit of tailoring the levels of my disabilities to fit the situation, and you don't either. If I don't have to address you as "your honor" the appeal hearing, you don't have the authority to judge how disabled I am. I'm not lazy, I have limits. Education doesn't make the limits disappear. The only things that can possibly make my disabilities easier for everyone to handle are proper accessibility and acceptance. Of course, it's most important that things are easier for me, or for any other person out there who has disabilities. Another aspect of acceptance is accepting that I'm the authority on my own life. Don't set expectations for me. I don't care to meet them, and I don't care if you're disappointed. All I'm out to do is live and enjoy my own life my way, and my way doesn't involve denying who I am. Being who I am doesn't involve being Supercripple or a poster child either. We are not here to make things easier for everyone else and we aren't asking for "too easy". All I'm asking for is accept me for who I am and keep the playing field level. Real acceptance is shown, not just spoken. I may not have control over accessibility issues. I will try to make people accept me for who I am, but I can only try so hard. I just hope one of those people who accepts me has a business behind them and can offer me the opportunity that I need. Of course, the ultimate goal is not just to get these opportunities and acceptance for myself, but to do that for everyone out there who has a disability. Having a disability is a full-time job, but it shouldn't keep me or anyone like me from getting a real full-time job and living a full life.