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.