Thursday, February 28, 2013

Every time I see an Autism Speaks commercial, a little piece of my head explodes

(Originally posted on my tumblr account on April 9, 2012)

I am not autistic, but as a PWD, I see the commercials and the complete avoidance of the people (most often children) who are actually autistic. Most notable is the Tommy Hilfiger ad, where he says “I’m Tommy Hilfiger, and my family is affected by autism.”

He doesn’t even mention which member of his family is autistic like the others do. If they wanted to advertise and actually acknowledge the autistic people, they should let them star in the commercials (or at least give the opportunity to do so). If they completely reversed their strategy, they might be a slightly better organization. Of course, the true solution is to fund research more than these ridiculous commercials, the organization might be more credible that way. What they need to do is get someone like this “nameless” autistic member of Hilfiger’s family to star in the commercial….let them communicate “I am autistic and this is how it affects me: …”(I’m choosing not to be specific here because I don’t want to mislead or offend anyone). Only after they have done that should they even consider having a famous person jump in and tell you who they are and that it’s their child ACTUALLY IN THE COMMERCIAL.

I’m not autistic, as I said, but avoidance of PWDs and the whole “focus on the family” idea just drive me insane. Focusing on families means giving the parents and caregivers the aid that should actually be directly in the hands of the PWDs who need it. Focusing on the families means giving those parents and caregivers the opportunity to control and abuse us. It’s more than opportunity though, it’s somewhere between an opportunity and a command. All disability-related organizations need to realize that donating to the families will not help us, it will kill us. If the money, equipment, or services are in the hands of the PWDs, it will make independence more possible for us. If you donate to organizations like Autism Speaks, all you’re essentially doing is making yourself feel good while perpetuating many negative stereotypes, including the one that says PWDs can’t be independent.

Tuesday, February 26, 2013

Both Teams Win? Not So Much

There's a video going around of a teen with an intellectual disability scoring a basket in his high school basketball game. His name is Mitchell Marcus, and he had served as the team's manager for most of the season. The coach decided to put Mitchell in to play near the end of the team's last game. There are so many problems with this, but it really comes down to one thing, Marcus is just trying to live life to the best of his own ability. He's not here to inspire anyone. The coach, however, does not understand this. In his interview, the coach said he was prepared to lose the game "for his moment." Their team won, but not before a player on the opposing team blatantly passed the ball to Marcus so he could make a basket. That's not basketball. That's not how you play sports. You play to help your own team win.

When Marcus was interviewed, he (apparently) said he was just happy to wear the uniform, even though that came from the mouth of the reporter, not Marcus himself. That should be true of any athlete at any level. If you're not proud to wear the uniform you are wearing, you either stop playing, or in the professional ranks, request a trade. In any case, they called these events "sportsmanship". This is not sportsmanship, this is patronizing. Was Mitchell Marcus happy to play in the game? He was. Was he happy to score the basket? Again, it's fairly obvious he was. Did anybody bother to ask him about HOW he scored that basket? Not at all. Any other player on any other team would be disappointed in themselves missing so many opportunities before that shot, and it's fair to assume that he is no different. That's right, I said it, he is no different. He joined the team, albeit as the manager, to be a member of the team, and probably to make some friends. If he is aware that he would have trouble keeping up with the competition, he wouldn't want to play just to be left in everyone's dust. Would people applaud him for knowing his own limits? I don't think so, but they shouldn't. Nobody asked him about his opponent who blatantly ignored basic basketball strategy. You don't want to pass the ball to an opponent. No exceptions. If he has the basketball knowledge the coach referred to, he would know how patronizing it would be to have these events unfold as they did and to be the unwitting center of it all. I have no doubt that Mitchell Marcus was happy, but I also have no doubt that he was not intending to inspire anyone. He was just trying to be a normal teen, be involved in his favorite sport (even if he couldn't play), and make a few friends, and there is nothing wrong with that. What's "wrong" with the situation is all the TV cameras and the opposing player doing what he did. I wonder whether or not this video would have gone viral if any one factor changed. If Marcus was not disabled, the opposing player is immediately ostracized. If he had made one of the shots he took under normal basketball circumstances, is this "news"?

It's almost as if the news story isn't about Mitchell Marcus at all....until people want to say how inspiring he is. The story is about all the well-intentioned, yet misguided people around him who literally set the stage for him. They all want to show how "nice" they're being to the disabled kid. They want the glory of being kind people, but when disabled people see this, it has the opposite effect. If you want to be kind to anybody who has any sort of disability, don't patronize them like this. Don't act as if "in his mind, the championship is on the line" when in reality it's not, and don't act like that staged basket won this "championship."

There was a similar situation back in 2006 which involved an autistic high school senior named Jason McElwain. His story gained nationwide notoriety when it aired on ESPN, and some things were still taken too far. Some media outlets even labeled him as a "high functioning" autistic which is problematic on another level that I won't discuss here. However, in McElwain's case, he scored all his baskets during the regular course of the game and under normal circumstances. He scored twenty points in four minutes on the court, including 6 three-pointers.  A streak like that will reach the media even if the player has no disabilities. He made himself newsworthy by playing well, not by other people setting him up, and not for simply living life to the best of his ability while having a disability.

People without disabilities aren't in the news for daily activities at any age, so why is Mitchell Marcus' story different? It's different because people want to make a big deal about being "nice" to someone who has a disability. It's different because people are wrongfully inspired by things like this. It's different because the majority of people don't see how patronizing it is. Nobody wants to acknowledge that this should not be different at all. That is, nobody without disabilities wants to acknowledge this. The disability community would like to see "news" like this disappear, and I agree with this sentiment. We are not here to inspire anyone except ourselves. We don't want fame and glory for living our lives, and especially not for staged acts of kindness and "sportsmanship". Nobody should be exalted for respecting us. Even the opposing player who threw Marcus the ball said "I was raised to treat others how you want to be treated". This is not how to do that, unless he wants to be inspiring in the way that the disability community abhors. We're not inspirational people, we're just people, and we deserve respect just like everyone else does.

Saturday, February 2, 2013

I'm 26, and I'm Tired Too...

Inspired by/response to I'm Tired, by Robert A. Hall, mistakenly attributed to Bill Cosby. 

I'm tired too. I have cerebral palsy and chronic pain caused by osteoarthritis. I just received my college degree after eight years of fighting with the university. I've been trying for at least the last four years to find work without so much as a callback for an interview. I'm tired of the cycle of "I can't get work because I have no experience, and I can't get experience because I can't get work." I'm tired of people calling me lazy for it. I'm tired of being denied benefits because people without disabilities tell me that I am not disabled either, especially after living my entire life and having my disability affect me several times a day.

I'm tired of disability benefits being called "benefits". It's not a benefit, it's a necessity for people like me (and I can't get it). I'm tired of people telling me what I can and cannot do, or what I should and should not do. Everybody says "just go get a job", but if it was that easy, none of this would be an issue. I'm tired of hearing that going to college means I'm not disabled. I'm tired of people telling me I'm attempting to take advantage of the system that was put in place for people like me. I'm tired of being denied government help, tired of lawyers telling me I have no case against the government. I'm tired of dealing with employment agencies that only exist because discrimination is constant, even though the government and these agencies will never admit it. I'm tired of getting criticized for not responding to people fast enough, tired of calling people to make sure they are doing their jobs, and tired of being an option for these people when society makes them a necessity for me. 

I'm tired of people coming to me to complain about their jobs when I don't have one. I don't mean everyone, if you're being harassed or if working conditions are subpar, those complaints are valid, but "I hate working 9 to 5" will draw nothing more than "give me your job, I need it" out of me. I'm tired of hearing about the bad state of the economy when people like this have jobs. I'm tired of people questioning a work ethic that I haven't even had the opportunity to show. "Make an effort", "be more motivated", "change your attitude", I'm sick of all this. I'm tired of people telling me to contribute to society when I can't even get out on my own. 

I'm tired of people telling me when I'm disabled and when I'm not. Maybe things like Medicaid and Social Security payments are called "benefits" because it's become obvious that people take advantage of them. I'm tired of people who reach for their Medicaid card and have an iPhone fall out of their pocket; people seem to think I'd use the payments the same way, but there is zero chance of that. I'm tired of people determining my needs based on my family's income. People need to stop believing I can be treated like a child my whole life, I'm already too old for that. 

I'm tired of telling people all this stuff, tired of them not understanding me and THEN criticizing me. I'm tired, but as long as people lump me in with those who deserve the criticism, I can't give up. Now I'm just tired too, I have to stop here and hope the message is clear.