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.