The Americans with Disabilities Act is 21 today....but I'm the one who could use a drink.
On the one hand, yay ADA. No, seriously, I am incredibly happy that it exists, and not just because it's been what I do for a living for a while. Life in the US is better for people with disabilities as a result of this law, and I like most of the changes that have been made to the ADA in the past few years.
On the other hand, I am SO frustrated with what hasn't happened. Or what's happening that shouldn't be. Not that people with disabilities are the only people who haven't yet beaten the discrimination video game by any stretch, but ableism (or disableism, as they call it outside of the US), is what tends to hit me in the face on a daily basis.
Let's start with my brief surprise that there are so few ADA-related posts in my stream on this particular anniversary. And then I realized that Google products, including Google+, have never ever EVER treated accessibility as anything more than an afterthought, and then only when the disability community yells and screams about it. At which point Google looks vaguely sheepish about it, handwaves for a while, and, um, thingy. Lots of people I know, like and respect work for Google, but the organization as a whole sees accessibility as a barnacle, at best. And yeah, I know about that one awesome guy who works on accessibility. He's an awesome guy. How many people work for Google, again? So yeah. The reason I'm not seeing much about the ADA anniversary on here is because the people who are the most affected by it aren't on here - because when you get right down to it, Google as a company doesn't give a shit if we can use their stuff or not.
That's fairly minor, though. Today I read on boston.com
that an advocacy group here in Massachusetts filed a lawsuit against MassHealth (our Medicaid program) because people with disabilities had LOST THEIR HEALTH COVERAGE due to MassHealth refusing to provide them notices or communications in effective formats. They telephoned deaf folks and sent print letters to blind folks and refused to provide any other type of communication when requested to do so. Because as a blind person, it is my responsibility to trot over to a friend or neighbor or housemate or family member and have them read my private medical information to me. NO WAIT, IT'S NOT. If you don't have to wave your itemized medical bills in front of your entire town so they can tell you how much you owe for your latest chlamydia test (for example), neither do I. It has been over two decades since this law was passed, and Deaf people are still being refused the right to informed consent, women with mobility disabilities are getting overdoses of chemotherapy because doctors can't figure out how the hell to weigh them, and I can't get hospital ERs to give me discharge instructions I can actually read. People can die of this stuff. They probably do.
In less life-threatening news, people still try to kick me out of restaurants, stores, cabs, hotels, and various other places for having a guide dog. My dog gives me more confidence and independence than I have ever had, and I'm not giving her up just because other people don't know the law. Can you imagine if a restaurant didn't know a health code for 21 years? They'd be shut down. People would boycott them. The press would have a fit. Yes, people's health is at stake if a health code is violated, but segregation and discrimination are hardly minor issues. Let's just boil it down to this: most people don't think twice about the assumption that they can go into a business and spend their money and the business will thank them and ask them to return. I don't assume that I can make it past the front door, much less prove to the business that my money is green. But the law that says I can turned 21 today.
I am very comfortable with my disability, and I make no apologies about my choice to use a guide dog. But the world in which I live isn't particularly comfortable with either thing, and the more self-possessed I am, the more of a threat that is. I don't have words to explain the effect that years of rejection, hostility and entitlement have on a person. I take cabs when I'm tired or sick or cold or hot or wet or late, but no matter what condition I'm in, I always have to make sure that I have enough energy to steel myself for the fight that might happen if a taxi driver becomes furious at my gall at thinking that I can get in his vehicle as if I were a paying customer (which I am). That cringe in my gut when I walk into a restaurant and wait to see if I'll be served or treated as an intruder - I don't have a name for it, but I can tell you that as an abuse survivor, it feels eerily familiar. One of my best friends has a theory that people with disabilities are always in a state of PTSD, except we never reach the "post-" part of post-traumatic stress disorder, because we keep being re-traumatized. At first I thought she was being melodramatic. But then I started making note of my own reactions to ableism's death by a thousand paper cuts, the attempts to appease, the emotional dissociation, the humiliation, the examination of what I could have done differently, as if I were the problem. And I don't think it's just me. I think my friend is right. I think we never get to process through these things, because they keep happening every day.
My mom, who is my biggest advocate and who taught me to stand up for myself (hi, Mom!), worries when I get angry about these things. I mean, she gets angry too, but she reminds me that I may be the only blind person someone has met, and they will form impressions based on their interactions with me. (She is entirely consistent in this outlook; she gets equally nervous when a famous Jewish person screws up). And it's true, people do generalize. But I have never met a sighted person who worried about their interactions with me because I might think poorly of sighted people. Frankly, I have the sense to know that some sighted people are assholes and some sighted people are fantastic. So do most blind people I know. So the assumption here is that I have to cater to the folks who don't have that level of common sense; in fact, I have to assume they don't have it. I don't think that's respectful or authentic. It does not grant the person without a disability the respect due a thinking person, and it does not respect my genuine anger and frustration over a problem for which I am not responsible.
A lot of you have heard this story already, but about six weeks before the ADA was signed, I applied for a job as a camp counselor (I was 16). My interview went swimmingly. I know this because the person interviewing me told me so, but then said that my blindness was "disconcerting", and that she didn't think she could hire me, because she was concerned that I couldn't look after children. (Let's not even get into the implications there for blind parents). Fortunately, she quit before any hiring decisions were made, the camp hired me, and I got perfect scores on my evaluations. But I would have had no rights at the time, and I have them now, at least in theory. Except that just last year, a blind couple in Missouri had the first eight weeks of their daughter's life stolen from them because the hospital staff panicked over OMG TWO BLIND PARENTS and the state took the kid away. After a bunch of advocacy agencies jumped in, the state gave the kid back. But seriously, how does this shit still happen?
So yes. The law is there and important and I'm grateful for it. I just wish people were smart enough to shut up and follow it. And even if they do, I still can't wrap my brain around the fact that my civil rights have an "undue burden" clause, and that even when no one is approaching that threshold, there is an incredible amount of backlash against people with disabilities for expecting to have rights at all. And no law will fix that. The law is skin deep, but that kind of privilege goes clear to the bone.