Autistics Speaking Day

I want to say something. So here goes: FUCK.A bunch of text, including *(#! #W:# and similar text, to stylistically represent internet cuss word obfuscation

Seriously.

No, I’m not trying to make the blog unsafe for kids (that said, I’d love to meet the kid who hasn’t heard the word “fuck”).  But this is a huge part of what I want to say: we will say things people like.  And things they don’t.

We’ll cuss. We’ll insult people. We’ll talk dirty. We’ll lie. We’ll do all the things that the sanitized, nice, touchy-feely movies about escaping from autism or about how there are geniuses in the autistic population won’t say.

We say – if we’re allowed – these things even if we use speech devices. Too often, we’re silenced by being given devices that don’t speak these words. (hint to parents: if your child uses a speech device that uses a language system – not just spelling, but a word-based language system – and it doesn’t include some words you don’t ever want to hear said, the vocabulary is too small for your kid) Seriously, kids cuss. So should autistic kids. Just like neurotypical kids, we need to learn what is and isn’t appropriate in what context. Whether you like it or not, it is appropriate for two fifth graders to share lists of cuss words with each other. It’s not appropriate to do so in the hearing of an adult. That’s a pretty important social lesson to learn – that your communication needs to change based on audience. How do you learn that if you’re only options in language are always appropriate for the adults?

We say we’re horny. That we’re aroused. That we want to have sex. Maybe even that we want to fuck. Just like a neurotypical does. Sure, there are all types of sexualities among autistic people, including asexuality, but most of us aren’t asexual. So we want these things. And need to talk about it. Yes, there are more and less appropriate places. And, yes, we may or may not have our parents’ moral values. But we need the same rights that any other adult has – the ability to express our sexuality, including expressing it in ways that while legal may not be what our parents would like.

Too often, we live in group homes or institutions where the staff fears the complications that a sex life would bring into their own jobs. Or have religious views about what sex is or isn’t okay. That’s fine if we willingly agree to those rules and have real options and places to live that don’t include those rules. But most of the time, we don’t get that choice when placed into group homes or institutions – we have to take what we get, or run away. A neurotypical might choose to live in a monastery. An autistic shouldn’t be forced to. Yet, studies have shown that many – quite possibly most – group homes ban homosexual relationships while allowing limited (usually way too limited) heterosexual relationships. It’s another place where our desires don’t matter.

We also need to be able to say “NO.” As in, “No, I don’t want to go to work today.” Or “No, I don’t want to eat that slop.” Neurotypicals get to do this. Sure, there are consequences (although often we get away with some of this – how many people use a sick day when they aren’t sick?). Heck, sometimes a neurotypical might wake up in the morning and decide – for better or worse – that going to work sucks, that there is more in life than their job, and that they really don’t want to go to their job. Ever again. Yep, that causes unemployment sometimes, but it’s something many neurotypicals have done sometime in their life. They were allowed to. Sure, there are consequences. But they weren’t prevented from making the choice in the first place.

So I guess that’s my theme: if people want us to speak, you need to let us speak. Even when we say shit you don’t like. We’re not pets, we’re not puppets. We’re human. And that means you won’t like every moral choice we make. Just like I won’t like every moral choice you make. That’s life.

 

An Anniversary

Yesterday was my wife and I’s forth wedding anniversary. It’s been a wonderful time. We have one of many autistic marriages we know of – it’s clear we can form relationships just fine, thank you very much. I also think the basis of our marriage – honesty and communication – would help out a lot of other relationships among people who aren’t necessarily autistic.

I’m also thankful that in the USA, my federal government is recognizing same-sex marriages. That removes some of the taint of unequal treatment of others from my marriage, and thus makes my marriage more beautiful. Others are for the first time experiencing what straight couples have experienced for years – being treated like people.

Yet others still have trouble getting married – group homes deny people the ability to live together, people may live in states our countries that refuse to recognize gay marriage, or there may be any number of any reasons. My wife and I spent some time yesterday thinking of this.

We also spent some time thinking about the people who are single, either through choice or because they have not yet met their future spouse. There’s a ton of discrimination against single people – society assumes we should be married, even when we aren’t (and may or may not want to be). So we also remembered those people.

Our desire should be everyone’s desire: we want to see people happy (obviously without harming others). Whatever that ends up meaning.

Group Homes Refuse to Let Couple Live Together

An AP article, via Denver Post about a married couple denied the ability to live together shows a trend that has been happening for years.

I’ve written about it before: here, here, and here. Disabled people aren’t supposed to be sexy. We gross (some) normal people out. (ironically the same reason gays are in the middle of a fight for their right to marry)

Here’s the essence of the story: two mentally disabled people got married. Her group home (run by Catholic Health Systems of Long Island) doesn’t believe she can consent to sex. His co-ed home (run by Independent Group Home Living) says they aren’t staffed to help them with aspects of their relationship, “sexual or otherwise.”

This isn’t new. As I wrote about before, group homes have for a long time felt the need to regulate intimate behavior in ways that a non-disabled person would consider a violation of human rights.

They get away with it for two reasons. First, is the idea that disabled people need protection from the world. Too often, this manifests as a set of dumb restrictions (such as “married people shouldn’t sleep with each other”) that don’t actually make anyone safe!

Second is the idea that disabled people having sex is gross, perverted, and just plain wrong. It’s the same reaction that a straight guy might have in his gut when he thinks of two gay guys having sex. For lots of people, it’s “icky” to think about having sex with someone with a disability. So, because some people can’t see how someone would enjoy being intimate and sharing life with someone, the target of their prejudice ends up being restricted.

It probably doesn’t help that Catholic Health Systems runs her home, either. The obvious outcome of sex is children – the only thing more scary to some than disabled people having sex is disabled people having kids. And it very well may be that the wife doesn’t want to have kids (she may want them – I really don’t know). But of course no Catholic-run group is going to provide comprehensive sex education, birth control training, or other basic sexual health care and educational programs. It’s supposed to be in God’s hands – well, unless they are disabled and then we’ll stop it.

As for the ability of her to consent, why couldn’t she? You have to do better than “she’s labeled mentally retarded.” Certainly a group home or really anyone else should be helping her if she ends up in a situation she doesn’t want. But she wants this and has asked for it. How much more consent can you get? I suspect it’s really codewords for “if they sleep together they’ll have sex, and then they’ll have a kid and we don’t want that.” And that’s a whole other problem disabled people face – their right to have children is routinely and too-easily challenged, even when they are plenty or more capable than other parents of raising a child (but I’ll add “having kids” doesn’t always follow from “sleeping in the same home”). And, no, I’m not interested in your story about your disabled aunt who couldn’t care for her kids so you took her child (I can give you stories about non-disabled people who can’t raise kids). I know there are people who are unfit parents, but there are also plenty of fit parents out there. And research agrees with me (go look it up yourself, and, yes, people have done a LOT of research on parents with mental retardation).

As for his home, which is arguing “married couples are too tough,” especially “sexually and otherwise” – get over it. You have a co-ed home (and I wouldn’t be surprised if sex and relationships are already happening there – do you not think disabled people seek these things?). Nobody is expecting you to physically assist with sex. Really.

I’m not going to get into too much of this, other than to say it’s a problem I’ve been shouting about to the mountain tops with pretty much no acknowledgement by any disability organization. Nobody wants to touch “people labeled mentally retarded should be able to get married.” When one of them does, they’ll get my support (hint: it’s probably good not to send me fund raising email until you acknowledge all our human rights). But until then, I will keep shouting.

Marriage Equality for Autistic Folk

Today, the US Supreme Court is deciding on whether or not gays have a right to get married. I’m embarrassed that this isn’t self-evident to a country that claims to be based on the idea that there are fundamental freedoms that all people have intrinsically, just for being human. Of course this is hardly the first time that we’ve had problems understanding that.

Of course gays aren’t the only people that have trouble with society and society’s views on marriage.

Autistics are typically viewed by people as uninterested in others (so no need to worry about marriage or dating), non-sexual beings. Heck, there are several sexual orientations in many people’s eyes – straight, gay, bi, disabled. Of course some more progressive people realize physically disabled people (or, rather, some physically disabled people) might be gay, straight, or bi. But mentally disabled people…well, that’s just sick to think of sex.

And of course people can’t think of marriage without thinking of sex.

I have news for people: autistic people like sex! Sure, some of us don’t want to have sex with anyone (just like some non-autistic people don’t want to have sex). But plenty of us do want to have sex. Our sexual desires are no different than any other group. We have people into strange stuff and “normal” stuff and no stuff. Go figure.

I have other news, though: it’s not just sex. I love having intimate physical times with my wife (don’t worry, I’m not going to go TMI) – but that’s a special case for me. I never really desired that with anyone else. You see, the emotional connection I have for my wife brings a level of enjoyment and excitement to the bedroom that nobody else could bring. I suspect plenty of non-autistic people would say the same thing – that there is a component to intimacy that isn’t about physical sex.

Autistic people desire connections with others, too. We don’t want to be lonely (we may want to be alone sometimes, but that’s different from being lonely). Being lonely sucks. Before I met my wife, I still had a need to be with people – I had (and have) deep friendships with people that understand and know me. These friendships aren’t romantic or intimate, like my relationship with my wife, but they are deep and contain a form of love. These relationships give meaning to my life.

Too often, it’s assumed that we don’t want that. We do. We might not want what looks like a typical relationship or friendship, but that doesn’t mean we don’t want a relationship or friendship at all.

This is true not just for those of us adults who can tell you about it. It’s true from the beginning of my memories. I remember before I spoke how I connected and desired the presence of certain people, how I wanted a connection to humanity. That spark isn’t missing from us! Even if we don’t always go the right way about it.

But in addition to being seen as people who aren’t sexual, don’t want/need a relationship, and don’t seek connections with others, there are other problems. We have problems with money and transportation. We have barriers when it comes to group homes and institutions (I’ll note that many of which are run by religious organizations who can legally prohibit same-sex relationships – and nobody, including every single autistic advocacy organization I know of, seems to care). Competency and our own desires are questioned. We have a lot of problems.

Then there is just the practical. How does someone different find someone else in the world? It’s not easy. It’s a wonderful thing when an autistic person finds someone who connects to their soul and heart – but it happens far too infrequently. It’s a huge issue in the lives of many autistic adults, yet very, very few of us had any real education on relationships other than “don’t touch people inappropriately” (or, sadly, “don’t touch people sexually at all”). This one huge area of determining happiness is completely ignored.

It’s funny – social skills are a huge concern to people when they see us and educate us. But what they mean by social skills typically aren’t the same things that we might desire. For instance, what’s the first social skill example used on a sample IEP site? It’s simple “will raise their hand and wait to be called on before talking aloud in group settings 4/5 opportunities to do so.” Sure, this might be important (or not – I don’t know what the last time I raised my hand for permission to speak, but it was quite some time ago), but it is more about meeting other people’s needs than meeting my own.

We need to get past the “don’t touch girls” type of social training. And certainly we need to get past the “don’t make the staff’s job hard” type of training. We need to recognize the desire people have for connections. Yes, I realize everyone is different and that not everyone wants a spouse. That’s fine. But nobody wants to be lonely.

We’re Not a Threat to your Community

Every time a group home asks to be allowed to operate in a neighborhood, there is immediate opposition.  People see group home residents as mentally ill.  They see mentally ill people as violent criminals.  The reality is that only a small percentage of mentally ill people are criminals (just as a small amount of CEOs are unethical….well, I won’t go there, even though nobody is trying to keep CEOs out of their neighborhood).

In San Francisco, an autistic teenage girl was kidnapped and raped over the course of two days after leaving her group home.

This incredibly horrible crime demonstrates – again – that disabled people are typically victims, not perpetrators  of crime.

It also, again, demonstrates that group homes don’t provide 24×7 surveillance of residents as many think they do.  I don’t believe most people need 24×7 surveillance, but a lot of people use the assumed need for 24×7 surveillance by group home residents with the presumed presence of 24×7 surveillance as justification for not funding in-home support (“Having someone there 24×7 in one person’s home would cost too much.”).  nevermind that’s not what happens in the types of institutions (group homes, for instance) that people think should be funded.

I do hope and pray for the recovery of the victim, physically and mentally.  I also hope and pray for justice, and that the victim will not be re-victimized in the criminal justice process.  Note also I disagree with the linked article’s characterization of any 16-year-old as “[having] the mental capacity of a 9-year-old.”  A 16-year-old may perform on one or more diagnostic instruments in a similar way to a typical 9-year-old, but the brain is a bit more complex than a one-dimensional statement would imply.