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.

It’s Complicated…No Shiny Boxes

Shiny boxes don’t fit real people. We’re way too complex for that. It’s a point I often make about autistic people: we don’t fit boxes well. It turns out that autistics aren’t the only ones who don’t fit in boxes. In honor of National Coming Out Day last week, I’m posting a video that sums up a lot of academic ideas about sex, gender, attraction, behavior, and gender roles all in a few minutes.

There are tons of LGBT people in the autistic community (I suspect a far larger percentage than in the non-autistic population). Plenty of autistics don’t fit the stereotypical idea of a man or a woman. I’ll give a hint: just like an autistic person may intelligent but not speak, or may have sensory issues but not communication issues, there’s a lot to human sex and gender, and the different pieces are not necessarily related to each other. It’s bad to make assumptions about an autistic’s abilities. And it’s bad to make assumptions related to sex, gender, attraction, and behavior.

Enough of my writing – this person explains it much better:

Barriers to Relationships, Part 4

This is a forth (and final!) post in a series of four posts on barriers to relationships. Check out Part 1, Part 2, and Part 3. This series has been focusing on difficulties forming and maintaining romantic relationships imposed on autistic people not because of their autism, but rather because of abuse, financial policy, transportation, and other support services.

This article talks about sex and similar topics.  Personally, I don’t see any stigma with using the word masturbate or intercourse or whatever else.  Sex isn’t dirty.  It’s something most of the population does or wants to do (yes, I know there are completely asexual people too, and that’s fine too – that doesn’t make sex dirty though).  I also mix talking about sex and marriage below, but what I say applies to other aspects of romantic relationships.  It just so happens that these are the areas of biggest hangups in the eyes of non-disabled people when discussing romance and people with disabilities. Continue reading

Barriers to Relationships, Part 3

Previously in this series, I talked about how abuse and finances affect our ability to form romantic relationships, completely unrelated to any social differences caused by our autism.  There are two other areas I want to discuss – transportation and daily living assistance in today’s post, and, in the last post, the idea that we aren’t romantic or sexual beings – and that may be the cause of a lot of these issues.

Our living environments and daily living supports – the very things that are supposed to allow us to take part in the community (assuming we’re outside of a locked institution, which is another significant issue when we’re not) are barriers to our participation in the community.

The first problem with services was alluded to in part 2 of this series, when I talked about living accommodations not always allowing a boyfriend or girlfriend from “benefiting” from someone else’s subsidized living situation.  With housing, even getting married in some cases will not allow the spouses to legally live with each other in a house that one spouse owns (at least owns in the same sense as most other American’s “own” their home: with their mortgage).  But it extends beyond housing.

For instance, if someone needs a personal attendant to cook and shop, what happens when they want that personal attendant to cook and shop for them and their girlfriend, for a special meal?  I suspect many personal attendants would so so without concern, but I also suspect most people’s funding sources for their attendants don’t recognize “feed the girlfriend during a special meal” as something intended to be funded.  Yet why shouldn’t a disabled man be able to have a special home-cooked meal with his girlfriend at home?  Isn’t this part of being in the community (in this case, a small, intimate community)?

Transportation is equally an issue.  “Visiting the girlfriend for an evening” is not a task that is typically funded.  Sure, going to work, school, therapy, or medical appointments is acceptable – that’s what is funded.  For many disabled people in the US, some form of public transit is their primary transit.  Assuming that their house is well served by local bus service (transit agencies don’t need to offer accessible transit if someone doesn’t live near a bus stop), their significant other better also live near a bus stop!  And, not only that, it better be served by local buses during the hours that the disabled rider would like to visit (transit agencies also don’t need to provide accessible transit outside of the hours they serve the local bus stops).  Of course the local transit agency typically plans stops and schedules for ridership numbers – that means commuters are well served, but someone visiting from one suburb to another late on a Saturday night is not a significant concern for the transit agency to plan routes to accommodate these needs.

Sure, there’s taxis.  But going back to someone on SSI making slightly more than $8,000 a year, a $40 taxi ride is asking a lot (in fact, 20 of those rides and the person has used 10% of their entire yearly income).

A lot of the problems above come down to funding and our society’s desire to prevent “freeloading” even when such measures keep people from living their lives fully.  That also speaks to the value of disabled people’s’ lives in the eyes of society.  It’s more important to ensure nobody claims disability benefits who isn’t disabled than it is to ensure that a disabled person can have a life!

Yet if I’m disabled and have staff to help me with daily living, it should be for my full daily living.  I’m not asking for special rights or any of that nonsense – I’m asking for us to have the right to take our S.O. home for a nice meal and movie.  I’m asking for the right to visit our S.O. in her home, even if it takes place after the commuters have already returned home.

Sadly, I see a lot of the battle for funding based only on what is necessary for education, work, health care, and therapy.  Nobody seems to actually care about personal relationships – despite the fact that most people would rate their personal relationships as the most important things in their lives.  Our relationships just aren’t worth as much I suppose.