Coy Matthis – and Excuses to Exclude

I wanted to write a bit about a big local news story. But I also wanted to write about how different populations (in this case, trans people and autistic people) face too many of the same stigmas and excuses when we’re excluded.

As an autistic person, I’ve seen plenty of excuses to exclude. Of course we’re not the only group of people excluded from places and activities, as a long history of exclusion in the USA demonstrates. Today, one group that frequently loses their rights is transgender people. As autistic people, we should be concerned anytime anyone’s rights are infringed – we know what it is like.

Coy Matthis is a (now) second grader. She successfully brought a complaint against the Fountain-Ft. Carson School District (Fountain is a town directly south of Colorado Springs, home of Focus on the Family and several other right-leaning political-religious organizations). Her complaint was that the school district prohibited her, a transgender girl, from using the girl’s bathroom, and suggested (initially) that she used the boy’s bathroom, or, (later) a staff restroom.

Predictably, the Division of Civil Right’s decision (pdf) angered a lot of people, with predictable complaints, as it affirmed Coy’s right to use the girl’s bathroom. As you read through some of the complaints I’ve seen below, as I paraphrase them below, think about what other populations you’ve seen these complaints used against. This is one reason it’s important to ally ourselves with other communities – their struggle is remarkably similar to our struggle, so it’s useful to learn from each other. Of course Coy and others like her have plenty of different struggles than autistic people generally have, but there are some commonalities even where the specifics are different.

I don’t believe she’s really trans, her parents are using her

This argument comes down to “I don’t believe her.” How many times have we heard that about autistic people in the autism community? The minute an autistic speaks out against something someone is saying or doing to autistic people, we learn that we aren’t really autistic. Denial of our identity is a pretty basic way of trying to silence an opponent. And plenty of autistics are told that they are only pretending to be autistic.

But, that aside, I’ll make one suggestion: if you know a 6 year old boy (Coy was 6 at time of the bathroom ban), see if you can get him to wear girl’s clothes to school, tell people he’s a girl, and otherwise do “girl things.” I’ll be mightily impressed if you can do this. After all, society strongly encourages gender stereotype conformity.

How can a 6 year old know she’s trans?

Likewise, we’re (autistics) are too often dismissed when we relate our experiences interacting with the world. “How can you be bothered by a fluorescent light?” It’s basically, “My experience was nothing like yours. I never went through being trans at 6, so I can’t see how that’s possible. I never was bothered to the point of pain by a fluorescent light, so you’re making it up.”

The answer to this question turns out to be pretty easy. From a recent American Academy of Pediatrics (not to be confused with the American Academy of Pediatricians!) policy technical report (pdf) on treating LGBT children:

Awareness of gender identity happens very early in life. Between ages 1 and 2 years, children become conscious of physical differences between the 2 sexes. By age 3, children can identify themselves as a boy or a girl, and, by age 4, gender identity is stable. In middle childhood, gender identification continues to become more firmly established, reflected in children’s interests in playing more exclusively with youngsters of their own gender and also in their interest in acting like, looking like, and having things like their same-sex peers.

Clearly, children know they are boys or girls at a young age. When that knowledge is significantly different than the apparent sex of the body, to the point where the person can’t accept living according to the stereotypes of their body, it’s a serious – potentially life threatening – problem (it can create such unhappiness that people feel suicide is their only way of dealing with this). The solution to this problem is to live as you are, not as people might want you to be. This, in Coy’s case, was confirmed medically through her doctors and therapists. I imagine the “Is she really?” question crossed these experts’ minds. I also imagine they investigated that and got a good answer. Probably a better one than someone without knowledge about gender identity can come up with, particularly without knowing Coy!

Finally, again, ask a random six year old if he’s a boy or girl. Hopefully you’re not surprised that the child provides an answer quickly (well, unless the child may be questioning, in which case it’s very healthy). Children generally know what they are. Really!

Boys have Penises, Girls have Vaginas

We have expectations about “obvious” things. Lots of people have expectations about autistic people – “They don’t talk” or “they couldn’t live without 24×7 help” are two obvious ones (I’ll note that the 24×7 help isn’t something people get even in institutions, but that’s not the point of today’s post, so I’ll move on). It’s another way to say, “NO, you aren’t. You’re what I think you are.”

I’m not sure where Arnold’s kindergartener learned about penises and vaginas, but as the decision by the Division of Civil Rights states, it’s a bit more complex than that. The decision cites the presence of intersexed people as examples of people that don’t conform to the overly simplistic “boys have penises, girls have vaginas.” Enforcing some sort of uniform standard is yet another way of dismissing someone’s identity. “You’re what I think you are. I know better than you. Or your parents. Or your doctors. Or the State of Colorado. Or the US Department of State” (all of the above recognize Coy as a girl). I’m going to pick the sex trait *I* think is important to determine your gender (note that gender and sex are different – I’ll mention that later).

It’s a way of saying, “There can’t possibly be any girl who has a penis, because, well, I say so, that’s how I’m defining girl. No penis.” (Ironically these same people probably would pick a different trait if Coy was ever to have genital reassignment surgery – part of the proof that they aren’t really concerned about genitals nearly as much as making sure they voice their disagreement with the person’s identity) That simplistic, genital-based thinking not aligned with most current research or thinking on gender. Just as someone can believe man-made pollution has no or extremely little impact on climate, you can believe whatever you want about gender. But that doesn’t make you right. With the vast degree of diversity in the human condition, it’s pretty hard to say anything with absolutes, particularly with something as complex as gender. We might all like absolutes (penis = boy, XY = boy, or whatever else), but absolutes just don’t fit the realities of humans. We’re complicated. And trying to make it simple might make you seem smart to yourself, but really exposes your ignorance.

Ah, we’re not discriminating on the basis of gender, we’re discriminating on the basis of sex

Again, autistic people see this type of hair-splitting. We’re told, “We’re not refusing to hire autistic people, we’re refusing to hire people with (insert some autistic trait).”

Likewise, trans people face this as a result of sloppy language used by politicians, lawyers, and the general public.

Quick, if you’re asked if you’re “male or female”, should that question be entitled “sex?” or “gender?” If you said gender, you’re wrong. Gender is identity and/or expression (depending on context). Man, woman, girl, boy are words to describe gender. It’s how you interact with society, which generally doesn’t involve genitals or chromosomes (I don’t ask someone for a genetic test before calling her “Ms” or ask someone to drop their pants before I call them “Sir”). Sex, on the other hand, is biological (and complex!). It’s the combination of traits, such as brain structure, gonads, genitals, secondary sex traits (height, bone structure, muscle structure, fat distribution, breasts, baldness, voice pitch, etc), hormones, and chromosomes – any one of which can point towards a different sex than the others (hence why it is complicated!). So, if you’re interested in a person medically, you may want to know their sex, but if you’re interested in whether you call the person “sir” or “ma’am,” you’re interested in gender (and then you should ask “man or woman” generally, not “male or female”, or better yet, allow the person to fill in the blank in case they don’t identify either way).

Unfortunately for Coy, Colorado, in addition to making transgender a sexual orientation (huh? Trans people are straight, gay, bi, and otherwise – it’s like making transgender a skin color, it makes no sense), confuses sex and gender throughout its laws, to the point where the Civil Rights Division concluded they are synonyms and the meaning has to be discerned through context. Both parties (the school district and Coy’s lawyers) agreed that sex and gender are distinct. But of course our laws are muddy, because legislatures are not quite so clear. Other examples are the Colorado “Change of Sex” form which is used to record a change on Colorado ID cards and driver’s licenses. The State form titled “Change of Sex” doesn’t, outside of the title, ask about the person’s sex. It asks for the person’s gender! Or, the famous, “One man, one woman” standard for marriage. They don’t really mean man or woman (gender), they mean one male, one female (sex). Courts have all agreed that they mean sex, even when they said man and woman (and didn’t define what makes someone a man or a woman) – it was a ban on same-sex, not same-gender marriage.

This is unfortunate because you have statements in law that allow creation of some single-sex (or single-gender, depending on the regulation or law – both terms are used) facilities. For instance, having a “men’s bathroom” is not illegal in Colorado, but the legislature absolutely intended to make it illegal to prohibit trans men from using it (even female men). So, is it sex or gender discrimination to ban a man from the men’s room, when single-sex (or is it single-gender) facilities are allowed?

It turns out that the saving grace for trans people is that the law is otherwise clear – the law was clearly intended to allow trans people to use a bathroom that matches their identity. But there’s going to be a lot of pointless debate in the future due to imprecise language. While advocates might agree that women need to be treated like women on paperwork and in laws, we probably should ensure we don’t muddy the waters by letting laws pass using the word “sex” when “gender” is meant, or vise-versa. The argument could have been avoided with precise language.

The needs of the many outweigh the needs of the few…

Okay, it makes for a good movie. But it makes garbage public policy. This argument was essentially the argument used in every single case of widespread discrimination in the USA. Why were Americans that had Japanese ancestry locked away in interment camps? Because trampling on their rights was seen as an acceptable price to pay for the illusion of security it gave the majority of citizens. It’s today used against autistic people to argue for segregation in school or institutionalization.

This argument used towards trans people implies that use of a bathroom by a trans person (or whatever other right they might have) is somehow interfering with the rights to another. There’s this idea that just being in a bathroom or other place with someone with different genitals is somehow hurting the other person – that it’s an infringement on rights. This is probably only true if you value a “right to discriminate”, which sadly some do value. The only right violated is your right to violate someone else’s right.

Now, I don’t know about you, but I would hope the school would do something about two male boys showing each other their penises in the boy’s room rather than using the room for it’s intended purpose. You go in there to do your business. And by all accounts, that’s exactly what Coy did – her business and nothing more. Now if someone was showing their genitals, you deal with that. It is inappropriate behavior to do that in public restrooms, but it’s equally inappropriate if it is two boys (with penises) doing it. Or two female girls.

And there is a solution for the person who really does feel uncomfortable (no students reported feeling uncomfortable with Coy, it should be noted; it was a couple of school administrators that felt uncomfortable with the idea of Coy using the girl’s room). You let them use a more private facility. Problem solved – now both kids can pee in peace.

She can use the boy’s room…or the staff bathroom, so she can pee

Again, this is used in other areas of discrimination. With autistic people, we’re told that there are other places we can, other activities we can sign up for, etc. We can be somewhere else, just not here. So it’s all cool, right? Of course not.

There’s more to bathrooms than just peeing. While it’s not a place to wave your genitals around in front of others, it has a social component – actually several of them. People do socialize in bathrooms (particularly, from what I hear, women). And, more importantly, bathrooms have a gender confirmation purpose. Some people are violently attacked simply for not following society’s expectations for their presumed sex. Sometimes someone will watch someone use the bathroom, just to determine, “Is that person a man or a woman?” The door they use tells them. If they use a third door, or a door not in conformance with their expression, that confirms, “This person really isn’t a woman, ‘he’ is a man” rather than, “Oh, this person might just be a tall woman.” Someone that already drew a conclusion may not be swayed by this, but for people that were unsure, this can confirm or exclude that a person is dressing and acting appropriately. Equally bad, if people thought the person was a woman, and had no doubt about her being a woman, but she uses the men’s room (or a third bathroom), now she’s obviously and visibly different – and very likely the conclusion will be, “She’s not a real woman.” That’s a risk to her. (it can work the same way for trans men) It’s a risk she should evaluate, not someone else.

Finally, asking any student to do something different just because of who they are (rather than a choice they make), such as using a third bathroom, will say to other students, “This person is different.” Now, difference isn’t bad in itself, but too often that message is communicated too. In this case, the message is, “This person isn’t a real girl.” That contradicts the message the school was properly trying to send when it used feminine pronouns and otherwise treated the girl as a girl.

I don’t think I could ever understand what it is like for someone who has went through pain of being trans, and having a body that didn’t match their being. But I imagine it’s incredibly humiliating and triggering to be told, “No, I think you’re really something else.” A life of people not accepting who you are probably becomes very painful to many. It implies that the trans person is a liar, cheat, fake, evil, sinner, and whatever else. Imagine the pain that it must feel like to have people constantly remind you that they don’t see who you are. Imagine that someone has chosen to live who they really are, not the lie that was killing them, only to be told they are wrong for choosing life over death.

What about safety?

Again, this happens for autistic people. People have stereotypes about what is safe and what isn’t. Someone screaming in a meltdown is “unsafe”, whether or not they intend to do violence. As is someone saying things that an autistic person might to an authority, like, “What you’re doing isn’t safe, it could get you hurt if someone didn’t like what you were doing” (something an autistic person I know did to someone without authority or training who was trying to enforce zoning codes). It feels like a threat, either the meltdown or the concern about a person’s safety. So it must be. Even when it’s not.

Likewise, discussion about bathrooms always comes around to safety. There is an idea that a rapist or molester would never rape or molest someone with the same body parts as themself, and would never enter a place where he or she shouldn’t be – but once you let them in, they’ll now rape or molest. This is problematic for a bunch of reasons, such as assuming that people who have the “wrong” parts would only be in some places to cause problems. But it’s also wrong – we still have extremely strong laws to protect people against rape and molestation. They aren’t always applied or used, but the laws themselves are generally pretty strong and carry severe penalties. If that’s not going to keep someone from doing wrong, no sign on the door will.

Even more significant, however, is who’s safety is seen as important to protect. The idea is that this hypothetical wrong-bathroom-rapist (I know of no case where this has actually happened – where someone raped someone after entering a bathroom and claimed he or she had the right to be in a bathroom because he or she was trans) is a bigger concern than the safety of trans people (who are raped, molested, beat, and killed for using the “wrong” bathroom). The concern wasn’t about making Coy comfortable and safe (part of that is showing that she’s normal and a real girl, not a fake or liar in need of correction). It wasn’t empowering (by letting Coy and her parents make decisions about what is safest for her). No, it was treating people like Coy as the threat – if she uses the bathroom, then people are unsafe because hypothetically someone else might. So the threat needed to be removed.

Likewise, forcing Coy to use a different bathroom doesn’t make her safe either. While a private bathroom may be more safe than a shared bathroom, it can also be less safe. It’s more safe when it’s a non-stigmatizing option that everyone might (and do) use, but it’s less safe when it serves to “out” someone or communicate she isn’t a “real” girl.

If you’re really worried about everyone’s safety, then worry about it (start by giving people privacy in anyplace where they may be partially or fully undressed, privacy even from people with the same sex parts). It means also worrying about rapists that have the same genitals as their victims. Otherwise, it’s just an excuse.

Other Excuses

I’m sure there are other excuses. All of the above were excuses I recall hearing, either in the formal determination by the Civil Rights division, or by commentators about this. The reality is that none of them get to the root of the problem: they are justifications, not the real problem. The real problem is dislike for how someone else lives their life. The excuses are simply attempts to justify bad behavior on the part of the person making them.

Hiring Autistic Employees

It’s all the rage for companies such as SAP to seek out autistic employees for software development or testing positions. But, when I read about this trend, I have mixed feelings. It’s an improvement from the charity model where we’re hired for, in general, only low paying jobs (link via NFB) or to do jobs that only exist as a form of adult day-care.

And I do think autistics can be good software people! I’ve worked in computers since I first started working and I do think my autism makes me a good worker – I think it gives me a different insight into how things work, a different point of view. I think it’s good for employers to recognize that.

So, people being paid good wages for software development or testing is a good thing. That said, I do get a bit nervous anytime a company starts seeking to specifically hire a minority group – often wages are less than the prevailing wage, a charge that has been leveled against the US software industry’s usage of foreign workers on H1B visas. After all, someone might be willing to take a less-than-fair wage if it is either more than they make in their home country or if it is in a location want to be at, but couldn’t normally achieve. In other words, the competitive wage market pays people less if they have a harder time getting employment (after all, not every company is is interested in H1B visa holders). Do you know who else has a harder time getting employment? Oh, yes, autistic people!

Now I’m not saying that SAP or others are paying autistic people less – I really don’t know. But it’s certainly something ASAN and similar organizations should closely monitor. We should not become a cheap form of highly productive labor (albeit cheap for SAP is nothing like cheap for Goodwill). So let’s keep the pressure on to make sure we’re treated right, not as a new low-cost employee class. But this is not the main thing that bothers me with the autistic employment programs.

There are other things that bother me more. First, most of these programs are “trials”. Rather than creating employment situations where employees with disabilities can succeed (often required under today’s laws for all jobs), the companies feel the need to prove that we’re not only productive, but that we’re more productive than other employees. What happens if we’re not? What happens to the autistic person who isn’t? Certainly, we have some extremely talented people in our community. But at the same time, not every autistic is going to be better than the average NT at software testing or any other random job.

That’s the second thing that bothers me. It substitutes the old “we can’t do anything” myth about autistics with one of “but there are geniuses among autistics” idea. While, absolutely, there are geniuses among autistic people, I suspect that we have tons of people who can work but probably won’t quite be considered a genius. They might not have a skill that closely aligns with a highly commercially valuable occupation, like software testing. They may be like anyone else walking down the street. They might be the greatest garbage truck driver in some sanitation company’s employ, but they might also be an average garbage truck driver! That’s not a bad thing – my guess is that most of the sanitation company’s drivers are average – and that’s plenty good to make good money for the company.

So I don’t like the idea we have to be geniuses. We shouldn’t have to be.

I also don’t like the idea that we can employee autistics as software engineers, but positions as garbage truck drivers are ignored.

But, finally, more than the above, I want to see all companies examine their culture and practices to see how they are excluding people from employment for reasons other than job skills. I don’t know if SAP’s internal culture is good or not (I hope it is), but plenty of software companies could expand their doors to women, LBGT people, older people (meaning “older than 25” in some cases!), and, yes, autistic people, by simply getting rid of some of the cultural garbage – as others have written. I imagine other industries could do similar things.

We don’t need companies to seek out autistic people to work. We’re not being denied jobs generally because we’re diagnosed autistic or we have “autist” stamped on our forehead, so we don’t need that targeted. We need the things that keep us from getting work targeted. Why not have jobs for people who have trouble working the 9-to-5 schedule, rather than calling that an “autistic” job (some autistics might need that change, others don’t, and certainly plenty of unemployed non-autistics would work if there was more flexibility in scheduling for positions). We’re being denied jobs because we come across badly in interviews, don’t fit the normal environment, are too much trouble to deal with, or we don’t fit the “culture.” We need the companies we already have, with jobs unfilled, to take a good hard look at their culture and learn to be a bit flexible with everyone. We need companies to quit forcing people into a certain mold (which typically has nothing to do with what they do – what does having a brightly lit office have to do with writing computer code, for instance?) and fight their employees over stupid stuff (like an employee that finds light painful). We need companies to look at their managers and figure out, “Are these people treating our employees good? Even employees that don’t socialize and interact the same way? Even employees that might need an occasional workplace adjustment?” We need companies to quit violating the ADA (in the USA; substitute your local law outside the USA) and other laws, and instead embrace not only the law but also the spirit of the law. We need companies recognizing that not everyone is cut out to work a 40 hour-per-week job, but that person that can work 20 hours is still worth hiring and not just outright excluding.

If you want to make work good for autistic people, and encourage autistic employment, here’s some things to start on:

  • Do you accommodate people who ride public transit and are thus sometimes late? Is your company close to a public transit hub? Do you have accommodations to help me get home if I stay late or work shifts?
  • How about medical care? Does it start on day one? Does it exclude any pre-existing conditions (thank you Obama for fixing most of that)?
  • Once a disabled person starts making money, they often will lose government benefits. If they lose their job, it may be a while before they can convince agencies that they are still in need. How can you reassure the disabled person that the risk of working for your company is worth it, that their life (literally) is not at risk?
  • Can I call in sick because I’m overloaded? Can I go home early for that reason?
  • Speaking of health, what if I’m not perfectly healthy? What if I need more than the typical amount of time-off?
  • How am I going to manage my home, personal needs, and work? A neurotypical person might struggle with this, but an autistic person exhausted from work may go home and straight to bed – without dinner – because of the stress. You might say it’s not your problem, but it is what keeps some of us from working!
  • How about communication and meetings. Is your culture meeting-centric? Can it handle someone that needs space and quiet? Do I really have to go to 6 hours of meetings a day (like many technology people, for instance)?
  • Is it okay for me to skip the company social events? Or do I get pressured to come lest I not be a “team player”
  • What buzzwords are you into? (For software shops, I’ll give a hint: agile isn’t necessarily enjoyable for anyone, but particularly not for many of us)
  • If I complain about noise, light, or smells that don’t bother any other employees, will you believe me and do something about it? Or will you tell me that you don’t have any way of fixing it? What if I end up needing a private office (you know, that mythical thing with a door)?
  • How does your training work? What if I don’t learn the same way that the other 99% of your employees learn? What if I need to you to train differently?
  • If I am getting bullied by coworkers or a boss, will you do anything? Will you do it before I have to go to HR? Will I get penalized when I do go to HR?
  • Do you expect me to do the job just like everyone else, even if one part of the job is something I’m really good at and another part is something I’m really bad at? Or can I be put in the position where I’m doing what I’m good at without failing at the stuff I’m bad at?
  • Can you assign me work in a clear way? If you expect me to use “common sense” meaning “figure out what I should have told you,” I might not do great.
  • If I’m overloaded or provoked, and do something unusual but not dangerous, are you going to react in fear and consider it a safety risk, or are you going to actually figure out what I need to succeed?

I’m sure there are other things. But these things do matter. And, yes, they are complex. It’s hard to do this.

But let’s focus on that. Instead of finding the autistics that fit well into your culture and advertising the “autistic friendly” jobs, let’s find ways to make the culture inclusive of as many people as possible – including the autistics that have the skills and desire to work, but can’t get in the door anywhere. These aren’t the easy-to-hire autistics who can fit into a standard 9-to-5 office environment (sorry, we have an 8-to-5 environment in most places) but also the people that can’t find for all sorts of other reasons – not because the word “autistic” is on their resume, but because they interact differently socially, have sensory differences, don’t typically multitask great, and may have skill patterns with a different set of peaks and valleys than typical employees.

Hopefully SAP and others are doing that (and if so, I am thrilled!). Let’s hold them accountable to make sure.

I’m not doing that

Apparently I’m confrontational. This is to the people who think this.

I’m too abrasive to do effective advocacy.

Too rude.

Too direct.

Too inflexible.

It’s because I say things like, “Autistic people, not non-autistic family members, should be directing the autistic advocacy movement.”

That means exactly what it says. It doesn’t mean that non-autistic parents shouldn’t speak up (or, indeed, speak for their kids at times) for the good of their kids. Nor does it mean any of 1000 other things that people read into it.

But that’s not how people too often hear it. And I’m the one who is supposed to translate my language into something that nobody can take what I left unsaid and make it say something I didn’t say. Something like “parent’s shouldn’t be involved in autistic advocacy” or “non-autistics are bad people” or whatever else I didn’t say.

Sorry. I’m not doing that.

I’m sick of disclaimers. I already have to put too many in place – see the above three paragraphs!

If I say, “people shouldn’t mention lack of services in the same sentence as discussing the murder of an autistic person by their family,” people think I’m saying that lack of services isn’t a legitimate problem. Well, I’m not. And I’m not going to write four paragraphs every time I say something like this to explain that, no, I didn’t say anything about your stress level or ability to get services your child needs.

Sorry, I’m just not doing that.

Nor am I going to pretend that non-autistics that are trying to appropriate my community’s identity are okay. It’s not. There is a difference between someone experiencing autism in themselves and someone experiencing it in someone else. Sure, someone else might have tremendous love and insight – which is awesome and great. And they might say and speak and do great things that help many people. I too will celebrate it. But it’s not your identity. It might be your kid’s, which means you care what happens. That’s fine.

I know there are decent neurotypicals (and, no, neurotypical is not an insult). I shouldn’t need to say that every single fricking time I write something!

I certainly shouldn’t need to go further and constantly gush over the people who do it right. You don’t become an ally so you can be gushed over. It shouldn’t be necessary. If I compliment or acknowledge goodness, that’s a fine thing. But it shouldn’t be required of an autistic person doing advocacy!

I’m asking for my community’s allies to loose a bit of defensiveness and not read everything written by members of the community they are advocating for as if it might be hateful towards them. I’m not hateful of neurotypicals. Nor are most of us (I’m sure someone can find counter examples of hate from autistics, but that’s not the point – I’m not claiming my community is perfect). Heck, I’m one of the first typically to call out an autistic who implies that all neurotypicals are evil or bad or hateful. But by the same token, I should be able to write about discrimination and problems we experience in a world not designed for us without everyone thinking that I’m implying all neurotypicals are bad or evil.

Our ability to speak about our own community should not be dependent upon being good little autistics. It shouldn’t be dependent upon people not seeing any way to take our words wrongly. It certainly shouldn’t be dependent upon people who claim falsely to be allies feeling good about our words. If you’re only our ally when we’re polite and nice and have the right disclaimers, you’re not a good ally!

For those allies that get this, thank you. We do appreciate it.

Gaps in the ADA

Courtesy of the Durango Herald, we know about the plight of a disabled visitor to Durango, Colorado (USA). It highlights one of many gaps in the Americans with Disabilities Act, and shows how different lobbyists ensured loopholes existed in the ADA.

(note that the ADA is a USA law, so what I say here doesn’t apply to other countries)

In the story, you hear that taxi services aren’t required to be accessible (and some pretty disgusting comments from the owner of Durango Transportation, who notes “special needs require special services” after, in the article, explaining that a person using a wheelchair would pay $72 from his company to get to to town from the airport (an able-bodied person would pay $25). It should be noted that an advocate in the town said there was a different side to this and that local transportation companies were unwilling to provide any assistance. Another transportation company, Animas Transportation after mentioning an $85,000 cost for a van with a lift, said, “The additional costs of the liability insurance will make ‘your eyes water’.” which is yet another stereotype of the disabled that typically isn’t based in fact: that we’re a liability and safety risk (perception of higher liability insurance cost is also not a valid reason for discrimination under the ADA – that’s been fought in court).

I’ll note that the ADA prohibits the surcharge as described above, and it certainly does apply to Taxi companies. And while taxi companies are not required to purchase accessible automobiles (sedans), all other new vehicles purchased must be accessible (this link also talks about surcharges being prohibited). Big surprise, though: a business (or two!) that doesn’t think the ADA applies to them. It’s also interesting that transportation businesses aren’t expected to make their transportation accessible in many cases (buy used vehicles or stick to just buying sedans), but another business who isn’t a transportation company, such as a hotel, is required to be fully accessible if they provide a shuttle service. I have a hard time believing that a hotel faces less of a financial hardship to equip their shuttle van with appropriate lifts (or providing equivalent service) but a taxi company is unable to do the same – particularly since these same taxi companies may be contracted by private businesses to operate shuttle services (so you would think it would make good financial sense, if you want private contracts, to have at least one accessible vehicle!).

As an aside, kudos should go to Doubletree Hotels for having an accessible shuttle (as required by the ADA for a hotel shuttle – unlike taxis, hotels don’t get any exceptions for accessibility in their shuttle service) – apparently the only one in Durango. Unfortunately the man wasn’t going to the Doubletree. But it’s nice to see Doubletree is willing to sell their product to both non-disabled and disabled people, and comply with the law, since sadly many businesses are not. It should also be noted that the Durango and Silverton Narrow Gauge Railway managed to make their historical steam-driven train and facilities accessible, something that taxi services can’t manage to do.

Just what isn’t covered by the ADA, as far as public access? It turns out a lot. But we start with the two main categories of exceptions from Title III:

  • Private Clubs (basically anyone who can also exclude someone on the basis of race)
  • Religious Organizations

For physical accessibility, however, there are additional exceptions (this is in addition to the numerous exceptions in the design standards that say things like a toll road can build completely physically inaccessible tollbooths and then, because now a wheelchair user can’t access them, not hire people who use a wheelchair even if the user could otherwise do the job well):

  • Taxi service automobiles (sedans, not vans)
  • Houses (builders can build a 5,000 house subdivision without making even one house in the subdivision accessible, unless they have a sales office in a model home, in which case that one home must be at least partially physically accessible)
  • Air and rail transportation (these are covered by other laws)
  • Anything a State historical society decides couldn’t be modified
  • Apartment buildings in most cases
  • Homeowners associations in most cases
  • Most multi-story office buildings with less than 3,000 square feet per floor (physical access to space is not required)

I’ll also note there are many other exceptions, such as movie theater captioning (they don’t have to do that).

The ADA is a good law (and does apply to the Durango taxi services!), but it’s still has gaps that we need to continue to work to close. We aren’t done yet.

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.