Please, give me Standard Medical Care

NPR did a story on how disabled people get substandard medical care, because medical professionals simply have no idea how to interact with disabled people.  Of course the story had it’s own bias – see if you can spot it:

What was different about this patient? Was it a dangerous, contagious disease? A mental health problem marked by a violent streak? A history of weekly drunken visits to the ER?

The context was a patent being ignored in the ER by medical personnel who didn’t want the work involved with looking at a person in a wheelchair. Now, I’ll note that people with dangerous diseases, mental illness, and substance abuse also need help in the ER when they come in. People don’t show up just for fun (yes, I know some doctors think people do, but seriously, no, we don’t), even when we’re complicated. When I go to a doctor, I worry that if what I complain about can’t be seen, in black-and-white, on the printout from a lab or on a computer screen, then it’s not real. Oh, it’s real enough. But not to the doctors. It’s in his head, and thus untreatable with real medicine. I’ve seen this with plenty of people I know – their concerns, because they are medically complicated get dismissed as rantings of a crazy person that is just wasting people’s time. It’s amazing what happens when the lab results come back with some actual problem – suddenly, it’s worth treating the person, and the problem has just become real. It’s no longer in their head. I’ve seen several responses to people with autism and other neurological disabilities at the ER and doctors’ offices:

  1. Most common, “you aren’t really sick.” Nevermind you’re complaining about a pain severe enough for you to find a way to drag yourself out of your home, deal with ignorant medical staff, rack up a huge financial bill you can’t afford, and put up with insulting and degrading procedures. You’re not really sick. Only non-disabled people get sick, after all.  You’re disabled.
  2. Related to the above, “Of course, you have .” Everything wrong with you is seen in the light of your disability, and thus untreatable. If it’s a neurological disability, it’s your craziness that is causing this. You’re not screaming because you’re in pain, you’re screaming because you’re batshit nuts (get out the Haldol!). Nevermind it may really be a toothache or menningitis or a UTI – we’re seeing it as crazy.  If you have a physical condition, then it’s all about that physical condition. Can’t feel your fingers? That’s probably because you’re in a wheelchair. No big deal.  Take a Tylenol if it really bothers you.
  3. You’re what? This is the, “Oh, you’re an artist?” in response to telling a doctor or nurse that you are autistic, followed by your explanation, “No, AUTistic, not ARTistic.” Repeat times 10 if you have a speech disability too. I’ve seen this with people who have relatively common medical conditions – “Does that mean you have sex with men and women?” in response to hearing someone is intersexed (yep, that gives great confidence you can care for a complex condition). “I don’t talk” written on a piece of paper (after 10 minutes of getting them to notice the paper) gets the, “So what does that mean?” response. Oh, it also proves you’re crazy unless they can see you have a physical cause for your muteness, like a missing head.
  4. You’re an addict. A lot of us are on a lot of medication, and if that includes pain medication, then that’s the cause of the problem. You see, we’re really druggies seeking more drugs. Nevermind that our doctor has trusted us with Opiates for 20 years and knows we don’t run out before we should and that they help our body. No, we’re saying we hurt because we really want more drugs for our fix, not because we want someone to do something about the unusual pain we have right now. So the last thing you’ll get, if you have chronic pain, in an ER is help with your pain if you have an unusual pain. Every person with chronic pain is looked at as a druggie. Oh, they have no problem putting this in your file based on knowing you for all of 5 minutes. It’s the one thing in your file they’ll actually read next time they ask you to tell them every surgery you’ve had since birth (which you’ve done 20 times in the past at the same hospital).
  5. This one always scares me: “Oh, this is interesting.” It means that this doctor sees herself as someone who can unravel medical mysteries in 5 minutes with no background on my complex medical history. They’ll take 5 minutes with me and decide, “Oh, you’re primary care doctor doesn’t know what they are doing. They are treating your chronic condition using . You really should be on ” Nevermind you’ve tried X, and X doesn’t work or really does make you batshit crazy.

When I go in, I literally pray, “PLEASE let this be something obvious and easy to diagnose.” Because if it’s not, I’m going to get injected with psych drugs I don’t need, have my other medications discontinued in favor of this month’s preferred drug, be told that I don’t really hurt, and have my file annotated with “drug seeking.” Seriously, I’d rather have a heart attack than a severe, but non-life-threatening, pain when I go to the ER. The heart attack they will find quickly and treat effectively – because they can ignore everything I say and still treat it. But they will ignore everything I say if what I say is essential to diagnose the real problem. Just once, I’d like to go to an ER – or have my disabled friends go to an ER – and be believed from the start when we say we hurt and need help.  Just once.

Can You Help Out? A Survey.

At the Association for Autistic Community Conference 2014, I will be giving a presentation on intimacy (in the general sense of relationships, not just the sexual sense) and autistic people, with a particular focus on how abuse survivors can honor themselves and enjoy sharing intimacy with someone else.

This is a huge issue in the autism community, and something I feel pretty passionate about – that we can have great relationships as autistic people, even as autistic survivors of abuse. Abuse is a huge issue for our community – if I meet an autistic person, the sad reality is that they’ve probably faced abuse.

If you’re willing and able to answer a survey about (in fairly general terms) your views towards and general experience with intimacy, I’d love you to help me out by answering the survey. You don’t need to be autistic to answer the survey (in fact, I’m hoping plenty of non-autistic people answer so I can compare experiences during my presentation).  Note that I do ask if you’ve faced abuse (but not the specifics), so please don’t go here if it’s going to be too much for you. The survey is anonymous and the results will be used as part of my presentation.  You can get to the survey by clicking here.

Thanks for your help!

Making the Privileged Feel Better

What kind of things do physically disabled or blind persons need?  It’s simple: access to society.  The specifics are different – the wheelchair user might want to be able to go to school or work without having to literally drag themself up a step.  And the blind person might desire websites that are usable with screen readers.

Of course, these aren’t the only things desired – there’s a lot of inaccessibility in society as a whole that needs to be cleared up.

So, what do social justice minded, but non-physically disabled, non-trans, and non-blind people come up with? We need to worry about our language. We need to avoid saying, “Let’s run out to the store,” because that erases the existence of someone who rolls out to the store. We need to avoid saying, “Did you see that movie?” because that’s abelist and erases the existence of people who experience movies without using sight.

And that sounds good.  It sounds good to say, “Did you experience that movie?” or “Let’s go to the store” rather than the abelist, yet common, alternatives.

Yet, I’m going to cry out and say, “ENOUGH!”  Not because I think these are bad things to think about, but because, too often, what is behind these suggested changes is a bit more sinister than it appears. Sure, it could be a sincere desire to think about others. But where it fails is in actually listening to others.

For instance, my (albeit limited) circle of friends includes a couple of blind people who “watch TV” (their words, not mine), and neither would notice (or care) if the TV picture was present or not.  My wheelchair using friends “run to the store” occasionally, in their words. It’s important to listen to their words.

Sure, there may be people who are blind or physically disabled who dislike words like “see” and “run.”  But most blind or physically use these words exactly like the rest of us: as something other than literally seeing or literally running.  Few non-physically disabled people literally run to the store: we hop in our cars and drive, or, if we don’t drive, walk or use transit.  But little actual running is involved. As for “seeing” TV or  a movie, a better word would likely be “experience” to reflect literally what is going on, but seeing, in context, basically means the same thing.

Now, I recognize I’m privileged, and could be an ablest pig now – and hope that people (particularly people who aren’t privileged in the same way) speak up and let me have it, if they believe it’s appropriate.  I can demonstrate my true character by listening to what is said.  But, at the same time, I do believe I’ve listened to disabled people and that this type of language is not viewed as insulting, as it seems to be used by the vast majority of people for whom it is supposed to be insulting.

It’s also – ironically – appropriated words like look, see, run, walk, etc, which have a general meaning, and made them into words that can be used only when referring to the privileged classes! In essence, privileged people have decided when these words are appropriate or not, rather than allowing the non-privileged people to tell us what they find offensive and how we should respond to that.  That’s both arrogant and dismissive, and the utter opposite of respect.

But it feels good.  It feels good to look at yourself and say, “I’m more progressive and social justice minded, because I know there are wheel chair users in the world, so I avoid using phrases like, ‘take the dog for a walk’ or ‘running to the store.'”  It’s the same old thing that always makes privileged people feel good: being better than someone else (in this case, it’s mostly the other privileged people who aren’t so liberally minded, but it is done by “walking” over the top of the very people for whom this language is supposedly changed for).

I’ve written about this in a different context – the use of the prefix “cis-” to refer to non-trans people.  While I can find some trans people who do feel people should use the cis- prefix to identify themselves, and it’s a lot harder to find wheelchair users or blind people who object to the language such as “run” or “watch”, I find a striking similarity. I don’t like the term cis- because I feel it erases the existence of binary-identified trans people, particularly post-op transsexuals, and their self-identity. But I get shit for that stand. Ironically, I’d say 99% of the people who have a problem with my word choice are binary-identified and passing as – and thus taking the role of – someone with binary, “cis-gender” privilege.

Now, I recognize the social implications and difficulties faced by minorities trying to express upset towards something the majority does.  So I recognize that even if I was being offensive to trans, blind, or physically disabled people (among others), it’s very likely they would say nothing to me about it. Thus it would be wrong to assume that I’m not wronging them. But it would be equally wrong to not listen to the people who are speaking and advocating from a minority group and to find out what their concerns are, rather than simply assuming that I know what their concerns are, and thus can tell people how to treat “those people” with respect.

It’s actually got a lot in common with the “autistic” vs. “person with autism” debate, which comes down to whether or not autistic people get to define their terms and decide what is or isn’t offensive to us (most of us have decided “autistic” is not offensive).  Yet, well-meaning, socially minded people will actually argue with us and tell us we’re wrong – that we should be offended by “autistic” and should be glad to be referred to with the much-more-respectful “person with autism” label. In other words, they know best about our lives and experience.

Well, they don’t.  No matter how good it makes them feel to think they do.

Driver’s Licenses, Autism, Privilege, and Outing

There’s still a lot of discussion, from people I respect, about driver’s licenses, particularly in the State of Virginia, USA.  I’ve already written a bit about this, but I want to talk about why I’m uneasy about most of the opposition.

Most of the discussion around the VA license has to deal with, essentially, branding a person with a permanent label of autistic, which will impact employment, police officer interaction, and other daily life in negative ways.  When pointed out that the law would require 16 year olds to apply for an ID or license, not their parents (unless they are incompetent legally, which most people aren’t, even severely disabled people, at age 16) or others), and it requires the kid’s signature, a lot of the risk seems to be gone.  It’s a voluntary thing – if you feel the risk is severe, don’t apply for a designation of autistic on your license!  Simple!  If you can serve your needs better with “autism information cards,” that’s awesome.  You should do that instead.  But I’m not pleased when people oppose choice because some people may be hurt by making their own choice.

But the inaccuracies aren’t my only concern with the opposition.  I’m equally concerned that people seem to be speaking about – basically – concerns of those who have privilege, ignoring those who don’t.

Many autistic people, like many LGBT people, would never be “pegged” as part of a stereotyped group, if they chose to live their lives acting as a neurotypical (or a straight person).  Of course acting is hard, but some people find it necessary, because of the prejudice against them.  It’s for this reason we have lots of closeted autistics (and LGBT) people.

But not everyone wants to live in the closet. Nor does everyone have the choice of living in the closet. For some people, being their authentic selves, publicly, is either life-saving or simply unavoidable. For these people, a designation on their license is not going to cause prejudice (and may mitigate it by making the person’s public declaration of self and/or unavoidable expression something that can be validated and not attributed to other things).

There’s a lot about employment, and concerns that my employer will see my license. I’ve never shown a driver’s license to any employer. I’ve used passports, birth certificates, social security cards, and the like, but there are plenty of ways to get jobs without an employer seeing a license – and I’ve never been asked to show identification prior to getting a job. That goes for any job I’ve had, from dish washer, to delivery driver, to IT director (I’ve had about 15 jobs in my life).  So, likely, even this is a non-issue, but if people are concerned about it, simply don’t put it on your license!

That said, again, there are plenty of people who will already be seen as autistic by an employer, with or without it being on their license. Preventing them from using this license to show they are autistic won’t do anything to avoid people seeing them as autistic.

But, there’s an even bigger issue: what right do I have to say, “It’s bad for me to put ‘autism’ on my license, so you shouldn’t be able to do it?”  People should live honest, authentic lives. That includes our autism status being known. Now, like LGBT people, we need to consider disclosure carefully. But as advocates we also need to work not only to make sure people who want privacy can continue to enjoy privacy, but we need to make sure that people who want to live authentic, public, autistic lives can do so.

Should a child be allowed to wear a shirt that says he is autistic? Of course. Just as he should be able to wear a shirt that says he is gay. Should he be able to tell people on Facebook or the local newspaper? Of course. And, equally, of course parents also have the responsibility to make some choices for their kids (such as deciding, “No, this isn’t a good forum to speak your diagnosis” for a very young kid, or, equally, this is a good forum). Parents do this every day with autism diagnosis – they decide who to tell and who not to tell.  They also can and should discuss autism disclosure with their children, both the pros and cons of disclosure.

Those are my concerns with the opposition. You may think it’s a bad idea to publicly disclose autistic status. That’s fine. You may even have the choice for you or your children. That’s also fine. But we shouldn’t assume that our own personal risk analysis is the same as someone else’s risk analysis.

We also shouldn’t assume that others have a choice. No, I’m not talking about being forced to put the word “autistic” on your license. I’m talking about being assumed to be autistic, drunk, drugged, crazy, or whatever other label, no matter what a piece of plastic does or doesn’t say.

I do think there are valid reasons why someone might not want the word autistic (or similar) on their government ID. And I support education efforts that don’t take away choice, but empower people to understand and make their own decisions. Would I put it on my license? Probably not. I have the privilege of passing and would probably seek to keep that privilege as often as I can. But I’m not going to assume everyone else has this privilege.

The Evil of Driver’s Licenses

I’m seeing a lot of concern among autistics over a proposed Virginia bill that would allow individuals to add an indication that they are autistic onto their driver’s license and ID card (among other things, like designating an emergency contact – not printed on your license – so that if police find your dead body, they know you want your wife to know). I recognize not everyone has a license, but I’m going to use that term throughout below, so if you have an ID card, just know I know you exist too and the below applies to you too.

There’s some concerns that I’ve seen.  Some are legit.  Most, however, are fear of not what the law does, but what the law could do should something else happen. A lot of these fears are similar to fears about Obama Care (“Death Panels! Rationing!”) – not things that the law actually does, but things people fear could happen. It’s important to be skeptical of claims that the government will harm, just as it’s important to be skeptical of claims the government will help! We need to be careful what conclusions we jump to, and ensure they are based in fact.

So, what does the bill do? That’s simple. In addition to allowing the person (not their parent, not their spouse, not their doctor) to designate an emergency contact voluntarily in the computer records law enforcement can access (this is similar to laws in most other states, and, again, you don’t have to list anyone), you can voluntarily indicate you are autistic and provide proof. You don’t have to volunteer. You can, but you don’t have to.

Here’s the section:

When requested by the applicant, and upon presentation of a signed statement by a licensed physician confirming the applicant’s condition, the Department shall indicate on the applicant’s driver’s license that the applicant (i) is an insulin-dependent diabetic, or (ii) is hearing or speech impaired, or (iii) has an intellectual disability, as defined in § 37.2-100, or autism spectrum disorder, as defined in § 38.2-3418.17.

The new section is iii.  The part about being an insulin-dependent diabetic (probably added in response to police questioning the presence of syringes) or hearing/speech impaired (to explain why the person didn’t respond to police), they are allowing someone to designate themselves as autistic with a doctor’s note (required in a different section) saying they are. Again, you don’t have to say this. If you don’t want it on your license, should you live in VA, and should this law pass, simply don’t ask for it! It won’t show up if you don’t request it to.

Here’s what I’ve seen people say about this law (paraphrased):

  • No autistic adults were consulted about this
  • It’s going to limit employment opportunities for autistics
  • It’s establishing a registry of autistic people, presumably for evil purposes (think Nazi Germany)
  • Police won’t know what to do with a license that says “autistic” and may either discriminate or simply do whatever this was intended to prevent police from doing since they don’t understand autism
  • Take the control of who you disclose to out of your own control
Not a real Virginia license, so don't try stealing her identity!

Not a real Virginia license, so don’t try stealing her identity!

Let me address these.

First, I agree about the first item – if no autistic adults were consulted, this is a bad thing. We should be consulted! There’s plenty of easy-to-find autistic adult groups. Now, I don’t know if autistic adults were consulted or not, but we should have been if we weren’t.

For employment, I don’t think this law will have significant effect. First, most employers don’t require a driver’s license for interviews or applications. I’ve probably applied for 100+ jobs in my life and interviewed at 20 or 30, including delivery jobs. I’ve never been asked for a driver’s license to do so. I have been asked for a driver’s license number, but not the license. I believe this is to show I have a license, although I question why they ask for the number – it’s not useful without additional permission from me to access the drivers’ license history database. But, regardless, the number won’t disclose I’m autistic should I indicate such on the license. I think this is a relatively small issue – sure, if you use the ID after employment to validate your identity (note you can use other forms of ID), then they may know, so, yes, you should consider that when you ask for your license to indicate you are autistic. But the risk is relatively low (yes, it needs to be evaluated, and, again, if you don’t want the risk, don’t put it on your license!).

I’ll also add that, for some people, disclosure of being autistic may help them get a job. I’ll get to this in a minute, but being seen as autistic, by an employer that believes in diversity, is a lot better than being seen as, say, high on drugs. Not everyone has the privilege of passing as a “typical” person, and the wrong label may hurt even more than the right one.

And, finally, for someone who needs employment or other accommodations, having a state-issued document that says, “YES, this person is autistic!” could be very useful – it makes it a lot harder legally for someone to say, “Well, I didn’t have documentation that they were disabled” if it was shown to them. I can see this helping in all sorts of things, from employment accommodations to being questioned about a service animal (which is illegal – the questioning that is – in most cases, but which happens nonetheless and different people may want to have different responses, such as showing documentation rather than arguing or leaving).

As for establishing a registry, again, each person needs to consider that. If you answer the questions about mental conditions on the application for a driver’s license and indicate you are autistic, then, yes, the state knows. That’s independent of whether or not you also request the driver’s license say you are autistic. If you don’t answer that question with information that you are autistic (and I don’t – I don’t believe it has any impact on my ability to drive, which is why they ask; they want to know what impacts my ability to drive, which, for me, is things like my eyesight). Very likely, if you are on medicaid, the State also has your information. So does your school district if you were on an IEP. So does Social Security if you get SSI/SSDI. So does Medicare if you get that. So, while we should be concerned about data collection by government, and the uses of this collection, we should also be realistic that for many autistics, this information is already in their hands, and disclosing on the driver’s license doesn’t do any additional harm – you’re not telling the state something they don’t already know. That said, again, it should be up to the individual. Again, it is.

I’ll get to the police issue in a minute. But I want to address the last bullet point first – that this limits control of information. We do show licenses or ID cards frequently in this society, and, obviously, anyone who sees a license that says you are autistic may see that and now know you are autistic. This is a valid concern and needs to be weighed against any possible benefits from having them know. If you feel the benefits don’t outweigh the problems, don’t have them add it on your license!

Okay, on police, which I suspect is the main reason someone is proposing this. I agree that police need better training – they have no idea how to deal with autism, mental illness, or any number of other things (heck, they don’t generally know how to de-escalate situations). And we do need that training. This bill doesn’t prohibit training. Rather than opposing a bill that says nothing about training, it’s probably better to focus on a bill that would create better training. That’s more likely to actually accomplish the training! Stopping this bill won’t suddenly cause police to be trained.

But here’s the reason why I would support this bill: some people don’t have the privilege of being considered “normal” if autism isn’t disclosed. Too often, these people are assumed to be rude, aggressive, drunk, high on drugs, dangerous, or combative when they are not any of these things. While an officer, employer, or other person might not know what “autism” means regarding these things, at least some – who don’t understand the term autism – will still respond by giving the person the benefit of the doubt, precisely because they know they don’t know (at the risk of sounding Rumsfeldian – see the video below – although I’ll add that Rumsfeld was logically correct, and, sadly, most people were not logically sophisticated enough to get his point).

Even better, this is validated. Maybe it’s not validated well (people can and do forge doctor’s notes, and we can also debate whether or not doctors should be gatekeepers on an autistic label). Maybe doctors shouldn’t do the validation. But doctors are trusted, as is the state DMV, at least by most police. Maybe this is unwise, but it’s the current state of the world. So, when this is on a driver’s license, it’s going to be assumed correct. If I hand the person an autism card, tell the person I’m autistic, or don’t communicate my label at all, the other person may either not believe me (“You are trying to use this as a get-out-of-jail-free card”) or may attribute my motive to something else (“You’re drunk” or “You’re an ass”).

Here’s the example. Let’s say I’m sitting on a bench on a city pedestrian mall, and the local PD comes up to me to find out if I’m (1) in need of assistance and (2) drunk. If I’m in need of assistance, they’ll likely get it for me, but the real point is probably #2 – they want to know if I’m drunk, and, if so, remove me from view of tourists “for my own good.” This has happened to me several times. Now, if I can talk, I can simply say, “I’m fine” and maybe be believed. But something led them to believe I was drunk – they don’t question everyone sitting on that mall! So maybe they believe me, maybe they don’t, particularly if I have a speech issue. I could hand them an autism card (which might not be a bad idea). And maybe they’ll believe it, which would be awesome. Or I could hand them my driver’s license that indicates I’m autistic. Maybe they won’t know what to do with it, maybe they’ll still haul me off to the drunk tank (I’m trying to think of a worse place for an autistic to end up), but maybe, just maybe, they’ll say, “OH! This person might not be drunk.”

Now, is there downsides to having your license say you are autistic? Of course. That’s why it’s important that it be an individual choice. But you don’t create choice by taking away a choice (preventing me from putting my label on my license won’t respect my self-determination!).

I don’t oppose it. I would tell people to think about it carefully. And if unsure, you can decide NOT to request it be added to  your license (shouldn’t take any actual work by you – they only put it on there if you ask for it). You should also be able to get it removed, much like you could decide you want to remove the organ donor status on your license, should you change your mind.

This is not the big evil in the world of autism right now. Now, if you want to talk police training, I’m all for that, and I think we should get moving on that.