Stereotypes and Advocacy

I’m sick of many of us in advocacy simply stereotyping people who are not part of our particular movement. Stereotypes and assumptions prevent us from communicating. Too often, rather than listening to what someone who is not one of us says, we simply assume that they believe what other people with a certain trait believe.

Parents, professionals, and therapists deserve to be treated with respect. As all people do.

Sure, a lot of time the people doing horrible things to autistics are parents, professionals, and therapists. So they don’t get a free pass just because they had a kid or have a professional job.  But, at the same time, before we pronounce someone guilty, we probably should make sure they really are guilty – not with accusatory questions, but by sincerely listening.

We don’t want to be tone policed in advocacy circles. If I need to express something happening to my people that is harming them, I shouldn’t be silenced unless I can say things politely. I agree with this.

That said, if I can say them politely, I probably should. I should at least try a decent interaction with people, with an assumption that the person may be a potential ally, not an enemy, who simply doesn’t know any better, who is doing something a certain way for a reason that negates my concern, or simply doesn’t know any better – but agrees that autistic people (or whatever other group) need to be treated decently. If they prove themselves otherwise, fine, be an ass. But let’s wait until they prove it, rather than having us assume it. There may be nuance that I don’t know about unless I ask.

I’ve had this in my own advocacy. Sometimes I see something in the advocacy world that I don’t think is particularly effective advocacy – so I speak up and say so. I try to do so respectfully, sometimes I do, sometimes I fail. Like all of us. But more often then not, the response isn’t to read my words or listen to my thoughts, getting clarifications when something is unclear. No, it’s to read one thing and then dismiss everything I’m about to say, on the basis of what stereotypes about people who say that one thing think.

I’ve seen this in my arguments against the widespread usage of the word “cis-” to refer to people who are not trans (ex: cis-male is a person born with normal male genitals and treated as a boy/man throughout his life, and who identifies with that identity). The initial assumption is that my actions are formed by the same ignorance and arrogance that causes some to fight against the word – but my thoughts are quite a bit more nuanced than that. But it’s hard for me to express them, because the initial assumption is that I’m full of shit and saying this for the same reason they’ve seen others say this (and there is a lot of bullshit on the web about what is wrong with the cis- prefix, bullshit that is horrible and wrong and definitely anti-trans).

Yet, I make an argument like that, and people make assumptions, without really listening to what I want to say. And, often, these people are advocates for some cause. I probably agree with them far more than I disagree, but they immediately put me in the category of “hateful, anti-trans bigot”, assuming that I hold a bunch of other views (on things other than cis- prefixes) that I don’t hold, because I hold a view on the cis- prefix that is contrary to some of the louder advocacy right now (that said, I’m not the only person that holds this view for the reasons I hold it).

I’ve seen it in other areas of advocacy too. People are fine making assumptions about you if you don’t say exactly the right words, exactly the right way. I might say I don’t support food stamps, which is an accurate statement of my beliefs (for people outside the USA, food stamps aren’t stamps anymore, but are assistance given by the government that can only be used to buy food). Immediately, I can sense my readership getting angry, about to tell me a few pieces of their mind. Some people stopped reading and declared me a conservative asshole. Others assume that I must never have been without food, because if I had been, I could never say something like this. A lot of stereotypes.

Of course when I say I don’t support food stamps, I’m talking something else entirely. I agree with economists that food stamps are a wasteful, inefficient redistribution of income that doesn’t help the economy as much as it could, which doesn’t get people out of poverty, and which is inefficient for the person needing assistance. Oh, again, I’m in the conservative asshole category in the eyes of my readers! I also agree with the most progressive anti-poverty activists (who, ironically agree with the economists!) in that cash distribution is a much better way of helping poor people than earmarked funds are. Rather than giving a family $400 of food assistance, $600 of rent assistance, $350 of medical assistance, $200 of transportation assistance, why not give them the cash for these things? Maybe they can economically eat for less than $400 (I couldn’t if I had a family, but some people have resources I don’t have or abilities I lack). But to get that better job, they need $250 in transportation assistance. Why shouldn’t the people most connected with their needs make that decision? (hint on why people disagree with me: “What if they buy $1000 of lottery tickets?” And that’s a legitimate concern – what if someone runs out of money in the beginning of the month? We can’t let their kids starve. And I agree with that – I won’t get into details now, but there are solutions for that too that don’t involve kids starving; but that said, contrary to what most people seem think, most poor people aren’t poor because they are too stupid to spend their money on food and rent, but rather they are poor because they don’t have enough money – and will spend money they have wisely).  So my view isn’t “Cut support” but rather “Put people in charge of determining what they need, rather than us dictating.” This isn’t even a fringe view – most people who study this field (poverty) would agree with me, including people in government. But it is opposed from the right wing (“ABUSE!!! THINK OF THE ABUSE!!!”) and from other advocates who only read “get rid of food stamps” and immediately make some assumptions. So it probably will never happen.

When we listen to a parent speak, we need to be careful to not make any assumptions. Maybe the parent is an awful curebie who wants sympathy at any cost to their child’s privacy, so is fine posting exaggerated stories about shit smearing on their mommy blog. There certainly are plenty of parents in this category. But maybe they are talking about what they are talking about in a respectful, appropriate way that respects the child’s privacy.  Maybe the child is old enough to understand the implications of consent and has given it, but the mother didn’t know that she was going to be stereotyped as a “mother who wants sympathy” and thus needed to make it clear she didn’t fit the stereotype. But we should be listening, and asking non-accusatory questions, giving people not the benefit of the doubt, but simply recognizing “I don’t know here, but it’s important.”

Now, a good ally won’t be bothered by someone confronting them over a stereotype the self-advocate has about the group the ally is part of. Even if it’s done somewhat aggressively and rudely. They’ll recognize that a minority community has to put up with a lot of shit, and sometimes that is expressed in direct, up-front ways. They’ll see where the pain and anger is coming from. Or maybe the ally is wrong, and does need to be corrected, and is willing to be corrected (if they are an ally, they will listen; note that I don’t believe an ally to autistics has to agree with any one autistic on anything, either – and that’s where things get complicated and messy).

But at the same time, I think sometimes we get a bit too aggressive in our advocacy, seeing enemies that aren’t there. Advocacy is very nuanced much of the time, and not about just the big major things. It’s not just about whether JRC is giving electric shocks to their prisoners (they are, and, yes, it’s wrong). It’s about an assumption that “more intensive” treatment is the right answer for “more severe” behavior. And that “more intensive” treatment works better and quicker for all types of behavior than less intensive. It’s the assumption that the more effort put into therapy, the more positive results. It’s the assumption that behavior X and Y are maladjusted and need therapy. Sometimes they do, but sometimes that “behavior” is just odd but okay.

I’ve also seen the reverse – I’ve seen it assumed that an autistic who speaks on advocacy is anti-parent, angry, and even militant. I’ve had all these things used against me, and while I can’t speak for their accuracy in an unbiased way, I work very hard at channeling my anger appropriately and recognizing the importance of good parents. I certainly don’t see “parents” as the enemy, nor am I trying to wage a war. I’m trying to help people understand and trying to make sure my people can fully participate in and enjoy society – nothing more. So this isn’t exactly a one-way set of stereotypes.

So, when you hear something you disagree with today, I’ll give my thought on what your response should be: Consider whether there may be nuances you aren’t aware of. When someone says they want to get rid of food stamps, are they saying, “I want the poor to starve” or are they saying, “I think the poor know where this money should go better than I do?” When a parent says their 18 year old son wears a diaper, is it possible their 18 year old son has agreed to share that for a shared advocacy reason? Let’s not assume that’s not the case. No, I’m not saying to assume it is the case either. But we should listen and ask true questions, not just jump to accusations.

What’s Wrong with Advanced Directives

Do you want to cut health care costs in America?  It’s simple – you could save substantial money by doing one thing. You encourage people to create advance directives for what they would like to happen if they are unable to speak for themselves in the hospital.

For instance, someone might say they don’t want CPR, don’t want a ventilator, don’t want procedures that are painful and only prolong life by months, don’t want procedures that would save their life but leave them disabled.

In fact, they do. They say exactly these things when asked – at least a lot of people do. People want to “die with dignity.”

Here’s where I have the problem: If the decisions are made with informed consent and out of personal desire, I’m generally fine with this. But I don’t think most of these decisions are made with consent.

I was recently listening to a Planet Money podcast on this – listen to the actual story, as this isn’t in the article, if you want to hear what I’m concerned about.  Basically, this town has a remarkably high number of people who have completed advance directives, something I agree most people should do, but do carefully.

The problem comes with two things. First, as the show points out, this saves money, by not keeping people alive with expensive procedures who indicated they don’t want to stay alive in those situations. This can be ethically neutral, unless the person thinks, “I want to leave my life savings to my kids, so I don’t want the hospital using all of my money on me. In other words, I worry about people making a financial decision on whether they should live, and I have a huge objection to someone dying who might want to live on the basis of finances. Directives in favor of discontinuing care are scary when there is finances involved. This certainly could be solved through funding healthcare properly, so that it’s not a concern. In other words my heirs shouldn’t have less money because I told the doctors to do everything they can for me.

The second problem was when one man in the story was asked about situations and his choice – situations like whether he would want to have life saving surgery that would leave him blind or leave him unable to walk. In both cases, the man, likely sincerely, said, “No, I don’t want those surgeries.” Now, this is hypothetical and this probably wasn’t a real possibility for the man, but it is scary. What was he basing this decision on? I don’t know what he does and doesn’t know about disability, but if he’s like most people in the USA, disability is terrifying to him – there is probably few things worse than being “confined to a wheelchair” or being blind. To people with those disabilities, these disabilities need to keep anyone from leading a full and exciting life that they enjoy. But chances are he doesn’t know many people in a wheelchair or blind. Even more concerning was that the question wasn’t, “You’re going to die shortly and be blind if this surgery happens, and probably be in a lot of pain. Do you want to die painlessly in that situation?” That’s probably the question the guy thought he was answering (that said, I could be wrong, and hope I am).  He answered that he didn’t want those surgeries – even if he would live another 60 years without any other problem from the surgery) – because the question just asked if he wanted these types of procedures that could leave him with a disability for the sake of curing illness. In other words, this wasn’t exactly an end of life question, even though he probably thought it was.

And that’s where I have the problem. I don’t like people making decisions about their death on the basis of biases against disability. I hate it for a bunch of reasons. I hate it because I wonder whether or not this man would make this decision if his wife was disabled and he knew better what disability is like. Or if he was presented this information in another way. Equally, I’m scared about how disabled people are viewed by him, and if these prejudices are shared by other people – like people in hospitals. Do they see a disabled person and do a calculation, “This person is suffering more and would probably prefer death?” There’s evidence that this does happen. Routinely.

I do think people should fill out advance directives and let their families know what they want for medical treatment, if they are unable to speak. I believe very fully in this. But only with consent and without the financial motivation to choose death.
I have a good life. So do my blind friends, my wheelchair using friends, and, indeed, “even” my friends with chronic pain. Learn about us before you decide a life like ours isn’t worth living.