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.

Too Big to Fail

Apparently, in the autism world, there’s a concept of “too big to fail.”

Autism Speaks, apparently, is too big to fail.

Autistic self-advocates and our allies have been speaking very loudly, nearly unanimously (like anything, we won’t all agree, but we almost all agree on this) that Autism Speaks is doing more harm than good in the autism world. Autism Speaks promotes an agenda that speaks to fear and prejudice, affirming that fear and prejudice among supporters and volunteers. It speaks to the first thing that goes through a parent’s mind when they hear their child is autistic: “The world’s ended. Your child has been stolen. You won’t have a life. You’re marriage will fall. You really should have built that bomb shelter.” Okay, maybe not the last one, but they absolutely echo that message – despite plenty of parents disagreeing with it (and a large reason for these feelings is the fear and prejudice that Autism Speaks promotes).  But don’t take my word for it – search for “What is wrong with Autism Speaks” and you’ll get plenty of others who feel like I do. I’ll give one link here, from Emma’s Hope Book: What is Wrong with Autism Speaks. But I’m going to assume that most readers of this blog either just did a bit of Googling or read Emma’s link (or any number of other links out there that say the same thing).

So, we’ve been boycotting Autism Speaks and seeking to let their sponsors know we don’t like money going to an organization that makes our life difficult.

In the midst of this, we hear people dismayed that we would not seek to engage and work with Autism Speaks. Well, let me start by saying: we tried. Seriously. Many, many of us tried to engage with Autism Speaks. They do not want autistic people to have a seat at their table, except for a PR role. We’re good for publicity and fundraising, but not actually for coming up with thoughts about what would make our lives better.

But, ignoring that (and this effort continues – should Autism Speaks seek to engage in a meaningful way with autistic people, I’m sure they will have no shortage of ways to engage), there are two main reasons people say we should “engage” and not protest. First, they say “Autism Speaks does good things too.” Typically, they’ll mention local chapters that somehow do something good. Second, they’ll say, “Autism Speaks is the largest, best funded Autism organization and could do a lot of good if they could be pointed in the right direction.”

I’m not going to discuss the first right now, other than saying that while Autism Speaks does occasionally do something good, they do a heck of a lot more bad.

As for the second reason, it’s essentially, “Autism Speaks is big.” Yes, we know that. Of course they are – they are well funded, and spend almost all their resources to grow. Not through helping people, or even research (yes they spend money on research, and, no, autistic people do not oppose research; however, they spend more on salaries and marketing). I’ll add that I’m not comfortable supporting a research organization that can’t understand their own research – but my point is not about research. It’s this idea that if we don’t support this big organization, we won’t have any voice at all.

Let me start by saying that having Autism Speaks not speak would not hurt me or others at all. Nor would it hurt the vast majority of autistic people. In fact, it would allow other organizations that do understand research, that do understand autism, that do care about prejudice and groundless fear, to speak out.

Might doesn’t make right.

Nor is Autism Speaks likely to change course anytime soon. I hope that our efforts to get their attention by letting their sponsors know that donating to Autism Speaks is anything but non-controversial has an impact. I hope Autism does change course. But right now they aren’t doing anything that helps autistic people. Seriously.

A big oil terminal. Exxon-Mobil De-Kastri Terminal (public domain, by russian.dissident via Wikimedia Commons)

A big oil terminal. Exxon-Mobil De-Kastri Terminal (public domain, by russian.dissident via Wikimedia Commons)

We might as well volunteer and donate money to Exxon. After all, Exxon is big. Way bigger than Autism Speaks. And if Exxon wanted to help autistic people, they could do a wonderful job of it with the resources they have. Sure, if you sent a $100 check to Exxon, they probably wouldn’t actually use that to help autistic people. But neither does Autism Speaks. And that’s the point.

If you want to support an organization that encourages discrimination and fear of a minority population, go ahead and mail your check to Autism Speaks for Christmas. But I can suggest a lot of better uses for your money. The first one that comes to mind is ASAN, the Autistic Self-Advocacy Network. Go read about them. They could do a lot of good with your money.

But don’t just give to Autism Speaks. And don’t you dare tell me that I should support them because they are big.

Why I’m Proud of my Community (including our allies!)

This week has been good and bad.

A major autism organization started this off by posting a really horrible essay (the comments are actually good on this one, though – another thing that makes me proud of my community) about their policy summit. Besides for other horrible stuff in the essay (we’ll get to that), the actual summit will apparently consist of a bunch of people chosen by Autism Speaks to tell government “what autism says.” One group is absent though: autistic people. Our voice isn’t important to the group that claims to tell people what autism says.

Immediately, several autistic-run organizations sprang into action. I was thrilled to see an organization I’m part of, Association for Autistic Community, quickly decide, YES, this is something we need to speak out about. We joined with ASAN, an autistic-run group that is extremely effective in advocating for the well-being of autistic people, in issuing a joint statement about what Autism Speaks has done.  But we weren’t the only ones to make a statement: Autism Women’s Network made a statement of their own.

Then, we saw a powerful advocate organize a protest of the Summit. From all accounts, it was a successful protest.

See that? In the span of about 48 hours, we’ve (autistic people, that is) issued formal statements and organized a successful protest against an event. But, uh, sure, we’re not qualified to sit at the table for discussions about what to do about the problem of our existence put on by an organization claiming to understand something intrinsic to our being.

I’m proud that our community did this.

But that’s not all we did. Many, many autistic bloggers wrote about the event. Here’s just a few:

Of course some of us did a bit more digging. Lydia discovered that Judge Rotenberg Center was one of the featured exhibitors at the Washington DC Autism Speaks Autism Walk (edit: I thought it was an upcoming walk, but it was a past walk). Lest you don’t know about JRC, you can watch the below horrific video used in a trial against them:

Again, this video is very disturbing, only click if you can handle that. In the video, a kid is shocked for refusing to remove his coat.

Ironically, Autism Speaks previously issued a statement against the use of shock by JRC. Now, they featured them as a resource to parents at their most well-known event, their autism walk. Disturbing indeed. For what it’s worth, the trial ended in a settlement. I’m proud our community stands up to this and continues to fight – and publicized the support given by Autism Speaks to the only school in the USA to use electric shock to discipline students (and, yes, other students get students that had problems in other programs, a common refrain used by people to justify awful behavior).

This morning, another surprise event – John Elder Robison, one of the only (if not the only) autistic voices on an Autism Speaks advisory panel, resigned. He wasn’t the only one. A mom, invited by Autism Speaks, who personally knew Suzanne Wright (one of the founders), spoke out about the hate as well in one of the most powerful pieces written this week.

But this wasn’t all – our other allies have been here too. Parents are fed up with being told that their kid is a horrible, diseased, terrible, a drain on society, and destroying their families. And they’ve shown themselves to be the allies we (and their children need) – and very much in disagreement that they aren’t “living” but merely existing (as, apparently, a family with an autistic family member exists, and doesn’t live, according to Autism Speaks). They’ve all written brilliant texts that show their main worry about Autism Speaks isn’t political gain, but rather the well-being of their child. Autism Speaks hurts their children.

 

(edit: I also came across this after I made the initial post) And then there’s people like Spaz Girl who aren’t parents of autistic or autistics but might be classified as “just an ally” (there is no such thing as “just an ally” – you all are very important). She wrote This is the Week that Autism Speaks Meets its Downfall.

(edit: added to the original post) Special education professionals also are speaking up! Tim wrote, “The Best Argument Against Autism Speaks: A Special Educator’s Perspective.”

(edit: also after I made the initial post) Even the Autism Society of America (historically hostile to autistic people, but this organization has seen tremendous change in the last few years) has made a statement.

I am proud of my community. I’m proud of these allies. I’m proud that there are people in my community who get it. Who understand that slick advertising isn’t enough, that there actually has to be some substance behind saying you care about autistic people.

I’m so damn proud. We don’t need Autism Speaks to speak for us. Thank God.

Autistics Speaking Day

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

Seriously.

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

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

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

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

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

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

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

 

Some Insights from Autcom

I won’t write about all of the insights at Autcom that impacted me, but I will say that one part in particular Melanie Yergeau‘s presentation was creepy. Don’t misunderstand – Melanie gave a great presentation that was really insightful and interesting. She illustrated one of her points about how some uninformed outsiders “hack” autism by playing this video:

Of course any video that starts, “Autism Speaks wanted people to experience how this must truly feel for parents…”  Of course I could comment on the choice of an Asian child that looks unhappy as the example of autism by a group of almost-exclusively white upper middle class people viewing it – there are definite shades of racism and cultural bias. But even ignoring that, again, our parents are what is important. And apparently the problem isn’t that the girl seems unhappy, it’s that she doesn’t make eye contact. To make the parent feel good.

I didn’t actually think anything could lower my opinion of Autism Speaks as an organization. That was insight one: they are capable of new (to me) and surprising things.

You can look forward to me someday creating an autism simulation using a creepy white kid to stare you down no matter how you try to move out his creepy gaze.

Another insight was more personal, from Suzanne Oliver’s presentation. She’s a music therapist in the US who talked about the importance of rhythm in creating, stopping, or transitioning movement – and how some rhythms could enable an autistic person to move easier, while other rhythms might serve to trap a person in a sort of loop, and yet others might make it hard to move. She presented some research, which I wasn’t able to evaluate, so I’m not going to speak about the scientific basis of her theories – as I really don’t know one way or another about them.

What I will speak about is my personal experience, as an adult with autism. During her presentation, it “clicked” why I use my tablet-based AAC device so much less than my older keyboard-based devices. Certainly, being able to type at 100 WPM or faster makes me prefer keyboards, but there is more to that, and I think it’s applicable to other autistic people too. I set my tablet to provide a short vibration when I tap a key, but not to provide auditory feedback which I believed would disturb other people (probably true).

However, after listening to Suzanne’s presentation, I had an “Ah Ha!” moment. I learned to type on a real IBM keyboard – the kind you could hear three classrooms down the hall when the strong, real, “click” was heard.  Like this video:

This was when keyboards were keyboards.

I’ve never been able to type as fast on newer keyboards, but I never really thought much about why. But I think I know – for whatever reason, the clicks provide that feedback to get the next button pressed.

Sure enough, I tried it at Autcom – I turned on key clicks on my tablet, and sure enough I found not only could I type easier, but I could also think of my next word and thought easier. I could communicate better.

Is it placebo effect? Maybe. Is it something where the keypress rhythm is stimulating my mind in a better way? Maybe. I don’t know. All I know is that I was able to say what I was thinking again, using typing, in a way that I can’t as easily with speech. And I thought I had lost that when I converted to a tablet device. That’s pretty exciting. Being able to say what you think again is exciting! And I think Suzanne is onto something real.

It was also great to see some of my online Facebook friends and people whose writings I really admire.

So, overall it was a good time. Sure, there were moments that weren’t so good, but I won’t get into those right now. Right now, I’ll focus on how to build my creepy staring child simulator and how I might be able to actually use AAC again!