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.

My AACC Presentation – And Some Survey Results

I’m not going to go into great detail about the survey I asked for help with (although if you’re willing to participate still – and you don’t have to be autistic – please do!), but I will give some general findings so far:

  • Most of us (autistics) have been abused. This aligns with research, and, as expected.
  • About half of us (autistics) who have had an intimate relationship have been abused by someone in an intimate relationship. I’m not yet aware of research on this.
  • Non-autistics also have seen a lot of abuse, although it’s not as common – their numbers are about half of that of the autistic population.  This aligns with research.
  • A substantial portion of us identify as having a non-binary gender identity. This aligns with research.
  • A substantial portion of women identify as bi, asexual, or other non-heterosexual.  Substantial enough that heterosexual is a minority among autistic women. This is a somewhat surprising finding, although it was expected that non-straight people were more common among autistics, particularly autistic women.  It’s a bit inconclusive for the men so far. There’s some research on this, but it’s also inconclusive (for both men and women).

I’ll put some more results out in a while – I’m still hoping for more responses to the survey.  I really appreciate people taking the time to take the survey and leave comments on it – the comments in particular have been helpful as I prepare the talk. The more people that comment, the more interesting the results will be for the entire community!

At AACC 2014, I’m going to be presenting, “Dont touch me there: Intimacy for Autistic Abuse Survivors.” This will talk about both sexual and non-sexual intimate relationships (obviously for people who want an intimate relationship – not everyone needs to want this), with a focus on techniques, tips, and ways of managing intimacy for people who have faced abuse that may make intimacy difficult. We’ll also talk about our rights in relationships – what things can we expect to have in a relationship with a non-abusive partner. I’m also going to talk about some partner issues for people with abuse – such as the common fear in partners that they’ll do something that reminds the survivor of past abuse, which is certainly not what any loving partner wants to do. I’m also going to include topics on autistic differences, as for autistic abuse survivors, both autism and abuse impact what makes an intimate relationship enjoyable to us. I hope to be respectful of differences people have in religious background, sexual orientation, and gender identity.

I’m really looking forward to this because I feel this is a topic that’s critical for us. We have a lot of hurt people who want to have intimacy (sexual or non-sexual) with other people, but find it difficult because of what has been done to them in the past.

I also recognize that this is only one piece of the puzzle – finding someone for a relationship is another key piece of the puzzle, but I’m not going to spend much time on that, since I don’t have many tips of things you can do (other than being yourself and finding completeness in yourself).

So, if you end up at AACC 2014, I’d love to see you at this presentation. And I certainly would love to know what types of things you’ve found helpful in intimate relationships if you’ve been abused (or even if you just have autism). What techniques or tips or advice do you have for others who might have difficulty in a relationship because of abuse or autism?

Don’t Mourn For Us. Even as a phase.

In 1993, Jim Sinclair wrote what has become a key foundational writing of the autism movement – Don’t Mourn for Us.  It is time to move past this as a community however.

In 1993, Jim’s words were revolutionary – you may need to mourn for the imaginary child you didn’t have on the path to accepting the child you actually have. That the child you mourn for never existed.  That you need to go through that phase and move on. That you may need to mourn for the loss of your dreams and expectations, the realization that you never had what you thought you had (a neurotypical child).

That’s powerful and I won’t detract from Jim’s words here.

But it’s time to move past that. It’s time to move past the expectation that it is normal and okay to be upset when you find out your child is autistic. Even if that normal and okay upset isn’t directed at the autistic child, but directed at this mythical non-existent child you thought you had.

The gay community has went through this. 25 years ago, a child telling their parent, “I’m gay” would cause grief, denial, anger, etc. If the parent was a good parent, they would move past this phase and embrace their child. That was considered a great thing – that the child only had to watch mom and dad mourn for a bit, and that mom and dad got past it.

Today, we see story after story of a different reality – that of mom and dad saying, “That’s awesome, let’s celebrate!” There is now, in many families, joy that their child is living their life in a way that makes the child happy and complete.  Not sadness for loss of expectations or an imagined child, but joy.

Near the end of Don’t Mourn for Us, Jim says:

After you’ve started that letting go, come back and look at your autistic child again, and say to yourself: “This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don’t know who this child is or what it will become. But I know it’s a child, stranded in an alien world, without parents of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it. And because this alien child happened to drop into my life, that job is mine if I want it.”

I say parent’s can do this without letting go.  And where they can’t, we’ve failed as advocates to express what it means to be autistic.  Just as it took the LGB community years to get to the point where many parents no longer have to go through a -1-2morning process, it can take us years to get there.  But make no mistake – that is where we need to go.

We need to go to a world that finding out your child is autistic is no more tramatic or horrible or scary than finding out your child is gay (yes, I realize some people don’t have parents that can accept LGBT people – but that’s changing and the next generation will have an easier time, until one day no child is rejected on the basis of LGBT identity). Yes, your child may be disabled. Yes, your child may need to be raised differently than non-autistic children. Yes, your child may not be able to do some things (what child can do all things?). But I’m waiting and looking forward to the day when we don’t talk about how you need to love the child you have, this new-to-you creature, but rather that you just keep loving the child you’ve always known. Sure, you have a new label, but you knew your child before and you will still know your child.

THAT is what I want to see for the autistic community. Maybe that’s radical, but I don’t think it is. I think it is possible, even today, and should be the expectation. Sure, we should recognize the reality that some parents will have to grieve over the child they never had. But that doesn’t mean we should normalize this process or assume that everyone has to go through it. They don’t. It’s okay to not mourn. It’s okay to not mourn for any child, imaginary or real. And that should be the expectation for normalcy of parenting, with compassion (but not normalization) extended to parents that might not quite be here yet.

What’s a Safe Space?

Previously, I’ve written about what I see as the overuse of the word “trigger” – how it has essentially become code word for “something I have a strong negative reaction to” and thus not at all the original intent of the word (which was to label those things that, when present, could cause a person to become a danger to someone or to lose the ability to manage their life for a time).  That overuse means that people who feel strongly about some subjects and people who have serious risk to themselves are characterized the same – and that’s a disservice to people who need to explain that, no, this isn’t just something they strongly oppose and have anger about, but is something they can’t be around – not because they don’t like it, but because they’ll lose control.

There’s another term that has morphed over the years: safe space. This term has evolved over the years – I’m going to discuss that evolution and how safe space might be applied by an organization that isn’t only designed to be a safe space, if that organization would want to. I’m going to use the example of a church service for this, but obviously it would apply to other contexts.

Th term, “safe space,” seems to have originated with domestic violence shelters and outreach – the goal was to provide a physical “safe space” where a victim of domestic violence would be safe from their attacker.  These spaces might not have well publicized locations (so the abuser can’t find it), would not identify people staying there, would have procedures for people arriving and departing the space without being tracked, might have security staff, and would be understanding that people who have been abused in their home will feel uneasy just about anywhere after their sanctuary was invaded.

Even if you wanted to, you couldn’t make something like a church a “safe space” in this regard – it probably wouldn’t have security personnel, a hidden location, and procedures to keep the identity of attendees secret, nor would other attendees be well-vetted before arriving.  They might understand domestic abuse and do what they can to keep a victim physically safe, but a normal Sunday service wouldn’t be a safe-space, no matter how great the church, in the original “safe space” sense, without substantial changes.  That said, that doesn’t prevent them from being decent and using some sense – things like child release policies (make sure children in child care are only released to an authorized person, for instance), ensuring that ushers and others know about legal orders or the need to ask certain people to leave (with police help if needed) if they visit the service, and respecting the idea that the victim is in a very vulnerable and hurt state.  A church might even offer key sacraments through a visit to a truly safe space. But, regardless, it’s not likely to be able to make the service itself a safe space in the same way as a domestic violence shelter may, no matter how well intentioned or how good the people are.

Later, the term, “safe space,” became used by feminist and LGBT groups.  Both used the term to means something different than the space used by the domestic violence safe spaces.

Some women’s groups used the term to mean, “places where we are safe from oppression by men.”  This was some of the original intent of women-only (or womyn-only) space – the idea was that, generally, the people oppressing women were men, so without men, there would be less oppression.  This greatly simplifies the concept, and it is quite a bit more nuanced than this would imply – and I know that (and you should too before you just repeat this!).  However, two things came of this – first, obviously some women can internalize prejudice and thus perpetuate prejudice against themselves and other women.  Secondly, creating such a space meant creating a definition of who could be there – and any such definition will be controversial (for instance, is a trans woman allowed?  Whether or not she’s had surgery?  How about an intersexed person?  Or a trans man?).  There have been many fights over who is a woman (I’ll also add that women aren’t the only marginalized community to fight over who is part of their community).  So this definition has been changing over the years, bringing it more in line with the LGBT definition of safe space.

There’s some purposes served by having a space for a marginalized community – it can be valuable for growing a community, giving people a sense of comfort the outside world lacks, and providing freedom for people to say and do things they might not do in the wider world.

But of course this, too, isn’t a definition of safe space that could be applied to our hypothetical church service – unless the church was to exclude all whites, men, non-disabled, etc, people to make it a safe place in this sense for marginalized populations (such as non-whites, women, disabled people, etc).

That takes us to the LGBT definition.  I remember being a kid in school when this started in my area – certain teachers would have a pink triangle (pointed down). I didn’t know the pink triangle had roots in LGBT oppression and was now a symbol of the fight against that oppression, but I was told it symbolized “safe space.”  That is, it was a place where an LGB (I suspect most safe spaces weren’t ready for T at the time) student could go if he or she needed someone to talk to. It would be a place where the person’s sexual orientation wouldn’t be challenged, nor would the person be told they were a sinner. There was physical safety as well – the person displaying the triangle wasn’t going to attack someone who discloses homosexuality.

Being older, and with more understanding of the LGBT movement, I now realize that it was meant to be a place of support, to give the student a place to have a shoulder to lean on that wouldn’t be judgmental, wouldn’t gossip about it, and maybe could help the student find ways of dealing with the discrimination they face. There weren’t a lot of places where someone could go without hearing about the old testament or telling someone who might gossip about it.  I also learned the LGB safe space concept started not in classrooms, but in corporate America, as a way for allies to show their support in a more practical way.

Other oppressed populations have also adopted this concept (including many women’s rights organizations, replacing the original definitions used by these types of organizations).

I believe this last form of safe space – the LGBT movement’s definition of safe space – is the most common definition of safe space used today.  Today, when someone says, “safe space,” what they are probably saying is, “Certain beliefs will not be expressed here, nor will people be judged for certain actions. There’s a community standard in place.”  For example, a disability-rights safe space might prohibit blatant ablism and might require people participating to understand the basics of disability rights already (so that each new non-disabled person joining the space wouldn’t need to be taught disability 101 by the disabled people in the space who are likely very, very sick of doing this teaching with people).

Again, with our hypothetical church service, making it this type of safe space can be difficult. Let’s continue with our disability-rights safe space concept. Maybe the church does decide that they will not allow, uncontested, the discussion of why disabled people should be in institutions. That won’t however stop someone from coming off the street and raising the topic until someone stands up and says, “We don’t do that here” (which will probably raise all sorts of other problems, like how the person is disabled themselves or how they have a disabled family member). Yes, hopefully others will step up, but should the person be removed from the church or should they be educated? If educated, that is one of the things that safe space is supposed to protect the marginalized person from having to do – it gets old to have to give disability 101 training to everyone! But of course some people do need disability 101 training. Maybe you can get non-disabled people to do that training, but that training will take time. What do you do in the meantime?

I believe strongly in value of all the types of safe space listed above, and feel that it is important to have these spaces for people. But, at the same time, I also believe it’s important to define exactly what we want out of our safe spaces – particularly when extending this to spaces that aren’t dedicated safe spaces in the way a domestic violence shelter may be (such as our hypothetical church service). How do we make that church service (or anything else) a safe space? What does safe mean? Does it mean physical protection from your abusive husband? A place where people who you won’t run into a person who shares a common characteristic with your most common oppressors?  A place where you will not have to listen to people’s “ism’s”, such as racism, ablism, and misogyny (an -ism by another suffix)? Or is it a place where you don’t have to explain to every single new person how to interact decently?

It’s worth having these discussions. And certainly, once people are aware of an issue of oppression or safety, they should consider it in the spaces they have authority in – certainly no ally of the LGBT community, for instance, wants to be part of a place that allows homophobes to spew hate. Or which requires the one person in a commonly oppressed group to have to educate everyone in the organization, continually. Or to allow a domestic abuser to gain access to children he (or she) abused. Nothing is perfect, but we can get better.

At the same time, it’s important to say what we want when we want safe space. What, exactly, are the parameters for our space, and how is this different from just wanting a space where everyone is like us or nobody disagrees with us? It is different, but it’s important to be able to explain why and not just use the code word “safety”. Everyone wants safety, but we all have different ideas of what “safe” means. So we need to be explicit.

In the meantime, we need to keep working to eliminate the -isms, to educate people about different kinds of people, and to make sure abuse victims really are safe from their abusers.

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.