Don’t Be Fooled by Fake Inclusion!

Autistic folk have been sold a fake bill of goods on inclusion.  Don’t keep letting yourselves be fooled.  We haven’t generally seen real inclusion, but it’s about time we do.  And, yes, we can and should demand it.

First, let me talk about what we’ve been sold:

  • Having an autistic on the board of an autism organization is not inclusions.  “Inclusion” is not “you are one of many stakeholders in how society treats and supports people like you.”  No, we are the stakeholders.  Yes, other people are affected by decisions, policies, and treatment of autistic people.  But it’s supposed to be about autistic people, and autistic people are not “one of many” voices on autism.  Inclusion in advocacy leadership involves more than having one voice among many that can shout you down.
  • Inclusion isn’t obvious by counting accommodations, aides, etc.  Inclusion isn’t interaction signal badges, quiet spaces, social contact rules, or similar environmental and social changes.  These things may be part of what makes an environment inclusive, certainly – and in some cases it may be impossible for an environment to be inclusive without them.  But they, themselves, aren’t inclusion.  Nor is there a guarantee that they’ll only be used in an inclusive environment.
  • Inclusion isn’t autism focused.  You do me no good if you build an environment where my autistic traits are valued and accepted, but then turn around and exclude me on the basis of my race, religion, age, sex, gender, orientation, etc.
  • Inclusion isn’t special privileges.  Most of us aren’t seeking that (of course even in the autistic community there are people who seek to take advantage of others).  Rather we’re seeing being able to be.  We’re seeking the ability to participate fully and to enrich your activities and circles.
  • Inclusion isn’t autistic-run.  We’re all different, so just having an autistic run something doesn’t mean that this autistic is inclusive, understands my needs, or is willing to listen when my needs differ from expectations.  Nor is my autism the only area where I might seek inclusion!
  • Inclusion isn’t ADA compliance (or compliance any other checklist, rule, or law).  Compliance is rarely enough to do anything except keep someone out of legal trouble.  Inclusion seeks to actively include people, not just avoid breaking the law or just do what the law requires.  Compliance can (and should) be mandated by government, and should be.  But people will find ways to be non-inclusive no matter how many laws are passed.
  • Inclusion isn’t black and white.  There are times when inclusion requires faith in another person or judgement calls.  There are times when people will take advantage of willingness to actively include, and there are times when people will get inclusion wrong and end up excluding someone.  But it’s not about holding everyone to the same black-and-white rules (that creates exclusion).
  • Inclusion isn’t a written policy.  It’s not about whether your organization says they’ll be decent people.  Being decent people is what you should be doing, period.  With or without a policy.  Policy doesn’t make decent people.  Ethics, integrity, courage, and empathy make a decent person.

Too often, I’ll read a story about, for example, an emotional support animal being denied access on the basis of the dog not meeting the strict definition of a service animal in the ADA or similar law.  Yet, this dog may be the lifeline for someone to keep and maintain an emotional footing outside of their home.  Without the dog, they stay away.  Whether you comply with the ADA or not, prohibiting this person, in this situation, from taking their animal is exclusion.  Period.

Sure, you don’t have to be a decent human being.  So you can exclude them.

But just because you don’t have to be a decent human being doesn’t mean you shouldn’t try to be one.  Seriously.

Or I’ll read a story about an employee fired from a company that claims to support disabled people.  Maybe that employee was late to work too often.  Of course the employee isn’t typically being paid enough to have good access to reliable transportation, particularly if they don’t drive.  So they are stuck at the mercy of the standard, crappy public transit system…or worse – paratransit!  So they are going to be late.  Inclusion would find ways to work with that employee, and not just blindly apply the same consequences for the same objective facts (“late for work too many times”), but will consider the circumstances (“late for work because public transit absolutely stinks and society doesn’t believe disabled people deserve enough money to actually have reliable transportation” versus “late for work because he spent all night getting plastered and didn’t want to wake up that morning, and thought he could get away with being late one more time.”).

Inclusion involves judgement calls and a willingness to step outside the world of black and white certainty.  Sometimes it involves risks.  But, most importantly, because it does involve judgement calls, it also involves taking responsibility, admitting mistakes, and doing our best to rectify any wrongs we create.  It doesn’t need perfection.  But it does need to acknowledge when and where we screw up.  And to do something about it.  I get sick of reading about “unfortunate incidents” where nothing concrete is done in response.

Inclusion involves not only the easy-to-notice stuff that a company or organization can list in a brochure or website, like wheelchair ramps, braille signage, name tags, or other obvious things, but also involves a lot of things that you’ll never get to take credit for – or which people might even like you doing.  Sometimes it involves that restaurant not immediately kicking out the family of the disruptive child, even though that obviously makes other diners unhappy.  Maybe it involves giving the family a chance to get through a time of pain and stress – or maybe it involves reducing the stress that created the problem in the first place.  Inclusion doesn’t involve putting your decisions up to popular vote.  Sometimes inclusion is unpopular.

Inclusion involves finding ways to include, even when you didn’t create the exclusion.  For instance, when seeing a person being bullied or insulted, inclusion involves stepping up and saying telling the bully their behavior isn’t cool.  Even if you aren’t in charge, even if you aren’t the bully or the victim.  Inclusion is not passively sitting there wishing someone would do something.  It’s active and risky (although probably far less risky than your emotions would indicate).

Inclusion is about flexibility.  No matter how wonderful your organization is (or you yourself are), at some point someone is going to need something that goes beyond  what you expected.  Inclusion isn’t referring that person to a group that spends weeks deciding if it’s proper to include someone.  It involves giving front-line people the chance to respond positively, even when there’s no formal policy or procedure.  It shouldn’t take committees and boards to decide if a person should be included!  It almost never should take a dedicated inclusion or disability office.

Inclusion is about making people feel welcome and wanted.  That means you have to actually be welcoming and you have to actually want people there.  You can’t fake this.  That desire has to be there to avoid the passive-agressive hiding behind rules, policy, and tradition that plagues so many organizations that would appear accepting on the surface.

Inclusion is being careful to respond to complaints and concerns in a way that doesn’t perpetrate power imbalances and victimization.  For instance, a person who tells you about sexual harassment shouldn’t be counseled on how to respond to sexual harassment as often happens.  Or a black person that reports racism shouldn’t be told, “Some people are like that, you need to understand that we don’t have control over everyone.”  Or an autistic who has an “outburst” after being provoked by a socially skilled bully shouldn’t be thrown out of a place for disruptive behavior.  Or someone who says their religion was insulted shouldn’t be told, “I’m sure that’s not what so-and-so meant, you must have misunderstood.”  Victim-blaming behavior is common, probably because it’s easier than dealing with the messy world of people.  Sure, not all accusations are true.  But there are ways of responding to allegations without immediately blaming the victim or subjecting the victim to further victimization.  It involves judgement calls and social sensitivity (something even autistics can have).  And it is hard and messy, and may leave you with a sleepless night while you work through things.

Inclusion is about listening.  To the people affected.  I can guess that autistic people don’t like loud noise, for instance.  But it’s probably better to actually find out from the autistic person what makes sense – not just blindly implement quiet policies.  I personally find environments that listen to me and have no purposeful accommodations to be way more accepting than most environments where people spend their careers trying to figure out how to build an autism-friendly environment.  It’s fine to spend your career trying to make part of the world autism-friendly.  But there is no one-size-fits-all.  That’s where listening comes in.  Maybe I don’t need your accommodation.  Maybe I do, but I’d rather do it myself than use what you provide.  Maybe your accommodation will actually exclude me, but you don’t realize it.  Listen.

So, I don’t want to hear about something you bought to be inclusive, nor something you made, nor even something you changed (although you probably have done all of these things if you’re truly being inclusive).  I don’t want to see a token minority person.  I want to hear that you understand people are messy, confusing, and seemingly contradictory.  I want to hear that while you’ve done various things to make something welcoming, you’re willing to listen if someone has concerns.  And I want to hear that you’ll get involved – even when it’s not directly your problem – in fixing instances of exclusion.

Why I am Angry

First, I’m not planning any violence. And that’s exactly why I’m angry.

I’ve learned that if I say I’m upset, I have to also explain “but that’s okay, I’m not going to kill anyone.”  I have to give disclaimers when expressing myself, lest someone misinterpret what I say.  And, yes, that makes me angry! Still, I’m not violent and don’t want to hurt anyone.  You can be angry without that. See, I had to do it again.

I’m angry because of the power imbalance autistic people have to live with every day in advocacy.  If we advocate for autistic people, we have to be particularly careful to let parents of autistic kids know that we understand life is hard for them, even when that has nothing to do with the particular point we’re advocating.  We have to be careful to state that we know that there are wonderful parents, and we’re glad about that.  Only then are we allowed to talk about the critical issues that affect our lives and the lives of other autistics.  But, even then, we’re subjected to inferior status – we can advocate, so long as it isn’t something that any significantly loud group of parents dislikes.  Again, more need for disclaimers!  Heck, this even happens to those of us who are autistic and parents of autistics both (I’m not, but know many who are).

I’m angry because people want to classify and segregate us into neat little categories.  Is he an angry autistic?  A quiet autistic?  A vocal autistic?  A typing autistic?  A competent autistic?  An incompetent autistic?  Low functioning?  High functioning?  Angelic autistic?  Evil autistic?  I’m probably all of these and none of these, depending on when and where.

I’d like to be able to just be me!  I shouldn’t need to explain why I don’t fit into a certain box, or that someone might be a wonderful parent, or that if I’m upset that this isn’t the same as being violent.  I should be allowed to have my emotions, my points of view, my ideas, my being.

Sure, I recognize that I live in a social world with others that have emotions, points of view, ideas, and being all their own.  I’m not suggesting that we get rid of that (in fact, I believe it is often a wonderful thing).  But I should be able to say, “I’m angry about X” without people looking to see if I am carrying a gun, just as anyone else can say this same thing.  Being autistic doesn’t make me dangerous or any of the other things that people might assume about an autistic person.  I should be able to say that I’m angry about how some autistics are given quack medical treatments to cure them – without needing to immediately say “but not all parents are bad!”  Of course they aren’t – I never said they were!

So, yes, this makes me angry.  Again, angry.  Not murderous.

Joel, You’re Not Polite!

First, a word on the word “bigot.”  I’m old enough that I know there’s a time to be nice – that’s when people, upon hearing of an injustice, make real, concrete steps to fix it while seeking out the input of those they hurt.  I’ll be nice when that situation seems possible.  But if you demonstrate that you don’t get it, I’m not going to make it easy on you or comfortable for you to act bigoted.  Sure, a bigot would like me to say “we have a small disagreement” rather than “you are a bigot.”  After all, “we have a small disagreement” means he doesn’t have to implement any change.  “You are a bigot” requires action – either more bigotry or a turn from bigotry.

To be honest, if everyone called out bigotry in direct, “harsh” language, there would be a lot less bigotry.  One thing that allows bigotry to continue is when those not directly involved simply stay silent or minimize the act, out of politeness towards the bigot.

If you are going to increase your bigotosity just because someone pointed out your bigotry in a rude way, well that’s pretty much the definition of a bigot.  Feel free to be rude back to someone rude to you – but if you’re doing something bigoted, it’s time for a change, even if it was pointed out in a rude way.  You’re not morally superior if you hold your ground on bigotry because the other person committed a moral transgression in your eyes (rudeness).  No, in that situation, you’re trying to be controlling.  You’re trying to enforce your idea of rudeness.  Well, that’s fine, but please do it with something other than bigotry as your “stick.”

In fact it is politeness, or the perceived idea of politeness, combined with power imbalances and subtle bigotry in bystanders that prevents people from confronting bigotry.  For example, watch people’s reactions much of the time when a non-disabled person refuses to give up a seat on public transportation to someone who apparently needs it more.  Now, I’m not talking about someone who explains that they need the seat – I’m talking about someone who just doesn’t give a care about someone else.  We’ve been taught it’s rude to get involved in other people’s business.  Sure, we’ll probably speak up if the seat-hogger himself gets rude towards someone else, but if he stays silent, we generally do to.  In other words, we’re more concerned about the seat hogger’s feelings than the person who needs the seat.  So who has the power?  Obviously the one that gets us to react in a way that helps them.

Granted, I probably wouldn’t recommend yelling at the seat hogger, “You dumb ass, can’t you see that someone else needs that seat more than you?”  I would probably suggest an attempt at politeness.  But if that request is refused, or people on the bus know that this person does this repeatedly and polite discussion doesn’t work, then it may be time to at least make the person as uncomfortable as he’s made the people who might need his seat.

My tactic is to generally point out a problem to someone and then watch where they go with it.  Generally, I give them a lot of time (sometimes months).  I start with giving them a chance to see the problem for themselves, after pointing out something that should make the problem obvious.  Later, I explain the problem in detail, again still trying to be “polite.” But if no movement happens, I’m done with politeness – since clearly that didn’t work.  I’m going to be direct enough that it’s not comfortable to remain doing the wrong thing.  Other people do things differently, and I’m glad there are many styles of advocacy.  Sometimes my style works.  Sometimes someone else’s works.  That said, I’d be curious if politeness has ever worked when when someone doesn’t correct the issue in a relatively short period of time – I think at a point, it takes shame, negative publicity, rudeness, and refusal to allow the action to continue without being contested.

To me, the ironic thing is when I’m accused of being rude – perhaps a harm that I’ve caused – but the harm I’m complaining about is far worse than simple rudeness.  For instance, I remember being handed a friend’s wallet after she paid for some items in a store.  The clerk thought I was her minder or something, and that I should have her credit cards and cash.  I asked the clerk, “Do you normally hand cash that belongs to one person to another person?”  The clerk responded by saying, “You don’t have to be so rude.”  Maybe he was right – I don’t know.  But it’s interesting that now the problem was my rudeness, not the fact that he just treated his customer as if she was incapable of holding her own wallet, and, by extension, managing her own financial affairs.  I’d say that was rude too.  Probably more rude than a complaint about giving somebody a wallet that belongs to someone else!

Really, this wasn’t about rudeness.  It was about comfort.  The clerk was now uncomfortable, just as my friend was when her wallet was handed to me.  And we’re not supposed to make you uncomfortable, apparently.  Even if you just made someone very uncomfortable, dismissed their ability to manage their own affairs, prevented them from accessing services, or were otherwise doing something bigoted.  Bigotry is not supposed to be confronted “rudely,” at least if the person doing it thinks they are a nice person who has done nothing wrong in their own eyes.  A large amount of this isn’t about rudeness, but rather about being right or wrong.  And being told you’re wrong often feels rude.  Sure, maybe the right words will help you digest things, but at the end of the day, you either are or aren’t willing to change your behavior and recognize your prior behavior as bigoted (whatever word you use for it).

I’d be curious how others handle this.  What do you do when weeks or months of politeness fails?  Do you stay polite?  What are you changing to get change in the other person or organization?

I Am Not

(This is another oldie from my old site, slightly modified)

I am not…An Autistic’s Response to Prejudice

I am not an object. Don’t talk about me when you are around me unless you are willing to talk to me.

I am not a child. Don’t make decisions for me – let me have influence over my own life.

I am not an extension of your ego. Don’t make me feel guilty for not acting in a way which reflects best upon you.

I am not a project. Don’t think of me as something you are building, God already built me. He doesn’t need your help.

I am not a decoration. Don’t pretend to be my friend, give me a token board membership seat, or take me to your autism event so you have someone to show off to your friends.

I am not a robot. Don’t assume I don’t have feelings.

I am not (insert famous autistic). I don’t think like him/her anymore than you think like John Wayne.

I am not worthless. Don’t throw me away when you grow tired of me, but value me, my insights, and my feelings. My life is as important as yours.

I am not a criminal. Don’t lock me up when I haven’t done anything wrong, but allow me to walk outside of whatever walls you may think I belong behind.

I am not a monster. Don’t stay away from me simply because I do something you don’t do; you do things I don’t, too.

I am not an experiment. Don’t test your theory on me.

I am not defective. You don’t need to repair or fix me.  Allow me to be the person I am.

I am not a puzzle. I don’t need you to “put me together”. You are as puzzling to me as I am to you, yet no one calls you a puzzle.

I am a person.

Responding to Your Own Prejudice

Someone I know voiced their upset at an advocacy organization that discriminated against them.  The whole situation reminded me of experiences I’ve had in the past (albeit different scenarios that didn’t affect me as significantly as it affected this person).

You are prejudiced.  Really.

You act like a bigot.  Really.

You discriminate.  Really.

Sure, you don’t do this all the time, in all ways.  And it need not be a big deal.  None of us fully understand the experiences of others, so it’s really easy to discriminate out of ignorance (and, no, ignorance is not a dirty word).

If you are a member of a minority community, you’ll experience prejudice, bigotry, and discrimination from others – even from people that are “good people.”

In fact, for some reason, I’ve found some of the worst discrimination comes from advocates for other minority groups.  I’ve also found some of the best, most accepting, most decent people are among advocates for other minority groups.  How can advocates be so much more polarizing than the general population?  I’m not sure.  I expect them to be a bit abrasive when challenging power structures that have discriminated against them.  but I’m always surprised when they turn around and discriminate against others.

Quick: Think of the last time someone said you were not being accepting, open, accommodating, etc.  Think of this last time when someone said that something you were doing was hurting a member of a minority.  How did you respond?

If your response was denial, explaining how you weren’t discriminating, being offended, or similar, please think about your actions carefully.  Nobody likes being told they’ve done bad.  And nobody likes to be seen as discriminating.  I suspect part of the reason I’ve had so much trouble with people who should know better (advocates for other minority groups) compared to people who shouldn’t know better (such as employers who don’t know about the minority issues important to me) is that the advocates for other groups have their identity tied up in not being discriminatory.  So when they are told something they do is discriminatory, this is a challenge to their very self-image.

I’ve seen amazing denial by organizations when confronted with this type of discrimination.  I’ve asked organizations to simply call a room something other than a “quiet room” when they create an accommodation for people who are having overload (quiet room also can mean the room where a person might be secured to a bed against their will, which obviously can be very triggering for people who have lived through that experience) – and seen that organization respond by digging in their heals and explaining why that term is not discriminatory.  Well, who really cares?  How hard is it to call a room something different?  But I apparently challenged some egos that were tied up in being seen as progressive, understanding, and accommodating people.  So when I said, “Hey, you are normally great people, but this is a problem,” I was telling them that they weren’t quite as great of advocates as they wanted to be.

At that point, they could have responded two ways.  They could have said, “Oh, I didn’t know.  It’s easy to change the name of the room.”  Or they could have fought for their honor.  They chose the fight, not realizing that this doesn’t give you honor, it takes it away.

You want to show me you’re an ally?  It’s simple.  LISTEN.  Seriously, listen.  If people in a minority group tell you about something that’s hurting them, take it seriously.  Even if it means a little work or public acknowledgement of your change.

You want to show me you want a fight?  That’s simple too.  Ignore my pain and the discrimination you are showing.  Tell me it’s not as important as something else.  Tell me that you are really a good person.  Tell me that people I care about don’t need whatever it was I was asking for.  And then get mad at me for sticking to my own community and needs above that of a community discriminating against me.  For extra points make sure to tell me how I’m aggressive, over-reacting, trying to start a fight, or am otherwise acting against my cause – while you do nothing for my cause.

Your acts don’t tell me if your discriminatory.  They might tell me you might be discriminatory, but you also might just be ignorant – like the rest of us.  None of us can know everything about everyone’s experiences!  It’s your response to people who call out your ignorance that tells me if your a bigot.

You’re either a great person or a bigot.  It has nothing to do with whether you did something wrong.  It has everything to do with how you respond.  It’s your move (and my move).