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.

If You See Something, Say Something – and Flowers

I’ve long been both a fan and a critic of the “report unusual activity” types of anti-terrorism programs.

How can I be a fan and a critic?  It’s simple.  First, I’m a fan because I used to work for government implementing physical and logical security for computer systems.  If you have trained personnel, reporting unusual activity can be extremely helpful.

But that’s why I’m also a critic.  Note that above I mentioned trained personnel.  Most people simply don’t know what is normal.  I don’t say that as a joke – I really mean it.  Just because something is unusual doesn’t make it abnormal, and, even more importantly, unusual is not the same as dangerous.

A few months ago, my wife was placing some flowers around our church’s sign.  She chose to do this – wisely – at night.  She has light skin which burns easily and is extremely sun-sensitive – enough so that she can get very ill by being exposed to sunlight for long periods.  Of course there is nothing wrong with planting flowers at midnight – even if it is a bit unusual.  Unfortunately, while she was doing this, a city police officer was doing a routine patrol.

Normally, one would think that it would be a good thing for law enforcement to be keeping the peace – particularly when a disabled person (who may be more vulnerable than others) is out and about doing something like planting flowers.  And, yes, that should be a good thing.  But when officers receive poor training and are trained “investigate unusual activity”, problems can occur.

The officer stopped his car, asked for my wife’s ID, and proceeded to quiz her on why she would be attempting to beautify her church’s property.  She was asked if she had permission, if she was a member of the church, and generally just bothered unnecessarily – there was never any suspicion of a crime!  She was “planting flowers while disabled”, which, apparently, is unusual and thus suspicious.

Now, I can hear some people saying, “The officer may have just been checking that she wasn’t stealing things” or some such.  True, that could have been what was going on.  But a simple casual and non-invasive (passive) observation while driving past should have been enough to make it clear she wasn’t spray painting the sign, trampling flowers, or stealing anything.  An officer who was still unsure could have pulled up and asked, politely, about the sign and flowers (“Are you the person who has been putting the wonderful flowers up here?”) – and would have immediately been able to tell the difference between a sign-keeper and a thug by the response.  But, instead, something unusual was going on, so it prompted an intrusive investigation in the eyes of this officer.

She was also told, when she asked why she was being asked for ID and questioned, that her information would be kept on file in a contact report.  It’s a very scary thing when police start tracking the whereabouts of law abiding citizens.

Unusual isn’t dangerous.  I’m not a conspiracy theorist.  Really.  And while my wife’s rights were only slightly violated (yes, her right to be left alone by police and to be secure on her person and papers was violated), we do need to stand guard and watch against this policing of normality.  I’m not going to say this was a gross abuse of police power.  It wasn’t.  It was a slight abuse of police power.  That said, it was still an abuse.

It’s not only police that sometimes take things a bit further than they should (or, in some cases, a lot further).  Private security is in on the act too.  Read this NPR story about the Mall of America’s private anti-terrorism force, implementing “if you see something, say something,” in a dumb way.  Turns out “seeing something” is a lot more common if the something is being done by someone who is not white.  And the “something” can be something as simple as taking video in Minnesota’s top tourist destination!

Our genetics and socialization have trained us that terrorists, criminals, and just plain bad guys are not like us – and further, someone not like us is a possible criminal.  So if you see someone doing something unusual, not like you would do, they are a potential criminal or danger.  But, really, unusual is not dangerous.  Even if you feel threatened, that doesn’t actually equate to being threatened.

Disabled people – especially people with neurological, mental, or intellectual disabilities – are seen as dangerous.  We’re not.  We’re far more likely to be victims than perpetrators. You don’t need protection from us.  We need protection from  you (or, rather, from the often non-disabled people who attack and abuse us).

What can be done?  It’s simple.  People who are going to respond to reports of “unusual” behavior (police come to mind, as does private security; likewise, emergency medical personnel, school staff, and, really, anyone that deals with the public) need to be exposed to the wide variety of human experience.  I’m sure my wife isn’t the first to plant flowers at night – even if it was unusual to the police officer.  Likewise, I’m sure the man referenced in the NPR story wasn’t the only one to take video of Mall of America!

Until then, we need to require those in governmental authority to respect our rights.  And we ourselves need to remember that there’s a huge difference between someone harming others and someone doing something unusual.

Transgender Day of Remembrance

Sometimes, as a member of one minority group (in my case, autistics), it’s easy to forget about others.  It’s easy to think that your own group faces the worst suffering or abuse.  Suffering and abuse isn’t like that – there’s a lot of horror in the world.

I believe in justice for all, not just my people (autistics).  So I want to highlight something that is happening this week.

It is not possible to be in favor of justice for some people and not be in favor of justice for all people.
– Martin Luther King, Jr.

Tuesday, Nov 20th, is Transgender Day of Remembrance.  It’s an annual event where people take a few minutes out of their day and remember that people have been killed for living authentic lives as the gender that they are rather than the gender that some would have them live.

One way you can show support for people is to attend a public remembrance event.  See http://www.transgenderdor.org/ to find one near you.  I’ll warn you that it’s very difficult to listen to the names of the dead without realizing that someone’s brother, sister, dad, mom, son, daughter, friend, wife, or husband is forever gone.  You can help those who know someone who died, and those who have been hurt by others, by showing your support for them.  You don’t need to know a trans person or be a trans person.  Just being there will show love and support.

Trans people don’t just face the threat of death (at a far higher rate than others in the LGBT community), but also face injustice in many other areas.  A heartbreaking read is Injustice at Every Turn, a report on the state of discrimination against trans people in the US.  There are a bunch of horrible statistics there.  For instance, nearly 1 in 5 (19%) of trans people say they were denied medical care because they were transgender.  Imagine for a minute having your doctor say “I can’t treat people like you,” simply because of a medically irrelevant characteristic and a wrongheaded view of morals (hint: medical needs should take priority over your religious hangups; if you can’t do that, the medical field is the wrong field for you).

I’m praying for a day when people are allowed to be who they are without fear of attack or discrimination.  Until then, I’ll speak out when I see injustice.  I hope you will too.  The worst thing we can do as allies, short of actually attacking another person, is to enable that attack by remaining silent.

As Martin Luther King, Jr. also said:

History will have to record that the greatest tragedy of this period of social transition was not the strident clamor of the bad people, but the appalling silence of the good people.

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?

Responses to being Called Out

People respond to being “called out” for prejudice, ableism, sexism, bigotry, etc, in many different ways.  I won’t pretend to know why – I don’t.  But I do know that in my life, I’ve seen many reactions.  The least common, sadly, was recognition of the problem along with correction of the problem.

Note that all of these can apply to organizations as well as individuals – and that organizations are even more likely to do one of the wrong things.  Here’s what I’ve seen when people are “called out” on bigotry:

1. I’ll call these the “appeasers”.  These people do as little as they believe necessary just to get the person who called them out to shut up.  So the person might make a small, token apology and promise to do better next time – without any hard action – hoping that by the time next time comes up, you will be long gone.

2. I’ll call this group the “hurt toes”.  A lot of time, the first response to being told that a person is bigoted is a complaint about the way they were told they were bigoted.  Now there probably already was some sort of harm, or someone was really concerned about a deep harm that the person was about to do – but this isn’t important.  What’s important is that you didn’t tell them they were a bigot in a nice way.  This leads to either ignoring the request completely or digging in deeper, while blaming the person who made the request and their “rudeness” for their new, more bigoted, position.

3. The next group is the “under appreciated”.  This group feels that they have already went out of their way to include others, so any additional requests or comments is too much.  Can’t people be happy with what they already did?  This is particularly common with ADA requests, such as a person asking for a sign language interpreter and getting a response along the lines of “We already have wheelchair entrances that cost $500,000 to build.  We allow service animals at the meeting.  We had to turn off our strobe lights for you people.  We hired a cripple to greet people.  What the fuck else do you want us to do?  Are you people never happy?”  Note that most commonly the things they feel under appreciated for are things that perhaps nobody involved even needed, or which are basic legal requirements.

4. Then there is the “I’m only human”.  In this group, people respond to any comment about bigotry by essentially saying they are powerless to prevent it.  It might be something like a change in language (“I’ve been using that term forever.”) or something that more complex (“we can’t be responsible for only having stairs to access the meeting, it’s not our facility”).  Regardless, it’s likely something that is within the power of the person, either directly (such as using respectful language) or indirectly (such as caring and finding solutions when a facility is inaccessible).

5. The “sliders” are people who fear the future, usually with an absurd, extreme twist.  This is exceedingly common in disability accommodation requests – “I know giving you the option to take that test using a pencil instead of a pen is a small thing, but if we let you get that without making you jump through tons of hoops, then someone might come in and want hundreds of thousands of dollars of building modifications we can’t be sure they need.”  It’s also very common with immigrant and LGBT issues – typically a fear that in twenty years, they won’t be able to speak their own language, marry an opposite-sex partner, or simply be the majority.  Usually the fears are unfounded and illogical.

6. Another group is the “litigaphobic”.  These people fear litigation above all.  Now, you would think that would encourage them to follow the law, but typically not.  Typically they are a subtype of slider who is fearful that if they do the right thing for you, they won’t be able to not do what everyone else wants without fear of a lawsuit.  Or, they’ll develop complex worries, such as, “If we let that developmentally disabled older child participate in this program, we’re opening ourselves up for lawsuits if a younger child gets hurt.”  Typically these complex worries have no basis in reality.  They will ironically violate laws to avoid being sued.

7. The “equalitarians” want everyone to be equal, or so they say (and often believe).  That means the rules should be the same for everyone, even when that is hardly equality.  They love the phrase “Special Rights.”  They will enforce rules that prevent equality, while claiming anything else would be unequal.  For instance, they might tell a mother, “If I let you pump breast milk a couple times a week, then I’m essentially penalizing others who don’t do that, since they have to take their breaks at different times.  So it’s not right to do this.”  This group is also very opposed to disability rights, since they see a disability accommodation not as a way of allowing equal participation from everyone, but rather as something the disabled person gets that others didn’t (even though the others very likely wouldn’t want or need it).

8. The “historians” seek a continuity with their idea of the past (which is not always what the past was).  So, if they or their organization always did something a certain way, that proves that change is unnecessary to them.  After all, if it was necessary, they would have done it from, apparently, day one.

9. The “I have satisfied customers” can’t see how what they did is bigoted or discriminatory.  So it isn’t, and that’s final.  For instance, a store owner might say, “I don’t know what you mean by saying that my store discriminates.  None of the frequent customers to my second floor location say they can’t get up the stairs.  I asked them.”  The people they don’t discriminate are happy, so they don’t see any problems.

10. The “it’s not bigoted to…” people are probably the most intellectually honest of the people listed so far.  They are the only ones so far who don’t try to justify doing the wrong thing for reasons other than just “I don’t want to.”  We see these people in our political discorse – “It’s not bigoted to say that gays are child molesters and that they can’t raise kids well.”  At least you know where you stand with these people – you know they are bigots, and they are in fact happy in their bigotry, without the need to justify their bigotry.  Ironically, they are the easiest to deal with, but they are also the group that groups 1 through 9 above fear being lumped into more than anything else.  When you tell a slider they are a bigot, they immediately hear “You’re telling me I’m like that crazy pastor from Kansas who protests soldiers funerals!”  No, we’re not.  We know your motivation, though still wrong, is different.

11. So that gives us the 11th group – the “how dare you call me a bigots!”  This group believes the greatest wrong that can be done to someone is to say they are a bigot.  And, like the “hurt toes,” they now focus on the offense you’ve caused them rather then the wrong they’ve done.

12. The “justifier.”  This person justifies what they did, based on some attribute of the victim or society.  They typically say that anyone could have done what they did, so it wasn’t really bad after all.  Rather than seeing ignorance of something as a mistake that they can correct, they respond that, essentially, you shouldn’t expect someone to change since there are ignorant people.  You might hear phrases such as “lots of people use that term” or “if a blind person can’t access this business, they shouldn’t be going out without help.”

13. Finally, we have the “repentant.”  The repentant is a group of people who “turned from their wicked ways.”  This typically involves both a real, actual apology (without conditions, justifications, or explanations of why it wasn’t that bad).  Unlike the “appeasers”, the apology is then followed by clear action.  Through the whole process, the involvement of people hurt is sought (as someone to learn from, not someone to convince not to sue them, or to convince that bigotry/discrimination didn’t really take place).  This is a rare breed of person and should be cherished when found.

Did I miss any?