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.