Inclusion and accessibility don’t go without saying

People don’t know that you will meet their access needs unless you tell them you will. Many people won’t, and people with disabilities can’t read your mind to figure out your intentions.

It goes a long way towards easing stress for everyone if you talk about access explicitly, rather than assuming it goes without saying that you will do the right thing.

For instance, if your store sign says “no dogs allowed” it should also say something like “except service dogs” (don’t say guide dogs specifically, because there are a lot of reasons other than blindness that some people have service animals)

  • This sends the message that you know service dogs exist
  • And that you’re not going to kick them out of the store for having a service dog
  • This does not go without saying; people with service dogs get illegally kicked out of stores all the time

Similarly, if you ban laptops/electronics, it’s important to say “except when they are needed by students with disabilities.” (and not to demand proof of diagnosis).

If you’re organizing a retreat and there is a rule against outside food, it’s important to either make an exception for people with dietary needs, or else work with people to provide them food they can eat. And to make it explicit that you will do this, because it very much does not go without saying.

If you’re advertising an event and it’s in an accessible venue (which it should be), put that information on the fliers (and make sure it’s true). That doesn’t go without saying. Many organizations whose values suggest that they should care about accessibility routinely hold events in completely inaccessible venues. No one will know that you’re doing it the right way unless you tell them.

There are any number of other examples.

Short version: Keep in mind that people with disabilities can’t read your mind, and make it explicit that you will meet access needs, especially if your statements or rules suggest that you won’t.

Setting the stage for disclosure of awkward or stigmatized things

You don’t have to like being disabled

This is what I think disability acceptance means:

  • Facing what your abilities are and aren’t
  • Accepting yourself as already having value
  • Living your life now and doing things you care about.
  • Not putting your life on hold waiting for a cure

But, some kinds of acceptance talk end up putting destructive kinds of pressure on people. And I think:

  • It’s ok to like or dislike being disabled. It’s ok to like some aspects of your condition but not others
  • It’s ok to want treatment and to be frustrated that it isn’t available
  • It’s ok to pursue treatment that *is* available
  • It’s ok to work hard to gain or keep certain physical or cognitive abilities, and to be happy or proud that you have them
  • It’s ok to decide that some abilities aren’t worth keeping, and to be happy or proud about moving on from them
  • All of those things are very personal choices, and no one’s business but your own
  • None of them are betrayals of acceptance or other disabled people

The point of acceptance is to get past magical thinking.

It means seeing yourself as you actually are, without being consumed by either tragedy or the need to focus on overcoming disability. It means accepting where you are, and living now, without putting your life on hold waiting for a cure.

Acceptance creates abilities. Acceptance makes it easier to be happy and to make good decisions. But acceptance does not solve everything, and it does not come with an obligation to love absolutely every aspect of being disabled.

Self-diagnosed people

How do you feel about self-diagnosed autistics?
realsocialskills said:
I think that autistic people are autistic whether or not that they have been diagnosed.
I think people often know that they are autistic without a doctor telling them that they are. I have absolutely zero problems with someone thinking that they are autistic or wanting help. Even if it turns out that they are mistaken and not actually autistic. That happens sometimes, but I don’t think that’s hurting anyone, and I don’t think it’s a legitimate reason to object to self-diagnosis.
I think that people with disabilities need support, coping methods, and accommodations whether or not they’re diagnosed with anything.
I think we should move towards a world in which accessibility is seen as routine and normal rather than something people have to beg for access to. As it stands now, support resources for people with disabilities are often drastically limited. That is not the fault of people who identify their problems and support needs without medical diagnosis. Resources are scarce because our culture doesn’t value people with disabilities enough to make support readily available, or to routinely make accessibility and inclusion part of planning in schools, organizations, architecture, workplaces, or anywhere else. That’s the problem. Self-diagnosers who want help are not the problem.
There’s this notion that people with disabilities who need to do things differently are somehow trying to get away with something, and that they need to pass an extremely high bar to prove that they can’t help it. That attitude hurts all of us. Hating people who self-diagnose plays into that attitude, and it doesn’t help anyone.

Acceptance is the opposite of giving up

I’ve seen a disconnect between parents and self-advocates when we talk about disability acceptance:

  • Advocate: Disability acceptance is really important. Disability is part of who I am.
  • Parent: You mean I should just accept that my kid is suffering and can’t do anything and not even try to help them?!
  • Or, even worse: Yes, it is. My kid is my special little pillow angel and I love her just the way she is. It’s great having a kid who will never grow up.

By acceptance, we do not mean either of those things. What we mean is more like this:

  • Kids whose development is atypical get treated like they’re failing before they’re even old enough for kindergarten. (See all those checklists that say “by the time your child is 2, he or she should be…”, and think about what it’s like for a child’s earliest memories to involve adults thinking they were failing)
  • Being disabled isn’t a failure, and it shouldn’t be seen as one. There is no should in development, and there is no should in bodies.
  • Childhood isn’t something you can flunk
  • Magical thinking will not help, and neither will centering your life around searching for a cure
  • Children with disabilities who live to adulthood usually become adults with disabilities
  • They need to be prepared for disabled adulthood, not encouraged to think that if they work hard enough they will be normal
  • It is ok to be a disabled child, to develop atypically, and to become an adult with a disability
  • You can have a good life and be ok with your actual brain and body
  • Imagining that you will have a fundamentally different body one day makes everything harder
  • Life gets better when you accept yourself and work with your body and brain rather than against it
  • Shame is not a cure
  • Disability is not an emergency, and panicked intense early intervention will not make disability go away
  • Early education can be important, and kids with disabilities need appropriate support and care, and in many cases medical treatment
  • But their life needs to contain things other than treatment; people with disabilities need to do things besides be disabled and get therapy
  • Their life is already worth living and they don’t need to be cured to be ok
  • Don’t panic

Short version: Acceptance isn’t about denying that some aspects of disability can be awful, and it’s not about categorically rejecting medical treatment. It’s about working with yourself rather than against yourself, and pursing life now rather than waiting for a cure.

Nice Lady Therapists

Content warning: this post is about physical and emotional harm done to people (especially children) with disabilities by (mostly) female therapists. Proceed with caution.

This is a hard post to write. It’s about abuse. It’s about a kind of abuse I haven’t seen described much. I think abuse is the right word, even though a lot of abusers probably genuinely think they’re doing the right thing.

Anyway, here goes:

Many, many people with disabilities I know have been harmed or even outright abused by Nice Lady Therapists. (Usual caveat: not all therapists are abusive, and this post is not opposition to childhood therapy. I’m saying that therapists need to stop hurting kids and other vulnerable people, not that therapy is evil. Pointing out that therapy is often important and that many therapists are good is not an answer to what I am describing.)

Nice Lady Therapists tell us that, whatever they do to us is by definition nice, and good for us. And that we like it, and that they love us, and that they are rescuing us, and that we are grateful.

They have a brightly-decorated therapy room full of toys, and assure every adult they come across that ~their kids~ love therapy. They use a lot of praise and enthusiastic affect, and maybe positive reinforcement with stickers and prizes. They might call the things they have kids do games. Some of them really do play games.

And every interaction with them is degrading in a way that’s hard to pinpoint, and hard to recover from. They do all kinds of things to kids with disabilities that typically developing kids would never be expected to tolerate. And they do it with a smile, and expect the kids they’re doing it to to smile back.

Sometimes it hurts physically, sometimes it hurts emotionally. Sometimes it’s a matter of being 12 years old and expected to trace a picture for toddlers for the zillionth time. And being told “This is fun! I used to do this all the time when I was a kid!”.

Sometimes it’s a matter of being forced to do a frightening or physically painful exercise, and being forbidden to express pain or fear. It hurts their feelings if a kid is upset. Don’t we know how much she cares? Don’t we know that she’d never do anything to hurt us? Don’t we want to learn and grow up to be independent?

Sometimes it’s a matter of being expected to accept intensely bad advice as though it’s insight. For instance, getting sent to therapy because you’re not making friends. And being told “We are all friends in this school! You have to give the other kids a chance.” And, if you try to explain otherwise, she patiently and lovingly explains to you why your thinking is distorted and you’ll have lots of friends if you just let yourself try.

Sometimes it’s – crossing a physical line. Touching in a way they have no good reason to be touching. Or touching over the objections of the kid in a way that is in no way justified by therapy goals. Sometimes sexually, sometimes not. Sometimes in ways that are against ethical standards of practice, sometimes not. But intimately, invasively. And if you say no, she patiently, lovingly, explains that you have nothing to be afraid of and that everything is ok. And that if you just trust her, you will have fun and get better. And when her profession has professional training about boundaries and appropriate touch, she thinks or even says “women don’t do that.”

Some male therapists do many of these things too, but there’s a gendered version of it that usually comes from women. And that can cause a problem for people with disabilities who are recovering from this. Most things about trauma and abuse of power are about misogyny in some way. They’re about men hurting women, and taking advantage of power dynamics that favor men to do so. Those descriptions are important because that pattern is common. But it is not the only abuse pattern, and it is not the only gendered abuse pattern.

Female therapists are subjected to misogyny and the power of men just as much as any other women. But they also have tremendous power over people with disabilities, many of whom are deeply dehumanized. The assumption that women have neither the power nor the ability to hurt anyone gets really dangerous really quickly for children with disabilities receiving therapy.

And it also means that people with disabilities often have a different relationship to gender than most nondisabled people. If you’ve been harmed by women over and over and assured that you liked it, it complicates things. If you’re a girl, it can make it hard to see a group of women as a Safe Space, especially if they think the thing making it safe is keeping the men out. If you’re a boy who has been repeatedly harmed by women who believed they were powerless, it can be hard to understand that the gender hierarchies that feminists and others talk about actually do exist. And it complicates things in any number of other ways.

But if you have been hurt by Nice Lady Therapists, you are not alone. If it has affected your relationship to gender, you are not alone. If it has left scars that others say you shouldn’t have because she was nice and meant well, you are not alone.

You don’t have to think someone is nice because she says she is. It’s ok to think that someone is hurting you even if that upsets them. You don’t have to think someone is safe or loving just because they are a woman or a therapist or smiling. Women can be abusive too. In human services, it is common. You are not alone, and it was wrong to treat you that way. The harm done to you was not because of your disability, and it’s not something that you could have fixed by being more cooperative or working harder or having a better attitude.  It’s not your fault, and it’s not because of anything wrong with you. And it’s not your fault if it still hurts.

Listening to people who have disability accents

People with certain disabilities often have heavy disability accents. Their speech can sound very different from the way most nondisabled people speak.

People with disabilities that affect communication are often pushed into separate programs, particularly in adulthood. Even when they are in the same classes in the same schools, there isn’t much of an expectation that any peers listen to them. This was even more true a generation ago. As a result, most people without disabilities are lousy at understanding people with disability accents, and don’t understand that this is a glaring hole in their social skills.

Many unskilled people tend to maybe ask people with disability accents to repeat themselves once, and then they get frustrated and start ignoring them. Sometimes they pretend to understand, and smile and nod rather than actually listening. Sometimes they hang up on them. Sometimes they pass them off to another person, who also doesn’t bother to actually listen. Sometimes they hang up. If they are medical workers, sometimes they write on a chart that someone is impossible to understand or has no communication (particularly if that person also has an intellectual disability.)

Do not be this person. If you can’t understand someone with a disability accent, the problem is your skills, not their voice. (If you have a receptive language disability that prevents you from learning to understand accents, then it’s no one’s fault and you need an interpreter to communicate. Neither their voice nor your brain is wrong. In that situation, the skill you need to develop is finding an interpreter.)

If you listen, and make it clear that you are listening, you will learn to understand, and you will be able to communicate successfully with more people.

An important phrase for this is “I’m having trouble understanding what you’re saying, but I care what you are saying.”

Make sure it’s true, and keep listening. The more you listen, the easier it will be to understand. Understanding . And practice. You get better with practice.

Too many people are ignored because others can’t be bothered to understand their accents. You can make this better by listening (and by insisting that people you supervise listen.)

Autism language politics and history

Some people emphatically prefer to be called people with autism. Others get very offended. Some people emphatically prefer to be called autistic people. Others get very offended. There are reasons for all of that.

They have to do with the history of the intellectual and developmental disability community, the autism parent community, and the specific autistic self advocacy community.

For intellectual and developmental disability:

  • Most self advocates have a very strong preference for person-first language
  • Person-first language in this concept means “I am a PERSON, and I am not going to allow you to treat me as a disability case study, nor am I going to tolerate your diagnostic overshadowing.”

Autism is a developmental disability. There is a highly visible and destructive community of parents who consider themselves to be afflicted with their child’s autism. There is an autistic self advocacy community that developed in part specifically due to the need to counteract the harm being done by autism parents. The language someone prefers will often depend on which of these facts seems most important at a given time.

Regarding developmental disability.

  • Folks who are primarily involved in the IDD self advocacy community usually prefer to be called people with autism
  • This is for the same reasons people with any sort of developmental disability usually prefer person first language
  • In that context, “person with autism” means “I am a PERSON, and you are not going to treat me like an autistic specimen.”

Regarding the destructive autism parent community:

  • This parent community pushes the agenda of parents who believe that their child’s autism is a horrible tragedy that befell their parents and family
  • They call themselves the autism community, but they consistently refuse to include or listen to autistic self advocates (especially adult self advocates). They only care about neurotypical parent perspectives (and only from parents who think autism is horrifying)
  • They promote things like intense behavioral therapy for young children, institutionalization, group homes, sheltered workshops and genetic research aimed at developing prenatal testing. They do not listen to autistic self advocates who object to these things.
  • They don’t care about the priorities of autistic self advocates. They do not do any work on issues such as self-directed adult services, enforcing the Olmstead mandate to provide services in the community rather than institutions, or research into skills for listening to people whose communication is atypical
  • These parents have an emphatic preference for person first language. They say “people with autism.”
  • What they mean by this is “Autism is NOT a part of who my child is, it’s an evil brain slug attached to their head, and I want to remove it at all costs.”

There is also an autistic self advocacy community. It developed in significant part to counteract the harm done by the autism parent community:

  • A lot of the agenda of the autistic self advocacy community is the same as the IDD community and pursued in cooperation with the IDD community
  • But there is also a lot of work that’s specifically about countering the harm that has been done by the autism parent community
  • Much of the worst harm done by the parent community comes from the cultural consensus that autism is like an evil brain slug, and that any amount of brutality is a good thing if it might mean that the slug shrinks or dies
  • For this reason, participants in the autistic self advocacy community generally have a very strong objection to person first language
  • They call themselves autistic or Autistic.
  • In this context, “autistic person” means “Autism is part of who I am. I’m ok. Stop trying to get me to hate myself. You do not need to remove autism to make me into a full person. We are already people. Stop physically and emotionally mutilating people in the name of treatment.”

Neither set of self advocates are wrong. Both positions are legitimate and important to be aware of. In order to know what someone means by their language choices, you have to consider the context.

An addition from Mel Baggs:

And there’s also an autistic self-advocacy community that is separate from the DD community and also separate from what most people call “the autistic self-advocacy community”.  That self-advocacy community is heavily affiliated with a parent community that also prefers person-first language.  In many cases, people in that community prefer “person with autism” both because of the history of their community, but also because for them being called “autistic” has always meant “you are nothing but your autism and you are nothing but a walking collection of symptoms”.  Which is a much more common experience for people in that community, because they tend to be people who were considered low-functioning for their entire lives.  AutCom — as originally constituted, not as recently-blended — is a good example of such a community, so are any communities that are largely made up of FC users.

Restraint is violent

In what cases is it okay to restrain a kid? Is it okay to pin a kid on the floor if they try to hit you or throw something at you?
realsocialskills said:
I’m guessing that you are not a police officer or emergency responder, and that you’re asking this in the context of either parenting, childcare, or education.
In those settings, it is never ok. (Edited to add: it’s never ok in the context of mental health treatment either.) Sometimes it’s the least bad response when things go very badly wrong, but it’s never ok, and it can’t be part of someone’s plan.
I asked a friend who has more experience than I do caring for disabled children (I’m assuming the kids in this scenario are disabled because people generally assume as a matter of course that it’s not ok to treat nondisabled children this way), and she said this:
Sometimes mistakes are made and situations escalate to a point where a restraint is the least harmful option. That doesn’t mean it’s not harmful. That doesn’t mean it’s okay. When that happens, it is really important to acknowledge the harm that has transpired and to go back over the incident and events leading up to it and figure out what went wrong and how we can prevent it happening again. (quote ends here)
In the same way that, if a kid pinned another kid to the floor, you’d consider that unacceptable and plan to make sure it doesn’t happen again. It’s even more serious when an adult does that.
It is never ok to put restraint into someone’s care plan. It is never ok to see it as a solution. Restraint is a failure, not a solution.
Restraining someone is an act of physical violence. Pinning someone to the floor is a particularly invasive kind of physical violence. It’s a brutal  and physically dangerous act.
Violence against kids counts as violence. Violence against people who can’t talk counts as violence. Violence against people who are physically aggressive counts as violence.
It is never ok to restrain someone as a punishment. Or a consequence. Or to teach them a lesson. Or to prevent them from getting away with something. Or to send the message that their actions are unacceptable. Or to make them calm down. Or anything remotely like that.
If you’re coming here looking for absolution, I’m not giving it to you. If you’ve pinned someone to the floor and you’re wondering if it was ok, no, it wasn’t, and you need to figure out a way to solve the problem so that you don’t do that again. It doesn’t mean you’re a terrible person or incapable of supporting the children in your care, but it does mean there’s a problem and you need to find a better solution.
If you’re a teenager or a kid, and an adult responsible for taking care of you pinned you to the floor and you’re trying to figure out if it was ok, no, it wasn’t. I’m sorry that happened to you. It shouldn’t have. No one should do that to you. No matter what you did, that wasn’t ok. If you’re violent and you hurt other kids or adults, that’s a problem you need to work on solving, but it doesn’t mean it’s ok for adults to pin you to the floor. They should be finding better ways to help you.
For more information, check out Stop Hurting Kids: Join the campaign to end restraint and seclusion abuse in schools. In particular, this fact sheet about restraint and seclusion is a good place to start.