You can't fight stigma by making disability unspeakable

I’ve noticed that a lot of well-meaning people try to fight disability stigma by making disability unspeakable.

The logic seems to be like this:

  • They notice that when people are seen as disabled, they are respected less. 
  • They call this stigma, and think of stigma as a very bad problem. 
  • They then try to figure out how to make stigma go away so that people will be respected more.
  • They think that if no one was seen as disabled, there would be no stigma.
  • They try to get people to pretend that disability doesn’t exist.
  • They expect this to somehow improve the lives of people with disabilities. (On the grounds that if everyone ignores disability, there will be no disability stigma.)

This approach doesn’t work. Disability exists, whether or not anyone is willing to acknowledge it. When we try to fight stigma by ignoring disability, we send the message that disability is unacceptable.

When people are made to pretend that their disability does not exist, they learn that basic things about their body are unspeakable. When people are made to pretend someone else’s disability doesn’t exist, they learn that if they stopped ignoring basic things about them, it would be impossible to keep respecting them. These are not good lessons.

If you need to pretend someone isn’t disabled in order to respect them, you’re not really respecting them. You’re giving imaginary respect to an imaginary nondisabled person. People with disabilities deserve better. People with disabilities don’t need fake respect handed out as a consolation prize. People with disabilities need to be treated with real respect, as the people they really are.

If we want to fight stigma, we have to get real. Disability exists, and pretending that it doesn’t just makes the problem worse. Stigma is not caused by noticing disability; stigma is caused by ableist attitudes towards disability. It is ok to be disabled, it is not ok to be ableist, and it is upon all of us to build a culture that understands that.

Acceptance makes responsibility possible

Sometimes disability and responsibility are seen as opposites. This is destructive, and it’s related to a taboo against acknowledging disability and ability at the same time.

Within this taboo, either we’re seen as basically just like everyone else, or we’re seen as basically unable to do anything that matters. This makes it very difficult to develop a sense of what it means to be responsible as a disabled person.

People who want us to see ourselves as capable often teach us to try and ignore our bodies, so that we can pretend that we’re really just like everyone else. This teaches us to pretend to have abilities we don’t have — and to make promises that we can’t keep. 

On the other hand, we’re often taught that being disabled means that our promises don’t count for anything. That it’s just a symbolic gesture, and that no one is ever counting on us in a real way. That everything we do is just practice, or symbolic, or someone else’s charitable attempt to include us. (Eg: a kid with a disability may be put on a baseball team nominally, expected to attend practices and games, never taught to actually play, and given the chance to hit a fake home run late in the season as a feel good event.) This can make it really, really hard to learn that it matters what we do.

There’s nothing inevitable about this. Disability doesn’t have to mean magical thinking and constant broken promises, and it doesn’t have to mean a never-ending stream of fake tasks. It can mean understanding the bodies we live in, and the minds we have. It can mean taking all of that into account when we decide what to do, and when we make promises. We can take real responsibility and do things that matter.

You're not taking anything away from autistics by suspecting that you're one of us

Anonymous said to realsocialskills:

I’m 22, queer, female, and I’ve been thinking for a while that I might have Aspergers. But I don’t know if people/doctors would believe me. And I’m also worried that they shouldn’t. It feels like the answer, like it provides a lot of those ‘oh that makes sense now’ kinda moments for me, but I’m also worried that I’m just trying to excuse my behavior by co-opting someone elses real struggle. Does that make sense? I’m probably just a horrible person and bugging you aren’t I? I’m sorry.

realsocialskills said:

I can’t tell you if you’re autistic or not, or whether your reasons for thinking you’re autistic are plausible. I have no way of evaluating that. Here’s what I do know:

There is nothing wrong with suspecting that you might be autistic (even if it turns out you’re not.) It’s ok to find autistic experiences relatable (even if you’re not autistic). It’s ok to find coping mechanisms or other strategies created by autistic people helpful (even if it turns out that you’re not autistic.)

There are a lot of people who find autistic experiences relatable, for all kinds of reasons. (There’s a lot of overlap between experiences related to autism, depression, trauma responses, being trans, being LGBTQ in general, ADHD, epilepsy, physical disability, social anxiety and any number of other things. And a lot of people have more than one thing.) Point being, if you’re seeing yourself in descriptions of autistic experiences, it’s fairly likely that there’s a good reason whether or not it turns out that you’re autistic.

Regarding making excuses: I think that understanding your abilities and limitations well is actually an important part of taking responsibility. If you have a sense of what you can and can’t do, and what support you need to do things, it becomes a lot easier to make responsible choices.

I don’t know if you’re autistic or not. If you think you have reason to suspect that you are, I think the responsible thing to do is to take the possibility seriously. Whether or not it turns out that autism is the explanation you’re looking for, I think that you will learn things about yourself that allow you to make better choices and take responsibility more effectively.

And while you’re investigating possible disabilities, I think it’s really important not to lose sight of the fact that you’re capable, and that your abilities matter too. One point of investigating disability is to figure out what your needs are, and to use that knowledge to figure out better and more effective ways of doing things. Acceptance is the opposite of giving up.

Regarding making excuses: Nothing you said gives me any reason to believe that you are making excuses; I’d guess that you are not. This section is to illustrate some what it looks like when people do make excuses. For instance, giving yourself license to be intentionally cruel would be making excuses. (For instance, by insulting people on purpose and saying you can’t help it because you’re autistic.) Learning to accept your needs and learning to be considerate of others would not be making excuses. (For example, by figuring out that you have a language disability that sometimes causes you to say unintentionally insulting things. And then learning how to effectively convey respect for people in ways that make it clear that you don’t mean your inadvertent insults.)

That said, even if you are making excuses, it doesn’t mean that you’re not autistic or that it’s wrong for you to want help. Making excuses is a human error; a lot of us (disabled or not) fall into it from time to time. You don’t have to wait to be perfect before it’s ok to try to understand yourself and get help; if you did, no one would meet that bar. You’re allowed to be a flawed human being; disability doesn’t come with a halo.

If you’re trying to get a realistic sense of what you can and can’t do, and what your needs are, that’s the opposite of making excuses. It’s actually crucially important for taking responsibility.

Also, I think it’s very common for people who grew up struggling in ways that went unrecognized to doubt that their experiences are real. I’ve felt that way, and I know a lot of other people who have too. Feeling shame and doubt isn’t evidence that you’re doing something awful; it’s a normal feeling that a lot of people have in this process.

tl;dr A lot of people who think they might be autistic feel a lot of shame and worry that they’re somehow harming others by suspecting this, or that they’re just making horrible excuses. That feeling is normal and common. If you have reason to think you’re autistic, investigating the possibility is a responsible thing to do. You’re not taking anything away from others. It’s ok to want to understand your struggles and figure out what your needs are. Scroll up for more thoughts.

Sabotage disguised as acceptance

Acceptance is important. It’s one of the most crucial skills disabled people can develop. We have to learn to see ourselves as we are, and accurately

Acceptence is constantly, constantly undermined from a number of directions.

One of the most insidious things undermining acceptance is contact with people who speak in positive terms, but don’t believe in our abilities or agency even a little.

They will often call what they are doing acceptance, while at the same time doing everything in their power to convince us that disability means that we are fundamentally incapable of doing anything, that we shouldn’t try, and that we should just let them take over and run our lives.

This is fairly common in a certain kind of toxic parent community. (It’s also a common abuse dynamic in relationships between adults). Here’s part of the parent version:

Sometimes when parents say “My child is perfect the way she is,” what they really mean is “I don’t want my child to gain any skills that will enable her to separate from me, and I’m going to make sure she doesn’t.”

Some parents like this will give their disabled child anything but respect. For instance:

  • Some parents will give nonverbal children anything they point to
  • And will supply a lot of whatever their child expresses interest in
  • But no matter how old their child gets, they never stop treating them like a toddler. Even when they’re well into adulthood
  • And they don’t teach them about the world
  • Or talk to them about anything complex
  • Or try to find out what they think about anything more complicated than which objects they like
  • And won’t do anything to give them access to more complex communication
  • They will say that there’s no need for that, because their connection with their child is so deep that they understand everything they mean
  • That’s not true. Loving your child doesn’t make you a mindreader. Here’s a good post by a parent on the damage that approach does.
  • Even if parents infallibly knew what their child was thinking; kids need to be able to communicate with people other than their own parent
  • (Particularly since most children outlive their parents, and kids who can only communicate with their parents eventually end up unable to communicate with anyone)

Some parents will do anything for their disabled child — so long as it doesn’t run the risk of their child becoming more autonomous and less dependent on them. Eg:

  • Some parents prefer to carry disabled kids who are capable of learning how to walk
  • Some parents will put a lot of effort into making sure they’re always available to push their kid in an adaptive stroller, but adamantly refuse to get them a wheelchair they can propel themselves
  • Some parents will spend massive amounts of time putting their kids into complex outfits daily — and refuse to buy them any clothing that they can put on and take off independently

Some parents will allow their disabled child to do anything — except show consideration for others or develop reciprocal relationships not orchestrated by parent’s script. Eg:

  • They’ll allow their kid to boss people around at home, but they won’t let them go to any other kid’s house, ever, claiming that it’s somehow unsafe (even if their kid doesn’t have complex medical needs)
  • (Parents who do this often also do things like recruit children to come over and act like friends according to the parent’s script. For instance, by playing a game with their child and letting them win.)
  • Sometimes children who get overloaded hit people, are embarrassed, and want to apologize for hitting. Parents in this mindset tell them that it’s ok, that they couldn’t help it, and that they shouldn’t worry about it and definitely shouldn’t apologize.

Doing this kind of thing is not disability acceptance, even if the one doing it describes everything in flowery language. Sabotaging a child’s independence is not acceptance. Forcing a child into dependency is not acceptance. Destroying a child’s ability to engage in reciprocal relationships is not acceptance. Treating an adult as a child is not acceptance. Treating a disabled adult as a puppy or a plant is not love. That kind of stuff is just ableism.

People who say things like that aren’t accepting us as people. They’re saying that we’re not full people, and that they get spiritual satisfaction from having unpeople around.

We’re people. All the way down. Real acceptance is about seeing us as full human beings, acknowledging the impact disability has on us, and committing to finding ways to accommodate disability.

tl;dr Treating disabled children and adults like puppies or toys is never ok, even if you call it acceptance and positivity.

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

tl;dr 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.

I have a friend with depression who frequently cancels plans or doesn’t message me back, and even though I know it’s because she has a limited amount of emotional energy and not because she doesn’t care about me, I end up feeling really neglected and hurt every time. We’ve talked about it and she knows how I feel, but it isn’t getting better. I keep thinking I might have to just stop talking to her to protect myself from getting hurt, but that feels mean. What do you think I should do?
realsocialskills said:
I can’t tell you whether or not you should keep talking to this person, that’s a deeply personal decision.
The first thing I want to say is that it’s ok to decide you don’t want to spend time around someone who regularly hurts you, even if the reasons they hurt you aren’t entirely their fault. Your needs matter.
That said, I think part of the problem might be that you are expecting things from your friend that aren’t possible right now, and that it might be possible to salvage the friendship by changing your expectations. 
Here’s a dynamic that may or may not resemble what’s going on with you, between friends I’ll call Cathy and Debra:
  • Cathy and Debra are in a culture in which the assumption about how friendship works is that Good Friends regularly make and keep plans, and answer each other’s messages in a timely manner
  • Debra has major depression, and isn’t currently capable of doing either of those things
  • Cathy wants to think of Debra as a Good Friend and give her the benefit of the doubt, so she keeps trying to make plans, and sends messages assuming that she will get prompt replies
  • Debra wants to think of herself as a Good Friend, so she keeps trying to make plans even though she’s not actually capable of keeping htem
  • Debra can’t actually keep most of the plans or reply to most of the messages, so she doesn’t
  • This hurts Cathy’s feelings, because she’s counting on Debra to act like a good friend, and Debra is doing things that signal that she doesn’t really care about or respect Cathy
  • Neither of them talk about Debra’s actual capabilities, or make plans taking them into account
  • They keep assuming that, somehow, being Good Friends and trying will solve the problem
  • And meanwhile, it doesn’t, and Cathy gets more and more hurt

If this is what’s going on, I think that making stuff better has to start from the assumption that, no matter how much your friend cares about you, she’s not currently capable of doing some of the things that you currently think of as central to being a good friend. If depression means she can’t do those things right now, no amount of talking about how much this hurts you is going to fix that. If those kinds of conversations gave depressed people more abilities, no one would be depressed. 

That might mean that you can’t be very friendly to one another right now, or it might mean that your understanding of how friendship works needs to change to account for her capabilities. I don’t know which answer is the right one for you. Both are possible. 

But, as far as shifting understandings and assumptions:

Regarding messages:

  • I think your current assumption might be that replies are more-or-less automatic
  • And that if someone doesn’t reply, it’s because they’re actively withholding a reply
  • Which is the case in some kinds of relationships, but it’s probably not what’s going on when your friend doesn’t reply
  • Replies are probably really, really hard for your friend right now, and she’s probably often not up to making them
  • So, with this friend, it might make more sense to assume that not replying is the default, and that sending a reply is something hard that she does when she’s up to it
  • What if when you sent your friend messages, you assumed something along the lines of “My friend will probably like getting this message, but she will probably not be able to reply to it this time”?

Regarding plans:

  • I think it is not a good idea to keep making plans that you will be upset if you friend breaks
  • If she’s not capable of keeping plans reliably, then making them and expecting them to be kept just hurts both of you.
  • So what if you didn’t make plans, and instead only did things spontaneously on rare occasions on which she was up to replying immediately to suggestions?
  • Or what if you made plans with the assumption that she might not be able to keep them, and found a way to be ok with that?
  • Eg: inviting your friend to a group activity, and still going and having a good time with the other people if she cancelled?
  • Or making plans to go to a movie, then going by yourself if she wasn’t up to it?
  • Or planning to go over to her house, but assuming that there was a good chance she wouldn’t actually be up to it, and not making that plan often enough that it would prevent you from doing other things that are important to you?

All of that said, I don’t know what you should do, and I’m not telling you that you have to keep talking to this person. I’m saying that, if you do want to try to keep interacting with them, I think this might be an approach that could make it possible to do so and still feel ok. But it might not be. What I have suggested is not going to work for everyone, and that’s ok. It does work sometimes for some people, though.

Any of y'all have other suggestions?