disability acceptance

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.

Struggling more with disability in the aftermath of the election

Everything gets harder under extreme stress. The aftermath of the election is an extremely stressful situation, and a lot of people are struggling.

This is not a normal situation. Donald Trump is almost certainly going to become President in January. He has promised to do awful things. His actions since Election Day have not been reassuring. This is a terrifying situation. For many people, it’s life threatening. It’s hard to function in a situation like this.

If you have a disability, this may be affecting you differently than it’s affecting nondisabled people. Most people are having trouble right now; most disabled people are having additional disability-related trouble.

If you have a mobility disability, moving might be harder right now. If you have a speech disability, speaking might be harder or impossible right now. If you have sensory issues, some sensory input you are normally able to deal with might be intolerably painful at the moment. If you have an eating disorder, it might be harder to control it right now. If you have seizures or migraines or other neurological problems, your threshold might be lowered. If you have trauma-related triggers, they might be harder to tolerate, or you might be more hypervigilant than usual. If you are hard of hearing, it might be much harder to understand spoken conversations right now. And so on.

Things you’re used to being able to do might be harder or impossible right now. Coping mechanisms you’re used to relying on might not be working. This is true for everyone, disabled or not. But with disability, we’re also having functioning problems that most people around us aren’t having. That can in itself be difficult to cope with.

For many of us, self acceptance as disabled people is a struggle. Under extreme stress, acceptance can be even harder. Acceptance is a skill just like everything else — and under extreme stress, many of us are dramatically more impaired. Acceptance gets harder, at the same time that there is suddenly more to accept. But you’re still worthy of acceptance. You’re not broken. It’s just hard.

Being disabled isn’t a failure. Being more impaired in a time of extreme stress isn’t a character flaw. You’re not alone in struggling. Nondisabled people are also more impaired right now; and they also can’t make it go away through sheer force of will. The particular things you can and can’t do may be different — because you have a disability, and disability matters.

Tl;dr The aftermath of the election is extremely stressful. This kind of stress makes everything harder. If you have a disability, some of your coping skills might not be working very well right now. Acceptance may also feel a lot harder. It’s worth remembering that it’s normal to struggle in situations like this — and it’s not your fault that disability matters now. Your body is not a character flaw.

When professionals assume that parents of disabled kids see ghosts

In the special needs service provision community, there is a strongly held narrative about what happens when a kid turns out to be disabled. This narrative causes a lot of problems.

According to this narrative:

  • Professionals believe that parents have a strong emotional attachment to the typically developing kid they were expecting. 
  • They are usually in denial even about obvious signs of disability, and will hold on to their fantasy for as long as possible. 
  • At some point, the parents are forced to confront their child’s disability.
  • They lose their fantasy of the child they expected, and this is emotionally devastating. 
  • In order to move on, they have to mourn the loss of the child they expected and the life they expected.
  • Parents need emotional validation and help working through that.
  • All of this is very widely believed, and I think this model causes a lot of problems.

I think the grief model is a problem on several levels:

When parents are grieving for the child they expected, it’s really hard on the child they already have:

  • Children want adults in their lives to see them, approve of them, and love them.
  • When parents are seeing ghosts, they’re not seeing their real child.
  • Children can tell when adults in their lives are looking past them. It hurts. 
  • When parents are mourning for the child they expected, they are disappointed by the child they actually have.
  • Children can tell when adults in their lives are profoundly disappointed in them. It hurts.
  • And it especially hurts when the child has no control over the things that are disappointing their parents.
  • While parents struggle to accept their children as they are, their children struggle to cope with being parented by people who do not yet find them acceptable.
  • That hurts. And it leaves scars.

Kids need support in navigating this, and they don’t often get it:

  • There is often a tendency to pretend that kids don’t know.
  • But disabled kids aren’t a separate species. They’re kids, and kids are almost always very sensitive to how adults in their lives feel about them.
  • Kids need people in their lives who see them, and not ghosts. 
  • Kids need people in their lives who can accept and value them as they are.
  • Sometimes that can’t be their parents. Or can’t (yet) be their parents.
  • But it needs to be someone. (And their parents need to understand that their attitude towards their child affects their child)
  • If you work with kids in any capacity, it is likely that this person needs to be you sometimes.
  • Looking at the real child and seeing a person matters. Seeing them and not a ghost of someone you expected matters. Making it clear that you’re not disappointed in them matters. 
  • If you can do that for kids you work with, it can prevent a lot of pain. (And can likely help their parents to come to a point of acceptance sooner.)

Further, not all parents actually feel this way:

  • The professional narrative about grief and mourning does not accurately describe all parents.
  • Parents of disabled kids have all kinds of feelings about their kids for all kinds of reasons.
  • Not all of these feelings are negative.
  • Even when parents have negative feelings, they’re not always grief. 
  • Sometimes parents feel overwhelmed and confused about how to support their child.
  • (Or worried about how to afford the things their child needs).
  • (Or repulsed by things professionals are telling them to do to their children as therapy.)
  • Sometimes parents feel ashamed about not having noticed sooner.
  • Sometimes parents feel concerned that they may have caused their child’s disability. 
  • Or any number of things.
  • Not all parent feelings are grief, and the full reality needs to be acknowledged

Parents are sometimes pressured into mourning when they weren’t already grieving:

  • The grief and mourning narrative is strong and pervasive. 
  • Parents are often expected to describe everything they’re feeling as grief.
  • Parents are often not given any support in working through the other feelings and doubts they are having. 
  • This can result in parents being pushed into a mourning process that wasn’t actually necessary for them. 
  • It is very damaging to both parents and children when this happens.
  • It is not good to grieve for the living. When it’s avoidable, it should be avoided.
  • It’s important to be careful to avoid pushing parents into adopting a grief narrative unnecessarily. 
  • (Sometimes it’s not avoidable, for reasons that aren’t anyone’s fault. But it’s often more avoidable than people realize.)

Tl;dr There is a pervasive professional narrative that says parents of disabled kids need to mourn for the child they were expecting before they can accept their real child. This isn’t always true, and parents are sometimes pressured into feeling and mourning through grief that they otherwise would not have experienced. When parents *do* mourn for their living children, that is emotionally devastating for the kids. Parents and kids both need much better support in navigating the disability acceptance process.

For another perspective on this, see Jim Sinclair’s classic article “Don’t Mourn For Us” (written about autism specifically.

Open letter to disability professionals

Dear disability professionals,

I’m not sure why, but I keep encountering disability professionals who try to deny that disability exists, or to downplay its importance.

It’s so extreme that disability professionals often try to convince people with disabilities that we are just like everybody else. Even when our differences are the reason that you have a job.

We are not just like everyone else. We are alike in that we are all human, with the same basic needs and capacities that go along with humanity. We are also different, in that we have disabilities and most people do not.

Disability exists. Disability is important. People with disabilities are different from most people people in ways that matter. And we need those differences to be speakable.

Our bodies are different. We can’t make this go away by smiling, being brave, and trying hard.

The differences in our bodies matter. Most people can do things that are physically impossible for us. Most people can do some things easily that are excruciatingly difficult for us. The specifics of which things these are depend on the person and the disability. They always exist. That’s what disability means, it means having a different kind of body, a body that can’t do certain kinds of things easily or at all.

For everyone, with and without disabilities, understanding the limits of what our bodies can do is a key life skill. Everyone’s safety depends on understanding that they do not have wings, and that they can’t fly. My safety also depends on understanding that I have impaired vision, motor coordination, and executive functioning. Understanding these things means I have chosen not to drive, and that I have found adaptive strategies that enable me to cook safely.

From my perspective, the fact that I don’t concentrate hard and try to drive isn’t so different from the fact that I don’t flap my wings and try to fly. All I’m doing is acknowledging physical reality, and making choices that fit with my understanding of reality. Some of the physical limitations on what my body can do are the normal limits that apply to all human bodies. Other physical limitations come from my disability. They’re all just physical facts, they’re all just things I need to take into account when I make decisions. 

But as a person with a disability, I learned young that only some limitations are ok to talk about. If I say “I can’t fly”, no one contradicts me. If I say “I can’t catch”, people say “just keep trying”. Both are physically impossible for me. Trying hard will not make either possible. Neither will being brave, smiling, or believing in myself.

For some reason, many disability professionals seem to believe that honesty about our limitations will somehow destroy our self esteem. Actually, the opposite is the case. They want us to believe that if we just smile and keep trying, we can do anything that we put our minds to. But it’s a lie, and we get hurt badly when we believe it.

When professionals refuse to accept our limitations, they force us to attempt impossible tasks over and over. There is nothing positive about this experience. We try and fail, and we watch others our age succeed at the same tasks. If we believe that we can do whatever we put our minds to, then we feel like it’s our fault for not trying hard enough.

It hurts when people yell at us for failing, and it hurts when people plaster on smiles and urge us to smile and keep trying. “Come on, you can do it!” doesn’t sound like encouragement when you know that you will fail. It feels like being told that you’re somehow screwing up on purpose, and that if you would just decide to be a better person, you’d suddenly be about to do it. This kind of thing can go on for years, and it leaves scars. We often come to feel like we are unworthy people, and that there’s something deeply flawed about who we are. 

It’s very, very important that people with disabilities understand that we are disabled. We need to know that our bodies are different, and that some things that are possible for most other people aren’t possible for us. We can’t stop being disabled through an act of will. Our bodies limit us. That is not a moral failing. It’s just a fact of physical reality. And it needs to be speakable.

Our bodies and our disabilities are nothing to be ashamed of.  We don’t have to be different to be good enough. We don’t have to be nondisabled to do things that matter. We don’t have to do impossible things to be worthy of love and respect. We’re people, and who we are is ok.

And for professionals - please understand that when you refuse to acknowledge disability, you are teaching people with disabilities to be ashamed of themselves. This is probably not your intention, but it’s an inevitable consequence of making disability unspeakable.

It is much better to tell the truth. It is much better to support us in understanding who we really are, than to push us to believe in an impossible dream. I could dream of flying or playing baseball, but it wouldn’t get me anywhere. By living in the real world and working with the body I actually have, I can do things that matter. And so can all of your clients. There is no need for silence, evasion, or shame. Disability is important, and it’s much easier to live with when we can face it honestly.

Disability does not end where values begin

One of the most painful aspects of disability is that it can interfere with treating people the way we’d like to treat them, and doing what we’d like to do for them.

Disability makes some things hard, and other things impossible. Often, we have values that say it’s important to do the thing anyway. This does not actually make it possible to do the thing. Caring about others doesn’t make disability go away. Accepting and accommodating our limitations works a lot better. We can only do things that are possible, with the brains and bodies we actually have.

For instance, body language:

  • People communicate a lot of important things through body language
  • Some people can’t see well enough to understand body language
  • Others have insurmountable cognitive barriers to understanding body language
  • It’s important to listen to what people are saying. That doesn’t make it possible for everyone to understand body language.

Understanding speech:

  • Most people communicate a lot of important things through speech
  • Some people can’t understand speech
  • (Either because they can’t hear well enough, or for cognitive reasons)
  • It’s important to listen to people. That doesn’t make it possible for everyone to understand speech

Text communication:

  • There are often competing access needs in text communication
  • Some people can’t read walls of text, and need whitepsace
  • Some people aren’t capable of putting in line breaks (or aren’t reliably capable of doing so)
  • Some people need simple language to understand things
  • Others are incapable of changing their language use, and have to use big words in order to communicate
  • The importance of listening doesn’t make it possible for people to understand every kind of writing.
  • The importance of communicating in a way people can understand doesn’t make it possible for everyone to communicate in every way people need
  • Sometimes there needs to be an interpreter

Inaccessible buildings:

  • Some important meetings take place in inaccessible buildings
  • Some people can’t climb stairs (or can’t do so reliably)
  • The importance of the meeting doesn’t make it possible to climb the stairs
  • Even if someone you care about really, really needs your help with what’s going on at that meeting

Outdoor events:

  • Some people can’t be outside for extended periods safely
  • (For any number of reasons)
  • This is just as true when there’s an important protest. Caring about the issue doesn’t make being outside any safer.
  • Or when there’s a wedding or something. Caring about friends and family doesn’t make it any safer to be outside

Recognizing people:

  • Most people want people they know to recognize their face and remember their name
  • When people aren’t recognized, they often feel like no one cares about them
  • Some people can’t recognize faces
  • Some people can’t remember names
  • Understanding the importance of recognizing names/faces does not make it possible for everyone

Intermittent abilities:

  • Some people can do certain things only some of the time
  • They may be able to push really hard and do it in an emergency
  • Or it might fluctuate in ways they have no control over
  • That doesn’t mean they could do it reliably.
  • Caring about something doesn’t make it possible to do it all of the time.
  • Disability is real even when it’s intermittent.

There are any number of other examples. When something is physically or cognitively impossible, it’s still impossible when it’s important. When it’s dangerous, it’s still dangerous when it’s important. Caring about other people doesn’t make disability go away.

Whatever we do, we have to do as who we are.

tl;dr Disability makes some things hard, and other things impossible. Often, we have values that say it’s important to do the thing anyway. This does not actually make it possible to do the thing. Caring about others doesn’t make disability go away. Accepting and accommodating our limitations works a lot better. We can only do things that are possible, with the brains and bodies we actually have.

Disability acceptance for partners

Anonymous said to :

Hi, my boyfriend is autistic on the Aspergers spectrum and I don’t know what to do when he’s overloaded. I just really want to help him calm down again.

Is there any advice you can give me?

realsocialskills said:

There’s a lot of things that could be going on. I don’t know you or your boyfriend, so I can’t really tell you much that’s specific to your situation.

I think it’s possible that you may be taking too much responsibility for your boyfriend’s overload. If so, it would be better for both of you if you let it go a bit.

There’s a narrative in the media that’s common, and destructive, that goes like this:

  • Disabled person (usually a man) can’t function
  • He meets an amazing person (usually a woman), and they get involved romantically
  • Through the transformative power of love, he is healed
  • Then either he stops being disabled or his attitude changes in a way that means disability no longer matters in any significant way

Sometimes this goes along with another trope, “the only disability in life is a bad attitude”.

  • People who buy into that trope believe that disability only matters if they let it matter.
  • And they disability can be ~overcome~ by positive thinking and not being bitter.

For disabled people, this narrative pressures us to pretend that disability doesn’t matter. Or to make it stop mattering through sheer force of will. For people who love us, it creates pressure to fix everything and make disability irrelevant through the power of love and support. In real life, neither of those things work.

In real life, disability matters no matter what people think about it and no matter how much others love them. Having a good attitude can make life better; it can’t make disability irrelevant. Love can make life better; it can’t make disability irrelevant either. Disability goes deep, and it affects a lot of areas of life. And sometimes things are hard.

Part of being a good partner to an autistic person is accepting that autism is going to matter. No matter how wonderful you are, you’re not going to be able to stop autism from mattering.

I don’t know what’s going on with your boyfriend and his overload. I do know that, for many autistic people, overload is an inevitable fact of life. Sometimes, it’s the price of admission for doing certain things we care about. Overload is not always something you can prevent or fix. Sometimes the decisions get complicated.

Your boyfriend is the one who is responsible for figuring out how he wants to approach overload. He is the one who needs to decide which risks are worth taking, which are worth avoiding, and how he wants to handle it when he is overloaded. You can’t protect him from this.

You might be able to help with some of it some of the time. Many autistic people like certain kinds of support in dealing with overload, for instance:

  • Having someone else pay attention to signs of imminent overload and point them out
  • Being reminded that leaving is an option
  • Being reminded that it’s ok to be autistic in public and that they can stay if they want
  • Help leaving an overloading place
  • Being left alone and having someone else run interference to keep other people from trying to intervene
  • Having a stim toy handed to them
  • Knowing that people they’re with aren’t going to try to stop the overload and will leave them alone
  • Water
  • Help finding a quiet place to go
  • Being able to hold someone’s hand
  • And any number of other things

Note that many of these things are mutually exclusive. Autistic people have wildly different needs and preferences around handling overload. I don’t know what your boyfriend needs or wants; that’s for him to determine.

The only way to find out what your boyfriend wants you to do when he gets overloaded is to ask him, and to listen to what he says.

  • It’s worth having this conversation when he’s not overloaded and is able to communicate readily.
  • It’s also important to listen to what he says when he’s overloaded, even if it contradicts what he’s said before (unless he told you beforehand not to)
  • The question shouldn’t be “How can I calm you down?”, because that might not be possible or something he wants.
  • The question should be something like “When we’re together and you get overloaded, how do you want me to react?”
  • It’s ok if he doesn’t want to have an intimate discussion about overload, and it’s ok if he doesn’t want your help.
  • But you do need to know what he wants you to do in that situation, and so it’s ok and important to ask.

tl;dr Autism acceptance is important for partners of autistic people too. You can’t fix everything or make autism stop mattering. Sometimes things are going to be hard for us no matter what you do. Whether we want help, and the kind of help we want, varies from person to person. If you want to know, it’s important to ask.

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.

I get where you’re coming from saying all autistic people are disabled, but I’m autistic and don’t consider myself disabled, because I move through the world with no external accommodations. I feel uncomfortable claiming the word disabled and I feel more uncomfortable when people apply it to me without my consent.
realsocialskills said:
Here’s what I mean by saying all autistic people are disabled:
Autistic people, *all* autistic people, have things that they can’t do that almost all neurotypical people can do.
That’s a significant fact. And it doesn’t go away because you’ve arranged your life in a way that works for you. And losing site of that can cause a lot of problems.
To use a personal example:
I have a terrible sense of direction. I absolutely need my iPhone to be able to go anywhere new by myself without allowing an extra hour to get lost. That’s true no matter how simple the route is.
I have, at many points, forgotten that I am disabled in this particular way. In my day-to-day life, I normally stay within a small range of a few very familiar city blocks. So I don’t experience my disability, I don’t notice I am disabled. I even, sometimes, forget that I am impaired in that way. I used to get myself into a lot of trouble assuming that I’d gotten over it.
Similar things happen with executive functioning. I need a lot of cognitive cues to be in place to be able to do things. If they’re there, then I can forget that I have problems doing stuff. Which can cause serious problems if what I need to do shifts and my existing cues don’t work anymore. 
Understanding that I haven’t gotten over disability and I’m not going to get over it helps me to function better. Because whether I notice my disability or not, it’s always there. When I remember and acknowledge that I am disabled it, I can plan to accommodate my disability.
I think this is true of all autistic people, whether or not they identify as disabled.

All autistic people are disabled

All autistic people are disabled.

No matter how well someone passes. No matter what someone has accomplished. No matter how well they speak. Even if they’re married with children.

All autistic people are disabled. And, if you interact with them enough, it will present a practical problem at some point.

And, if you are autistic yourself, you are going to face practical problems associated with it.

And that’s ok. Disability is not a big deal, if you accept and accommodate it.

Going around pretending that it is not so just makes everything harder.

An anti-skill that interferes with friendship

This post is a further response to an ask by someone who identifies as aspie and is struggling to making friends.

Yesterday, I addressed the burden of stigma we face, and how it can make it hard to find people who will treat us well enough to be good friends. Today, I want to start talking about other problems autistic people often have making friends. (Usual standard caveat - if you relate to any of this, it’s fine to use these concepts whether or not you are autistic. Don’t worry about appropriation.)

There are a lot of social problems that autistic people often have beyond other people’s anti-autistic hate. Some of these things are inherently difficult for some of us, and some of them have to do with how we are often taught counterproductive coping strategies.

For instance, a lot of autistic people find it difficult to judge other people’s boundaries and level of interest in interacting (and that’s partly because, as kids, we’re taught that we have to interact with other kids and see them as friends regardless of what we or they want).

Here’s an example of how an autistic impairment and stigma combine to create a relationship problem for some people:

  • One thing that often gets autistic people classified as aspie is having more receptive language problems than expressive language problems
  • People with really good, or good-seeming, expressive language can often cover for the fact that they don’t understand much of what’s going on
  • This allows them, especially as kids, to pass as just socially awkward, or to pass as being too gifted to get along with other kids, or any number of variants on that theme
  • There is often very, very intense pressure on autistic people classified as aspie to cover impairment at all costs and to appear as normal as possible
  • This makes receptive language problems even worse, because it prevents them from getting good feedback on whether they’re understanding anything
  • And sometimes, aspie spaces can make this even worse. Sometimes aspie-oriented communities are centered around helping people to deny that they have language problems, and to say that the rest of the world just communicates wrong
  • (It’s true that the rest of the world needs to work on accommodating people with communication disabilities more - but autistic folks need to acknowledge that they *have* communication disabilities, and a lot of aspie-identified folks like to deny this)
  • Covering up receptive language problems can make friendship really difficult. Friends need to be able to understand each other
  • Which means friends need to be able to admit it and fix it when they *don’t* understand each other

If this sounds like you, it’s likely that getting better at friendship will involve looking more autistic.

More on social problems autistic people often struggle with tomorrow.

“I can’t” is an important phrase

anonymous asked:

… I think it’s more empowering to say “I decided to stop” than to say “I can’t”. It’s OK to stop when there’s still a tiny chance that you might have been able to succeed.

realsocialskills answered

There are different reasons why people decide to stop doing things.

One reason is that they reach the conclusion that they probably aren’t capable of doing the thing. Probably 

That’s different than reaching the conclusion that they don’t want to do it, or that it’s not worth doing, or that they’d rather do something else.

Actually this reminds me of something I’ve seen - often disabled kids who can’t do something will pretend that they’re refusing to do the thing. And that they’re refusing to do the thing on purpose in order to provoke the teachers. When everyone involved thinks that’s what’s happening, things can get really bad really quickly.

(Particularly if the thing is something like a kid going nonverbal and pretending that they’re refusing to speak and are just making animal noises to be rude).

Inability to do things is real, and it’s important for people to know their limits and take them seriously.

Acknowledging limits makes it much more possible to do things than pretending not to have any.

Ignoring reality isn’t empowering.

And it’s legitimate to say “I can’t” when what you mean is “it’s possible that I might technically be able to do it, but it’s risky and dangerous, and I couldn’t function if I took that kind of risk routinely”.

(This is in fact a meaning of “can’t” used by people without disabilities all the time.)

The power of “I can’t”

People will try to tell you that you can do things you can’t do.

It’s hard to insist that no, you can’t do them. Or that you can’t do them safely. Or that you can’t do them without using up all your spoons and losing the capacity to do things that are more important.

They will tell you that this is giving up, or being lazy. They will tell you this with their words and their body language. And by pretending that you have not said anything, and just refusing to take into account your actual abilities.

They will tell you this with hate. They will tell you this with good intentions. They will tell you this as concern trolls and terrified parents. 

Sometimes, in that situation, it’s easy to feel like you aren’t allowed to say no until you’ve run yourself into the ground trying, or until you’ve tried and failed and things have gone badly wrong. Because people won’t believe you, and will put pressure on you in all kinds of ways.

The thing is, they’re wrong, and you don’t have to believe them or comply with their demands.

It helps a lot to be confident in your ability to judge what you can and can’t do. Sometimes you have to say no over and over. 

Knowing ahead of time that something won’t work for you and insisting on planning accordingly isn’t lazy.

It’s being responsible.

Shame is not a cure

So, here’s the thing.

People with disabilities are taught that we’re just lazy. That eventually, if we care enough, we’ll be cured. That we can shame our way out of being disabled. 

This is counterproductive.

If you can accept the way you are, the way your mind works, the way your body works – 

You can figure out how to do things in the way that *actually works for you*.

And you can do a lot more, than if you’re stuck in the mindset of thinking that shame will cure you.

Shame doesn’t create abilities. Self-hatred doesn’t create abilities.

Acceptance creates abilities. Understanding and working with your real configuration rather than against it can greatly expand what you can actually do. Even though there are abilities you will never have. There’s a lot you can do, if you understand and accept yourself as you are.

More about respectful therapy

This applies to both adults and children. Respect is really important.

Some of what this means is:

Understand that people who need therapy are going to have trouble with it sometimes:

  • People who have therapy have it because some things are hard for them. This is normal and should be expected in a therapy context.
  • Being in therapy doesn’t make things easy. It just means someone is getting help learning something
  • Expect that it’s going to be hard for the person you’re teaching to learn the things you are teaching them
  • And sometimes they will have trouble in ways you didn’t anticipate
  • When they are having more trouble than you expect, don’t get angry
  • And don’t make fun of them
  • And don’t accuse them of being lazy or wasting your time
  • And especially, don’t tell them that if they’d just *try*, they’d be able to do it
  • Help them find a way to figure out how to do the thing.
  • This means sometimes you might have to spend an hour or hours searching for a way to successfully explain something you think of as simple or obvious
  • This is part of your job. You’re there to help people figure out how to do things, and sometimes that’s hard.
  • It’s not ok to get angry at or frustrated with someone when they’re having trouble understanding something. If you’re feeling that way, it’s your problem and not theirs, and you need to find help dealing with it.
  • Treat people with consistent respect. That makes a huge difference.

Respect your client’s priorities:

  • Adults in therapy get to decide which things they want to work on
  • If they want help with one thing, and you think something else would be more helpful, it’s their call and not yours
  • It’s ok to tell them what you’d advise and why
  • It’s not ok to coerce them into doing what you want
  • It’s also not ok to treat them as less-than-human or unworthy of help if their priorities are different from yours
  • For instance, someone might care about reducing pain but not especially care about walking
  • Or someone might care about nutrition for cognitive functioning but not especially care about weight loss
  • And they get to decide that

Kids in therapy also have agency

  • Kids don’t get to decide everything the way adults do, but what they want still matters
  • It’s important to acknowledge that they have opinions and priorities
  • And it’s important to listen seriously. Sometimes they know something you don’t, and sometimes listening will change your opinion of what they should be doing in therapy
  • And sometimes, their opinions and priorities should be respected even if you think they are making a mistake
  • This is especially true of teenagers
  • Don’t equate kids with their parents. Sometimes kids and parents disagree. Listening to the parents isn’t enough
  • Do listen to the parents, though. They probably know relevant things about your child that you don’t know. Not always, but usually.