disability shame

Believing in ourselves as disabled people

As disabled people, it can be very hard to learn to believe in ourselves. We’re often taught not to.

We’re told over and over “believe in yourself, and you can do anything!” and that if we work hard, we can overcome disability. That sounds positive, but it actually teaches us that we’re not worth believing in as the people we really are.

In the name of believing in ourselves, we’re told to ignore key facts about ourselves. We’re taught that believing in ourselves means that if we ignore disability as hard as possible, it will go away and we’ll be ok.

But ignoring reality doesn’t change it. No matter how we feel, no matter what we believe, our bodies exist and matter. Our limitations stay important.

We need to get real, and we need to believe in ourselves for real. We have real bodies. We have real minds. We have real limitations. We are real people, worthwhile as we really are.

Believing in ourselves means self awareness and self acceptance, including of our disabilities. We can believe in ourselves enough to stop fighting with our bodies and brains, and to start working with them rather than against them.

We can understand our limitations, and face them without shame. We can accommodate our disabilities. We can take our strengths seriously, and respect our capabilities in an honest way. We can enjoy things and have good lives. We can figure out for ourselves which things to do, and how to do them.

We can’t overcome disability — and we don’t need to. We are worth believing in as the people we really are.

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.

“You’re just looking for a quick fix”

If you use medication to make your life easier or better in any way, some people might object, and say “you’re just looking for a quick fix!”.

This is a mean and unhelpful thing to say.

Medication isn’t the right answer for everyone who has cognitive or mental health problems or pain or other reasons people take medication, but it can be game changing for some people. If you try medication and find that it makes your life easier, that’s a good thing, and it’s ok to be happy about it.

It’s ok to want your life to be easier. It’s ok if it turns out that there’s something that works quickly that makes things better. Using an effective strategy to make your life better isn’t being lazy; it’s being efficient.

Ways autism testing can be triggering

nonbinarymollyringwald answered your question “Official autism diagnosis?”

Would it be possible for you to describe what particularily triggering aspects of these tests might be?

realsocialskills said:

There are several potentially triggering aspects of autism testing. Not everyone feels this way, but these are things some people experience:

The tone of the evaluation might be triggering in itself:

  • On Tumblr, looking for autistic attributes can be a positive or neutral thing
  • A lot of people here have a positive view of autism
  • And a matter-of-fact approach to autism-related difficulties
  • Autism testing is not like that
  • Autism testing is looking for flaws, and is based on the assumption that autistic traits are unfortunate and undesirable
  • That can be hard to deal with. It can be very unpleasant to demonstrate over and over that you have highly stigmatized attributes, especially if the person testing you doesn’t understand why the stigma is unjustified
  • It can help to keep in mind that there is a community of people who respect your brain just the way it is, and that acceptance is more powerful than medical stigma

Having to do stuff you’re bad at over and over while someone watches:

  • Autism testing aims to conclusively demonstrate that you’re bad at certain things
  • Given that autism is highly stigmatized, it’s likely that you’re insecure about at least some of the things you’re being tested for
  • You may be accustomed to trying to hide and cover for things you can’t do no matter how much people tell you that you should be able to
  • Testing involves showing the person evaluating you, over and over, that you can’t do certain things, or can’t do certain things in the ways expected for neurotypical people your age
  • That can be painful or frightening
  • It can help to remember that you can’t actually flunk a neuropsych evaluation
  • You’re ok, and doing things badly on neuropsych tests doesn’t mean that you’re bad or that you’re failing. It just means that you’re disabled in some way, and that’s ok.
  • It still might feel really, really bad. That’s not your fault, and you’ll be ok even if the testing is very upsetting

Some tests that you may have involve reading out loud:

  • You might take a vocabulary test that involves reading many words out loud
  • Some of them are words most people don’t know
  • So it’s likely that you will end up having to mispronounce a bunch of words
  • This can be upsetting or triggering if you’ve been made fun of for reading mistakes, (or if being good at reading is an important part of your identity)

No-win tests:

  • There are some tests in which it’s not possible to get every answer right
  • eg: There’s one test involving sorting cards in which they change the rules periodically to see how you react to changes
  • It can help to keep in mind that some of the tests might be intentionally messing with your perceptions, or otherwise intentionally confusing
  • It’s ok to be confused during testing. 

Not being understood or believed:

  • Some of the concepts used in autistic and developmental disability self-advocacy have not made it into the mental health and neurology professional communities
  • For instance, it is likely that the person evaluating you will not fully understand your explanation of why and how you stim, even if they know some things about the importance of stimming
  • They also might not understand or believe you about your communication, especially if it defies stereotypes
  • Eg: if you demonstrate a high verbal IQ, they might have trouble understanding if you say that you’re sometimes functionally nonverbal
  • eg: If you say that you understand metaphors and body language but have trouble with overly literal technical language, they might not understand that
  • The specifics vary a lot, but it’s likely that there will be *something* significant that they don’t understand or believe you about
  • Further, some things that have made it into professional knowledge, and even the diagnostic standards, are not necessarily common knowledge among all professionals
  • For instance, some psychiatrists believe that autistic people can’t have empathy, and will think that people who understand emotions can’t be autistic 
  • It helps to keep in mind that you don’t need the person evaluating you to fully understand, or even to be particularly insightful about autism
  • The main thing you can get from a diagnostician is a diagnosis, and documentation of your need for accommodation and/or services
  • Anything else is a bonus; good if you can get it, but not something to count on
  • Keep in mind that the person diagnosing you is not your only means of support, and that you can get help and insight elsewhere if you don’t get it from them

Bringing up childhood memories:

  • One requirement for autism diagnosis is that symptoms have to have been present in early childhood
  • This means that they will ask you about childhood
  • They might also ask to talk to your parents, or to see records related to childhood
  • This might be very painful to think about, especially if some of your earliest memories involve adults in your life thinking there was something very wrong with you and trying to change you
  • It also might be hard to discuss with family members, especially if they feel guilty or are defensive.
  • It can help to remember that you can’t actually flunk childhood, no matter how bad some of it was at the time
  • And that you’re not broken, and it wasn’t your fault if adults didn’t understand, and it wasn’t your fault if they hurt you
  • And that you’re not a child anymore, and that you will never have to be a little kid who adults are deeply concerned about ever again. 

Psychiatric screening:

  • You may have some kind of mental health testing
  • You will probably have a depression and anxiety screening
  • If your disability or health issues have been dismissed as depression/anxiety in the past, this might be frightening
  • It also might be hard if you’ve had bad experiences with therapy in the past
  • It can help to remember that this is probably not a primary part of the evaluation
  • It can also help to remember that, even if you have a mental health condition, psychiatric disability, or are crazy (including all three concepts because different people prefer different concepts for valid reasons), it doesn’t mean you’re not autistic. It’s possible, and common, to have both.

Social skills and empathy testing:

  • Some autism tests are supposed to test your ability to feel empathy, understand emotions, hear tones of voice, and understand body language
  • These tests are utterly ludicrous
  • Some of them are based on offensive stereotypes
  • One involves looking at pictures of actors with exaggerated facial expressions and saying which emotion you think they’re feeling. (They provide a list of seven.)
  • Taking ludicrous tests might feel degrading in itself, especially if you can’t answer the way they want you to
  • It might help to remember that these tests are not actually reliable indicators of your understanding of other people


  • If you’re being tested for autism, it means that someone else will be deciding whether or not to diagnose you
  • This might also mean deciding whether you qualify for services you need
  • Or whether you qualify for legally-mandated accommodations you need
  • It can also affect how you see yourself, and how others see you
  • That’s a lot of power to put in someone else’s hands, especially if their understanding of autism is partial
  • That can be very scary, especially if you’ve had bad experiences with testing or gatekeeping in the past

These are the potentially triggering and painful aspects of autism testing that I know about. Does anyone want to weigh in about others?

On feeling like you have no right to call yourself disabled

I have depression and OCD and I keep feeling like I don’t have the right to consider myself disabled or seek accomodation because they’re mental illnesses. How do I shake that feeling?
realsocialskills said:
I think that it might help to realize that self-doubt is normal for people with disabilities. I think most of us feel that way, regardless of what kind of disability we have. 
The reason this is important to understand is that often, when we feel doubt, it can feel like evidence that there’s a *reason* to feel that kind of doubt. But it it isn’t. Most people with disabilities feel that way.
I don’t think this actually has much to do with your particular conditions being mental illnesses. 
Categories don’t matter, except for some practical reasons like access to services and making it easier to find other people who get it. What matters is what your needs are. If you need accommodations in order to function well, it’s important to seek them out. Spending a lot of mental energy agonizing over whether or not you deserve them is not going to do you or anyone any good.
I think part of the reason a lot of us feel this way is that we never really see descriptions of disabled folks who resemble us, but we see a LOT of descriptions of disability that don’t match us at all.
Think about what the media’s like. It’s full of people who bravely overcame their disabilities. It’s also full of stories like “the doctors said my baby would never walk, but we didn’t listen to those doctors and now she’s an honor student!”. It’s also full of smutty stories about people who didn’t overcome their impairments suffering and dying and being mysterious unpeople. Or as having super powers, or as having a disability kind of like an accessory, without it affecting their life in any significant way. None of these descriptions match what people with disabilities are actually like, but they are *the only ones we ever see*.
And even beyond what the media says, most people without disabilities have no idea how wrong these descriptions are. It’s jarring. 
When your actual experience with disability bears little resemblance to what everyone around you thinks disability is like, it’s easy to feel like a fraud.
One thing that helps with that is seeking out other people with disabilities similar to yours who think of disability in a matter-of-fact way, and work on trying to live well with your kind of disability. When you talk to people who get it, it makes it a lot easier to realize that what you are experiencing is real.
So, for you, it would probably be really helpful to find more people with depression and OCD to talk to, and more authors with depression and OCD to read.
Also, be careful about exposing yourself to people who yell a lot about fake disabled people or appropriation. Those people are wrong, but what they say hits insecure disabled folks really hard. If you’re not confident about yourself, you can get hurt really badly by that ideology.
Do any of y'all have suggestions either of good resources for depression/OCD community, or other ways of coping with feeling like you don’t have the right to consider yourself disabled?

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.

When food is too hard (my reply to an objection)

Content warning: This post is my reply to someone who reblogged calling some of my low-spoons food strategies lazy and unhealthy. Some of y'all might be better off skipping this one.



Anonymous asked realsocialskills:

Related to the remembering food exists thing, do you have any advice for what to do when your depression is making preparing food seem so hard that you’d nearly prefer to just go hungry?

A couple of suggestions:

Order a pizza, or some other form of food that gets delivered to you

  • Hunger feeds on itself and makes everything harder
  • If you’re in a state of mind where preparing food seems too difficult to be bearable, ordering food can often break that cycle
  • So can getting takeout or going to McDonalds
  • This is not a frivolous expense
  • And it’s not necessarily more expensive than preparing your own food. McDonalds has a dollar menu.
  • When you’re starving from not eating, it is not the time to worry about health food. Making sure that you eat comes first. Eating anything (that you’re not allergic to) is healthier than regularly going hungry because you can’t bring yourself to eat.

Keep stuff around that’s easy to eat and doesn’t require any preparation or only need to be microwaved, for instance:

  • A box of cereal
  • Chocolate
  • Granola bars
  • Ice cream
  • Popsickles
  • Protein shakes
  • Rice cakes
  • Peanut butter
  • TV dinners
  • Frozen chicken nuggets
  • It can also help to keep around disposable plates and utensils so the thought of having to wash dishes doesn’t deter you from eating

Get someone else to tell you that you need to eat:

  • Sometimes it’s easier to remember that eating is important if someone else tells you
  • For instance, if you text a friend saying “remind me that I need to eat” and they do, that can sometimes make it more possible

Get someone else to talk you through the steps of making food:

  • If there’s someone you can ask how to find/make food, that can be helpful
  • Sometimes what’s really exhausting is not so much doing the steps, as it is anticipating them, or figuring out what they are
  • If someone can help you through that, it can make it much more possible

watsonly said:

okay, this is a really good post but i do think someone should mention that defaulting to eating chocolate, ice cream, and tv dinners is really unhealthy and will probably only make you feel worse in the long run. i don’t know about you guys but eating a bag of chips feelings great in the moment but then 30 minutes later i just feel worse than before

so i give you a list of super fast and easy snacks that are inexpensive, yummy, and best of all will make you feel great (◕‿◕✿)

  • cucumbers. seriously, just cucumbers. maybe some salt on top
  • rice crackers oh my god they are so cheap and mmmmmm
  • apples, peaches, pears, grapes, any fruit really :)
  • plain yogurt with some warm honey drizzled on top
  • flavoured yogurt + granola
  • toast. everyone likes toast.
  • chickpeas! yeah, those weird things you always pass in the supermarket. mix ‘em up with whatever diced veggies you have in the fridge and put a splash of olive oil on top ;)
  • NACHOS. IT IS SO DARN EASY TO MAKE NACHOS. SERIOUSLY. DO IT. (tortilla chips + salsa + cheese + oven + 3 minutes)
  • some lovely campbells soup with soda crackers ^.^
  • eggs! fry ‘em, boil ‘em, mix em with some cheese and omelette them!
  • really just eat whatever makes you feel happy and healthy yo <33

oh, also, let’s not engage in any of this paper plate crap - WASH THOSE DISHES! seriously. rinse out your plate/bowl/cutlery when you’re done eating and do it later if you like. bUT DONT MAKE BEING LAZY AND ACCESSIBLE OPTION. PUT ON SOME MUSIC IF YOU LIKE. DANCE AROUND. USE WAY TOO MUCH SOAP SO THE WHOLE KITCHEN SMELLS LIKE SUNLIGHT. PRETEND YOU’RE ON A COOKING SHOW. DO WHATEVER YOU NEED TO DO, JUST HAVE FUN WITH IT!


realsocialskills said:

There are some major problems with your advice. My post was for people who have trouble eating because the food logistics are very difficult for them. The problem here isn’t how to do what’s nutritionally ideal. The problem is how to make sure you eat and don’t starve, even when you’re so low on spoons that the thought of eating makes you want to cry.

Enjoying food is great. But avoiding starvation is more important. So is eating regularly enough to avoid cognitive side effects of hunger.

Most things that you have suggested are not viable for people who are having this degree of trouble eating. Here are some reasons:

Low calorie snacks are not a good solution for people who are having trouble eating enough food:

  • Defaulting to low-calorie foods is a great strategy for people who compulsively overeat and consume too many calories
  • But people who have trouble eating have the opposite problem.
  • What’s a healthy food choice depends on what your needs are
  • People who find it so difficult to eat that they’d often rather go hungry need strategies for making sure they get enough calories
  • For people who have that problem, defaulting to low calorie foods can actually be dangerous
  • Ice cream contains a lot more nutritionally essential things than cucumbers and rice cakes do

In a similar way, many of your suggestions are too difficult/exhausting/complicated for people who have this problem:

  • A lot of your suggestions call for fresh perishable ingredients. In order to eat that way, people have to be either capable of keeping ingredients around, or capable of going out and getting the ingredients whenever they need to eat. That’s often not possible.
  • Using a blender to blend something takes a lot of steps. And then you have to clean the blender, or it will make your kitchen disgusting. That can be a major deterrent to eating.
  • This is also true of making omelets and other things that require cooking. You have to have the energy and executive functioning to cook safely, and then you have to wash the pans.
  • Drizzling warm honey on top of yogurt is only viable for people who can heat honey and put it on something without making an exhausting mess.
  • Putting something in the oven and keeping track of it for three minutes *and successfully cleaning it up afterwards* isn’t easy or possible for everyone.

Some of your suggestions don’t actually make nutritional sense for anyone:

  • TV dinners are expensive, but they’re not necessarily unhealthy.
  • A lot of them are way more nutritionally balanced than a plate of nachos
  • And just about any TV dinner is better for most people than eating nothing but fruit and cucumbers

Paper plates and other disposables are necessary and important for some people:

  • Disability is a real thing
  • Not everyone can handle washing dishes
  • Trying to wash dishes can seriously damage some people’s health
  • Because it can deter them from eating to the point that they become malnourished
  • And it can also make it impossible for some people to maintain a sanitary living environment
  • Calling people who have this problem lazy doesn’t make the problem go away
  • But using disposable dishes does, for some people
  • People with disabilities have the right to eat and living in sanitary conditions

Fun and a light hearted positive attitude do not actually generate spoons or solve sensory problems:

  • If people are too exhausted to move and can barely handle getting up to make a sandwich, no amount of music is going to make it possible for them to wash dishes or make nachos
  • If the texture of water and dish soap makes someone want to scream, no amount of pretending to be on a cooking show is going to stop having to wash dishes from deterring them from eating
  • If someone finds almost all food unbearably repulsive, having an attitude that food is meant to be enjoyed is not going give them the ability to eat. Having access to the things they *do* find reliably edible will.
  • Sometimes people have good reasons for needing certain things to be really, really easy. That doesn’t mean they’re bad people. It just means they need to find easy ways to do things.

If you don’t have this level of difficulty with food, and you can handle eating more complicated and difficult things regularly, that’s great. But I wrote this post for people who need food to be as easy as possible so that they are actually able to eat it.

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 mroe, 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.

“if we care enough, we’ll be cured”

“one time, a guy with your condition hired a personal trainer and did 30hrs of exercise a week and now he’s basically cured”

no, shut up, bite me. 

We have discovered that if I spend five to six hours a week doing PT and OT, my motor skills get better, I get stronger, etc. I lose a lot of it pretty face once I quit the regimen, though. 

I’m in college, I take challenging classes, I run a club and attend two others, I have a modest social life, I need to spend a couple of hours a week on my creative writing, or I get miserable.I like to watch the occasional bit of TV. I have to shower, do laundry, eat, etc.

Where’s my six hours a week? It would cut into that stuff. 

You’re right, if I really wanted to do PT/OT I could make time, I could drop the clubs, cut back on the socializing, write less, quit TV.

I don’t want to. I value that stuff. I get by just fine with my current ability levels, and I don’t want to sacrifice that for a boost that would go away a month or so after I dropped the PT.

A cure-focused life would be a lot less rich for me. 

(Also, shaming your children with “nobody will ever date you if you don’t learn to do XYZ” is a good way to groom your children for abusive relationships. In general, shaming your children for things beyond their control is a good way to raise miserable children and parents really need to cut that shit out)

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.