dehumanization

The rules about responding to call outs aren’t working

Privileged people rarely take the voices of marginalized people seriously. Social justices spaces attempt to fix this with rules about how to respond to when marginalized people tell you that you’ve done something wrong. Like most formal descriptions of social skills, the rules don’t quite match reality. This is causing some problems that I think we could fix with a more honest conversation about how to respond to criticism.

The formal social justice rules say something like this:

  • You should listen to marginalized people.
  • When a marginalized person calls you out, don’t argue.
  • Believe them, apologize, and don’t do it again.
  • When you see others doing what you were called out for doing, call them out.

Those rules are a good approximation of some things, but they don’t actually work. It is impossible to follow them literally, in part because:

  • Marginalized people are not a monolith. 
  • Marginalized people have the same range of opinions as privileged people.
  • When two marginalized people tell you logically incompatible things, it is impossible to act on both sets of instructions.
  • For instance, some women believe that abortion is a human right foundational human right for women. Some women believe that abortion is murder and an attack on women and girls.
  • “Listen to women” doesn’t tell you who to believe, what policy to support, or how to talk about abortion. 
  • For instance, some women believe that religious rules about clothing liberate women from sexual objectification, other women believe that religious rules about clothing sexually objectify women. 
  • “Listen to women” doesn’t tell you what to believe about modesty rules. 
  • Narrowing it to “listen to women of minority faiths” doesn’t help, because women disagree about this within every faith.
  • When “listen to marginalized people” means “adopt a particular position”, marginalized people are treated as rhetorical props rather than real people.
  • Objectifying marginalized people does not create justice.

Since the rule is literally impossible to follow, no one is actually succeeding at following it. What usually ends up happening when people try is that:

  • One opinion gets lifted up as “the position of marginalized people” 
  • Agreeing with that opinion is called “listen to marginalized people”
  • Disagreeing with that opinion is called “talking over marginalized people”
  • Marginalized people who disagree with that opinion are called out by privileged people for “talking over marginalized people”.
  • This results in a lot of fights over who is the true voice of the marginalized people.
  • We need an approach that is more conducive to real listening and learning.

This version of the rule also leaves us open to sabotage:

  • There are a lot of people who don’t want us to be able to talk to each other and build effective coalitions.
  • Some of them are using the language of call-outs to undermine everyone who emerges as an effective progressive leader. 
  • They say that they are marginalized people, and make up lies about leaders.
  • Or they say things that are technically true, but taken out of context in deliberately misleading ways.
  • The rules about shutting up and listening to marginalized people make it very difficult to contradict these lies and distortions. 
  • (Sometimes they really are members of the marginalized groups they claim to speak for. Sometimes they’re outright lying about who they are).
  • (For instance, Russian intelligence agents have used social media to pretend to be marginalized Americans and spread lies about Hillary Clinton.)

The formal rule is also easily exploited by abusive people, along these lines:

  • An abusive person convinces their victim that they are the voice of marginalized people.
  • The abuser uses the rules about “when people tell you that you’re being oppressive, don’t argue” to control the victim.
  • Whenever the victim tries to stand up for themself, the abuser tells the victim that they’re being oppressive.
  • That can be a powerfully effective way to make victims in our communities feel that they have no right to resist abuse. 
  • This can also prevent victims from getting support in basic ways.
  • Abusers can send victims into depression spirals by convincing them that everything that brings them pleasure is oppressive and immoral. 
  • The abuser may also isolate the victim by telling them that it would be oppressive for them to spend time with their friends and family, try to access victim services, or call the police. 
  • The abuser may also separate the victim from their community and natural allies by spreading baseless rumors about their supposed oppressive behavior. (Or threatening to do so).
  • When there are rules against questioning call outs, there are also implicit rules against taking the side of a victim when the abuser uses the language of calling out.
  • Rules that say some people should unconditionally defer to others are always dangerous.

The rule also lacks intersectionality:

  • No one experiences every form of oppression or every form of privilege.
  • Call-outs often involve people who are marginalized in different ways. 
  • Often, both sides in the conflict have a point.
  • For instance, black men have male privilege and white women have white privilege.
  • If a white woman calls a black man out for sexism and he responds by calling her out for racism (or vice versa), “listened to marginalized people” isn’t a very helpful rule because they’re both marginalized.
  • These conversations tend to degenerate into an argument about which form of marginalization is most significant.
  • This prevents people involved from actually listening to each other.
  • In conflicts like this, it’s often the case that both sides have a legitimate point. (In ways that are often not immediately obvious.)
  • We need to be able to work through these conflicts without expecting simplistic rules to resolve them in advance.

This rule also tends to prevent groups centered around one form of marginalized from coming to engage with other forms of marginalization:

  • For instance, in some spaces, racism and sexism are known to be issues, but ableism is not.
  • (This can occur in any combination. Eg: There are also spaces that get ableism and sexism but not racism, and spaces that get economic justice and racism but not antisemitism, or any number of other things.)
  • When disabled people raise the issue of ableism in any context (social justice or otherwise), they’re likely to be shouted down and told that it’s not important.
  • In social justice spaces, this shouting down is often done in the name of “listening to marginalized people”.
  • For instance, disabled people may be told ‘you need to listen to marginalized people and de-center your issues’, carrying the implication that ableism is less important than other forms of oppression.
  • (This happens to *every* marginalized group in some context or other.)
  • If we want real intersectional solidarity, we need to have space for ongoing conflicts that are not simple to resolve.

Tl;dr “Shut up and listen to marginalized people” isn’t quite the right rule, because it objectifies marginalized people, leaves us open to sabotage, enables abuse, and prevents us from working through conflicts in a substantive way. We need to do better by each other, and start listening for real.

Autistic people can have friends

One reason I started writing this blog is that I got tired of seeing social skills programs teach autistic people that they have to become normal in order to have friends.

It’s not true. There are a lot of autistic people who have friends without becoming remotely normal. Oddness and friendship are entirely compatible.

You can be autistic, seem autistic, and have friends who like you and enjoy your company.

Some people won’t like you, and that’s ok. Not everyone has to like everyone.

Some people will dislike you because they are bigoted against autistic people. That’s not ok, but it doesn’t have to ruin your life. Ableists don’t speak for everyone. Those people aren’t your friends. Other people can be.

You’ll probably always face ableism. Trying to be normal probably won’t make that go away; accepting yourself probably won’t make that go away either. You don’t need to change the whole world in order to have friends.

You can have friends as the person you are, in the world as it is now.

On bearing witness to the humanity of disabled people and the destructiveness of ableism

One of the most powerful things that we can do is to bear witness to the humanity of disabled people and the destructive consequences of ableism. When we bear witness to our humanity and to the things that others do to us, it changes the conversation. Our stories are powerful.

Some people have the privilege of being largely untouched by ableism. (Or being untouched by a particular kind of ableism.) Most people who are privileged in this way are also unaware of how deeply marginalized disabled people are being harmed. (I’m using disability as the primary example here, but this actually applies to ever kind of marginalization.)

We are dehumanized, and a lot of people don’t notice that it’s happening. They’re taught to overlook our humanity, and a lot of what happens to us is hidden from them. When people learn how to notice, they often start caring.

Bearing witness to our humanity means making it impossible to discuss disability in the abstract. It means making people have to notice that when they talk about disability, they’re talking about *actual human beings*. We do things. Some of us have jobs. Some of us are artists. Some of us write. Some of us are married. Some of us are fans of TV shows. Some of us are experts in our fields. Some of us cook. All of us matter. Making people notice us as real human beings changes the conversation about disability.

Speaking out about the consequences of ableism also changes the conversation. When institution survivors bear witness to what happens in institutions, it becomes much more difficult for people to believe that institutionalization is good for disabled people. When people speak out about what authoritarian childhood therapy did to them, it’s harder to pretend that compliance training is harmless. When people speak out about electric shock, it is much harder to pretend that people who are tortured with electric shocks think that it makes their lives better.

When disabled people talk about what it is like to learn the name of their disability by eavesdropping and googling, some parents listen. Likewise, when disabled people talk about what it’s like to grow up without accurate language for ourselves, some parents come to understand the importance of talking to children about their disabilities.

Bearing witness also matters to other disabled people. We often learn to overlook our own humanity. We often learn to disregard the things that others have done to us. When other disabled people are unapologetically human, it’s easier to see ourselves as human. When other disabled people talk about the harm ableism does, it’s easier to remember that these things shouldn’t happen to us.

This doesn’t always work. When people with disabilities bear witness to our humanity and to what happens to us, we often get hostile responses. Even when some people are listening, there are usually also angry people who are not. Even when people are eventually willing to listen, they are often initially angry and mean. Those of us who talk about these things pay a price for doing so. Everyone has the right to decide for themselves whether this is a price they’re willing to pay in a given situation.

Your stories belong to you. Stories can be a powerful force for liberation, but you are not a liberation object. You are a person. You have the right to decide whether or not to tell your stories. If you choose to tell stories, you have the right to decide which stories to tell, how you want to tell them, and who you want to tell them to. (Including, whether or not you want to answer questions that people ask you.) You can also change your mind. Doing some advocacy work doesn’t make you an advocacy object, and it doesn’t strip you of the right to say no. No matter how politically or socially useful your stories are, they belong to you.

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.

"It's not just about wheelchair access"

I think that in disability discourse, wheelchair users face some fairly unique pressure to pretend not to be disabled. At the same time, wheelchair users are treated as the ultimate symbol of disability. In combination, I think there is very little space in which wheelchair users are allowed to talk about their actual experiences and needs. (Even in disability rights space.)

To some extent, all disabled people face some version of this. The thing I think is somewhat unique to wheelchair users is pressure to be the model of successful accessibility. There’s a misconception that accessibility is basically a solved problem for wheelchair users, and that we need to expand that model to all disabled people. This goes alongside a related misconception that the purpose of accessibility is to make disability irrelevant.

Wheelchair users face intense pressure to enthusiastically pretend that wheelchairs and ramps erase disability. This goes alongside pressure to have exactly the kind of disability that fits the story that others want to tell. The story goes: “Wheelchair users can’t walk. Wheelchairs and lifts and ramps solve that problem. If we had ramps everywhere, wheelchair users wouldn’t be disabled anymore.” The reality is much more complicated.

People get very angry when wheelchair users contradict this story. Wheelchair users are often not allowed to have access needs that don’t fit the story — and they’re also not allowed to have *abilities* that don’t fit the story. This anger is so intense that it’s dangerous for wheelchair users to stand and walk in public places. People also get angry at wheelchair users when a ramp is too steep, when it’s blocked, or when they insist that the existence of a lift isn’t good enough, they need to have the key so that they can actually *use* it. There’s not much room in the wheelchair access success story for talking about these realities.

There’s also not very much room in this success story for talking about the realities of growing up with a mobility disability. Children still grow up manhandled by therapists and pressured to learn to walk at all costs. Children still go through repeated surgeries aimed at fixing them. Children still get taught to allow adults to hurt them and touch them in ways that would be regarded as abuse if they were typically developing. Children are still pervasively excluded from educational and recreation activities and expected to bear it with a smile. Ramps and wheelchairs didn’t fix that, and accessibility advocacy should not make those things unspeakable.

The success story has even less room for talking about pleasure. Harriet McBryde Johnson said it better than I could, so I’m going to quote her:

“We need to confront the life-killing stereotype that says we’re all about suffering. We need to bear witness to our pleasures. …

Throughout my life, the nondisabled world has told me my pleasures must be only mental, never physical. Thinking to help me, it has said my body is unimportant. I respectfully disagree. For me, the body—imperfect, impermanent, falling apart—is all there is. Through this body that needs the help of hands and machines to move, that is wired to sense and perceive, comes all pleasure, all life. My brain is only one among many body parts, all of which work through one another and cooperate as best they can.”

McBryde Johnson, Harriet. Too Late to Die Young: Nearly True Tales from a Life (p. 255). Henry Holt and Co.. Kindle Edition.

Treating wheelchair users as a symbol of disability successfully erased has the effect of silencing wheelchair users. I think that a lot of us have been complicit in this silencing, and that we need to address this in disability culture. Partly for the sake of better solidarity with wheelchair users; partly because the silencing is hurting all of us.

I think that all disabled people face pressure to see ourselves as characters in a story about accessibility. Sometimes we’re expected to write the story. Sometimes we’re seen as characters in a story someone else is writing. Sometimes we’re supposed to believe that the story has already been written, and that all we have to do is get people to read the book.

I think that wheelchair users face particularly intense pressure to pretend that the story has already been written and has a satisfying ending. That’s not something any of us should envy. It’s not privilege. It’s silencing. And I think we need a lot less silence and a lot more solidarity. It doesn’t have to be this way, and it isn’t always this way. When we have space for honesty about the realities of disability, our communities are a lot stronger.

Wheelchair users are not a collective accessibility success story. Wheelchair users are people. None of us are stories. We’re all people. No amount of accessibility is going to make our bodies and brains irrelevant. Disability rights advocacy shouldn’t be about erasing difference. The point is not sameness; it’s equality. Accessibility is about building a world that treats us all as fully human, differences and all.

We're autistic, we're human, get used to it

Some dehumanizing descriptions of autism are negative. For example, some people believe that we are incapable of love, or incapable of imagination, or incapable of understanding anything of importance.

Some dehumanizing descriptions of autism are positive. For instance, some people believe that we are incapable of lying, incapable of being manipulative, and that we always say exactly what we mean.

Autism doesn’t work that way. We are fully human, for better and for worse. We are fallible. We make communication mistakes. We don’t always know what we mean, and we don’t always express ourselves clearly. For instance, sometimes we say things that feel direct but that are actually very confusing. That’s human.

We are capable of treating others well, and we are capable of treating others badly. We are capable of caring about others, and we are capable of indifference. We are capable of being kind, and we are capable of being cruel.

Autism means having disabilities that can affect how we communicate, how we move, and how we understand things. Autism doesn’t make us better than other people, and it doesn’t make us worse. We’re not subhuman, and we’re not superhuman. We’re just people.

Abuse does not make you a broken monster

Our culture often sends the message that if you were abused as a child, you’ll inevitably abuse your children.

It’s not true. I know multiple people personally who grew up in violent homes who have chosen not to be abusive. They experienced violence as children; they do not commit acts of violence as adults. It is possible, it is happening, and people making that choice deserve more respect and recognition.

It’s easier to learn how to parent well from growing up with good parents. It’s also possible to learn from other people. I know this because I’ve seen people do it. To some extent, *everyone* learns from people other than their own parents. (Including their own children. Kids are born with minds of their own, and people who respect their children learn a lot from them about how parenting can and can’t work.) 

It’s a matter of degree. Everyone needs some degree of help and support in learning how to parent; some people need more help and support. Abuse (among other things) may mean that someone needs more help learning parenting; it does not mean that someone will inevitably become an abuser. 

I think we need to talk about this more. Abuse survivors should not be treated as broken monsters. Violence is a choice, and abuse survivors are capable of choosing nonviolence. Abuse survivors are full human beings who have the capacity to make choices, learn skills, and treat others well. 

On trauma aftermaths that don't advance the plot

The way TV shows trauma can lead people to expect every reference to trauma to be a plot point. This can be isolating to people coping with the aftermaths of trauma. Sometimes people treat us as stories rather than as people. Sometimes, instead of listening to us, they put a lot of pressure on us to advance the plot they’re expecting.

On TV, triggers tend to be full audiovisual flashbacks that add something to the story. You see a vivid window into the character’s past, and something changes. On TV, trauma aftermaths are usually fascinating. Real life trauma aftermaths are sometimes interesting, but also tend to be very boring to live with.

On TV, triggers tend to create insight. In real life, they’re often boring intrusions interfering with the things you’d rather be thinking about. Sometimes knowing darn well where they come from doesn’t make them go away. Sometimes it’s more like: Seriously? This again?

On TV, when trauma is mentioned, it’s usually a dramatic plot point that happens in a moment. In real life, trauma aftermaths are a mundane day-to-day reality that people live with. They’re a fact of life — and not necessarily the most important one at all times. People who have experienced trauma do other things too. They’re important, but not the one and only defining characteristic of who someone is. And things that happened stay important even when you’re ok. Recovery is not a reset. Mentioning the past doesn’t necessarily mean you’re in crisis.

On TV, when a character mentions trauma, or gets triggered in front of someone, it’s usually a dramatic moment. It changes their life, or their relationship with another character, or explains their backstory, or something. In real life, being triggered isn’t always a story, and telling isn’t always a turning point. Sometimes it’s just mentioning something that happened to be relevant. Sometimes it’s just a mundane instance of something that happens from time to time.

Most people can’t have a dramatic transformative experience every time it turns out that their trauma matters. Transformative experiences and moments of revelation exist, but they’re not the end all and be all of trauma aftermaths. Life goes on, and other things matter too. And understanding what a reaction means and where it came from doesn’t always make it go away. Sometimes, it takes longer and has more to do with skill-building than introspection. Sometimes it doesn’t go away.

On a day to day level, it’s often better to be matter-of-fact about aftermaths. It can be exhausting when people see you as a story and expect you to advance the plot whenever they notice some effect of trauma. Pressure to perform narratives about healing doesn’t often help people to make their lives better. Effect support involves respecting someone as a complex human, including the boring parts.

The aftermath of trauma is a day-to-day reality. It affects a lot of things, large and small. It can be things like being too tired to focus well in class because nightmares kept waking you up every night this week. TV wants that to be a dramatic moment where the character faces their past and gets better. In real life, it’s often a day where you just do your best to try and learn algebra anyway. Because survivors do things besides be traumatized and think about trauma. Sometimes it’s not a story. Sometimes it’s just getting through another day as well as possible.

A lot of triggers are things like being unable to concentrate on anything interesting because some kinds of background noises make you feel too unsafe to pay attention to anything else. For the zillionth time.  Even though you know rationally that they’re not dangerous. Even though you know where they come from, and have processed it over and over. Even if you’ve made a lot of progress in dealing with them, even if they’re no longer bothersome all the time. For most people, recovery involves a lot more than insight. The backstory might be interesting, but being tired and unable to concentrate is boring.

Triggers can also mean having to leave an event and walk home by yourself while other people are having fun, because it turns out that it hurts too much to be around pies and cakes. Or having trouble finding anything interesting to read that isn’t intolerably triggering. Or having trouble interacting with new people because you’re too scared or there are too many minefields. Or being so hypervigilant that it’s hard to focus on anything. No matter how interesting the backstory is, feeling disconnected and missing out on things you wanted to enjoy is usually boring.

When others want to see your trauma as a story, their expectations sometimes expand to fill all available space. Sometimes they seem to want everything to be therapy, or want everything to be about trauma and recovery.

When others want every reference to trauma to be the opening to a transformative experience, it can be really hard to talk about accommodations. For instance, it gets hard to say things like:

  • “I’m really tired because of nightmares” or 
  • “I would love to go to that event, but I might need to leave because of the ways in which that kind of thing can be triggering” or 
  • “I’m glad I came, but I can’t handle this right now” or
  • “I’m freaking out now, but I’ll be ok in a few minutes” or 
  • “I need to step out — can you text me when they stop playing this movie?”

It can also be hard to mention relevant experiences. There are a lot of reasons to mention experiences other than wanting to process, eg:

  • “Actually, I have experience dealing with that agency”
  • “That’s not what happens when people go to the police, in my experience, what happens when you need to make a police report is…”
  • “Please keep in mind that this isn’t hypothetical for me, and may not be for others in the room as well.”

Or any number of other things.

When people are expecting a certain kind of story, they sometimes look past the actual person. And when everyone is looking past you in search of a story, it can be very hard to make connections.

It helps to realize that no matter what others think, your story belongs to you. You don’t have to play out other people’s narrative expectations. It’s ok if your story isn’t what others want it to be. It’s ok not to be interesting. It’s ok to have trauma reactions that don’t advance the plot. And there are people who understand that, and even more people who can learn to understand that.

It’s possible to live a good life in the aftermath of trauma. It’s possible to relearn how to be interested in things. It’s possible to build space you can function in, and to build up your ability to function in more spaces. It’s often possible to get over triggers. All of this can take a lot of time and work, and can be a slow process. It doesn’t always make for a good story, and it doesn’t always play out the way others would like it to. And, it’s your own personal private business. Other people’s concern or curiosity does not obligate you to share details.

Survivors and victims have the right to be boring. We have the right to deal with trauma aftermaths in a matter-of-fact way, without indulging other people’s desires for plot twists. We have the right to own our own stories, and to keep things private. We have the right to have things in our lives that are not therapy; we have the right to needed accommodations without detailing what happened and what recovery looks like. Neither traumatic experiences nor trauma aftermaths erase our humanity.

We are not stories, and we have no obligation to advance an expected plot. We are people, and we have the right to be treated as people. Our lives, and our stories, are our own.

"Have fun" should not be a rule

A lot of summer camps, youth groups, and other activities have a “have fun” rule.

The implied message is usually: This is a fun place. If you’re not having fun, you’re doing something wrong. Fix your attitude and have fun doing the fun activities.

Sometimes “have fun” rules are explicit. Sometimes they’re more implicit, and come in forms like: making people sing a song every day about how much they love camp, announcements about “we’re all having so much fun!”, or whatever else.

The problem with this is: nothing is fun for everyone. People have the right to feel how they feel about things. It’s really degrading to tell an unhappy person that they should just feel some other way.

“Have fun” rules are especially problematic for many disabled people.

Because — most programs are not fully accessible, even when they think they are. Most of us expect to encounter activities that are inaccessible in ways that make participation impossible — or that make them no fun.

And often, initially fun activities are ruined when someone treats you in a degrading way or says something awful about disability.

Being left out when everyone else is having fun is bad enough. When there’s a “have fun” rule, it’s even worse. Not only are you hurt by the exclusion, you’re told that you’re violating the rules by being hurt and unhappy.

“Have fun” rules make it really hard to solve these problems, because they make it risky to admit that you’re not having a good time.

“Have fun” rules make problems harder to solve, even when the problem has a straightforward solution. All the more so when the problem is complicated. (Or only has a partial solution.)

“Have fun” rules actually make things a lot less fun.

Some signs that a place might be an institution

Lack of accomodation for disability:

  • An organization workign with disabled or elderly or sick people ought to have a clue about access and adaptability
  • If they don’t, it’s a major red flag
  • Some examples:
  • If there are a lot of people who need wheelchairs, and none of them have personally-fitted chairs, that’s a red flag. If everyone is using an institutional wheelchair, it’s probably an institution
  • If there are a lot of residents who have limited use of their hands, and no one has any adaptive equipment for doing things like changing TV channels, it’s probably an institution

People conflate patient/client opinions with family opinions

  • For instance, if they claim that everyone there wants to be, but then they only talk about what family members say about it
  • If it’s a place people can be put into by their family members without any attempt made to see if they consent
  • If all the information on a website is for family members or social workers, and none of it is directed at people who might live in or get services from a place, it’s probably an institution

If people need staff assistance or permission to contact the outside world

  • If people who can use phones independently don’t have access to phones without asking first, it’s probably an institution
  • If there are no computers available, or all the computers are in public places, it’s probably an institution
  • If you need a password for the wifi and the residents don’t have the password, it’s probably an institution
  • If nobody has a personal cell phone, landline, or computer, it’s probably an institution

Concepts of functioning levels

  • If a place claims to be a last resort for people who can’t function in a normal setting, it’s probably an institution and it’s probably doing horrible things

Bragging about mundane things as evidence of being wonderful places:

  • It’s very common for institutions to loudly proclaim that they have a pool, TVs, a barber shop, a charity shop people can work in, or other such things
  • If they think this is deeply impressive, something is wrong
  • Things that wouldn’t be particularly notable in an apartment building or neighborhood shouldn’t be particularly notable just because elderly or disabled people are involved
  • If people think they are, it’s probably an institution, and it’s probably intentionally confusing clients about what it means to be free and in the community

If people involved are required to regularly praise it

  • Everyone is disgruntled with workplaces or other aspects of their life sometimes
  • Free people express this sometimes
  • If everyone involved in an organization says it’s wonderful, and you can’t find anything people it serves are willing to complain about, something is wrong
  • This is particularly the case if the wall or website is full of testimonials about how great it is
  • And also particularly the case if people are regularly required to sing songs praising the place

If there isn’t serious regard for the privacy of people the organization serves

  • For instance, if there is a description of every single resident and their activities available on a public website, something is wrong
  • If you are brought into someone’s room without their freely given consent just so you can see what the rooms look like, it’s probably an institution

Open letter to sick kids and disabled kids.

Dear sick kids, dear disabled kids,

You may be facing a lot of adults who want to believe that your therapy is fun. You may feel differently. You may not be having fun. That’s ok. You’re not failing. You don’t owe it to anyone to enjoy the things that are happening to you.  

Even if you think the therapy is important, you might not think it’s fun. You don’t have to think that it’s fun. Your feelings are yours, and your feelings matter. No one has the right to tell you how to feel. No one has the right to insist that you think something is fun.

If you don’t think the therapy is a good idea, you have the right to have that opinion. Your parents or other adults may be able to decide what treatments you get. They don’t get to decide what you think, or how you feel. They can’t make things fun by loudly insisting that they are fun, or by making you smile.

It’s ok not to think that your breathing treatments are a fun game. Even if your mask is fish shaped. Even if you put frog stickers on it. Even if you had a lot of fun picking out the stickers. Even if you know that you need it in order to breathe properly. Push come to shove, it’s still a breathing treatment. You are under no obligation to enjoy it. If you’re not having fun, then it’s not fun. Even if people make you smile.

It’s ok if you don’t think a purple hospital gown means that the hospital is fun. Even if you love purple. Even if you put your favorite sparkly heart stickers on it.   Even if you want the operation or procedure you’re having, you don’t have to think that what you’re doing is fun. Even if the volunteers and play therapists are really nice. You’re still in the hospital, and it’s ok to feel however you feel about it.

It’s ok to dislike the tracing exercises your occupational therapist makes you do. Even if she says that they’re really fun and that she loved them when she was your age. It’s ok to think of it as work rather than fun. It’s also ok to think it’s a waste of your time. You are not her, and it’s not ok for her to tell you how to feel. She is not the boss of your feelings, or your likes and dislikes. You are under no obligation to have fun.

It’s ok to dislike singing silly songs with your speech therapist. Even if he tells you in an excited voice all about the great new conversation starter iPad app, it’s ok not to think it’s fun. Even if other kids seem to like it. Even if there are fun prizes for cooperating and smiling. Even if people frown when you don’t seem happy enough. You don’t have to think anything is fun. Your feelings are yours. You don’t owe it to him to like the activities you do, even if he expects it from you.

It’s ok to dislike the sensory diet an occupational therapist puts you on. You don’t have to like being brushed.You don’t have to like weights or weighted blankets.You don’t have to believe that squeezing a fidget toy is better than rocking, and you don’t have to think that chewing a tube makes the lighting and noise any less painful. Your feelings are real. If you like something, that matters, whether or not anyone else thinks it’s important. If something hurts, your pain is real whether or not anyone acknowledges it.

And so on. If you’re sick, or you’re disabled, or you’re both, there are probably a lot of things happening to you that aren’t happening to other kids. It’s ok to have whatever feelings you have about that, even if others desperately want to believe that you think all of it is really fun. It’s ok for you to think that something isn’t fun, even when adults speak in enthusiastic voices, put stickers on things, use fun toys, or whatever else.

It’s ok to think something is fun, and it’s ok to think it’s really not fun. It’s also ok to find something helpful without finding it fun. You have the right to like what you like, and dislike waht you dislike. Your feelings are your own, even if you have to smile to get people to leave you alone. 

It’s ok to like things, and it’s ok to dislike things. You are a real person, your feelings are yours, and your feelings matter. Illness, disability, and youth don’t make you any less real.

Disabled people go to disability conferences — and everywhere else, too.

I’ve been going to a lot of disability conferences recently.

Almost every presentation I’ve attended has been addressed solely or primarily to a nondisabled audience. This is odd, because there have also been very visibly disabled people at all of these conferences. (And since all the audiences contained me, they also always contained at least one disabled person.)

Even when there were very visibly disabled people in the room, people still did this. Even at conferences that have been running for a long time and *always* have multiple significantly disabled people present, people still addressed their presentations to a nondisabled audience.

For whatever reason, very few people prepare remarks with the assumption that disabled people also want to learn more about disability. I don’t know why this is, but I do know that it’s a pervasive problem.

I’ve observed this problem even in lectures on the importance of presuming competence and remembering that disabled people have things to say. Even in that context, I’ve heard “you and I can do x, but they…” or “you and I can assume that others will listen to us, but they…”. And this is even when there are multiple people in the room who are visibly disabled and unable to speak.

It’s very strange. There’s some kind of cultural bias that causes people to ignore the perspectives of disabled people so automatically and thoroughly that they forget that their perspectives even exist. It can be hard to notice that you’re doing this. It’s worth putting active effort into acknowledging disability perspectives. Having the right intentions isn’t usually enough.

When you’re lecturing on disability, it’s worth thinking about questions like:
Am I saying “you and I” or “we” to mean “people who don’t have a particular impairment”?
If so, how can I use the example I want to use without making disabled audience members “they”?
Am I addressing the disabled people in the room, or am I assuming a nondisabled audience?
Am I saying anything that is relevant to or targeted to the disabled people in the room?
If not, why not?
Is there a way to fix that?

Actually, this is good practice even if you’re *not* addressing disability-related topics. Disabled people are everywhere. We have the same range of interests as anyone else. There’s likely a disabled person in your audience (especially if your remarks are recorded, but even if they are not.) It’s much better to assume that there are always disabled people in the audience, and to speak accordingly.

Tl;dr: Disabled people exist, and we go to disability conferences — and everywhere else, too. If you’re giving a talk, assume that disabled people will be in the audience, and prepare your remarks accordingly.

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.

ABA therapy is not like typical parenting

Content note: This post is about the difference between intense behavior therapy and more typical forms of rewards and punishments used with typically developing children. It contains graphic examples of behavior programs, and is highly likely to be triggering to ABA survivors.

Anonymous said to realsocialskills:

I just read your thing about people with disabilities and their interests. Don’t people do the same thing to typical children? Restrict access to things enjoyed until act ABC is completed? For example, growing up, I was only allowed to watch tv for 1 hour a day IF I finished all of my homework and schoolwork related things first.

realsocialskills said:

It’s not the same (although it has similar elements and I’m not a huge fan of the extent to which behavior modification techniques are used with typically developing children either.)

Here’s the difference: Most children actually should do their homework, and most children have interests other than television. Typically developing children are allowed to be interested in things, and supported in pursuing interests without them becoming behavior modification tools.

(Another difference: intense behavior modification is used on adults with developmental disabilities in a way that would be considered a human rights violation if done to typically developing adults.)

Using behavior modification tools for one or two things in a child’s life isn’t the same as doing it with everything in someone’s life. Intense behavior therapy is a violation on a level that it’s hard to describe.

Intense behavior therapy of the type I’m talking about typically involves:

  • Being surrounded by people who think that you’re broken, that all of your natural behavior is unacceptable, and that you need to be made to look normal in order to have any hope of a decent future
  • Having completely harmless things you do pathologized and modified (eg: having hand flapping or discussing your interests described as “a barrier to inclusion”)
  • Having those things conflated with things you do that actually *are* a problem. (eg: calling both head banging and hand flapping “sensory seeking behavior” and using the same reinforcers to eliminate both) 
  • Being forced to stop doing things that are very important to you, by people who think that they are pointless and disgusting or “nonfunctional” (eg: using quotes from TV shows to communicate)
  • Being forced to do things that are completely arbitrary, over and over (eg: touching your nose or putting a blue ball in a red box)
  • Being forced to do things that are harmful to you, over and over (eg: maintaining eye contact even though it hurts and interferes with your ability to process information)
  • Having everything you care about being taken away and used to get compliance with your behavior program (eg: not being permitted to keep any of your toys in your room)

(Behavior therapy often also involves legitimate goals. That doesn’t make the methods acceptable, nor does it make the routine inclusion of illegitimate goals irrelevant.)

Here’s an explicit instruction from a behavior expert on how to figure out which reinforcers to use for autistic children:

Don’t assume that you know what a child with ASD likes. It is important to ask a child, observe a child or perform a preference assessment. When asking a child about reinforcers, remember that multiple reinforcement inventories can be found on the Internet.

You can also simply sit down with a child and ask them questions like “What do you like to do after school?” or “What’s your favorite food?"or "What toys do you like to play with?”

When observing a child, set up a controlled environment to include three distinct areas: food, toys, and sensory. Then allow the child somewhat free access to this environment.

Watch and record the area that the child goes to first. Record the specific items from this area that the child chooses. This item should be considered highly reinforcing to the child.

Continue this process until you have identified three to five items. Remember that simply looking at an item does not make it reinforcing, but actually playing with it or eating it would.

Notice how it doesn’t say anything about ethics, or about what it is and isn’t ok to restrict access to. This is about identifying what a child likes most, so that it can be taken away and used to get them to comply with a therapy program. (Here’s an example of a reinforcement inventory. Notice that some examples of possible reinforcers are: numbers, letters, and being read to). 

People who are subjected to this kind of thing learn that it’s not safe to share interests, because they will be used against them. That’s why, if someone has a developmental disability, asking about interests is often an intimate personal question.

This isn’t like being required to do your homework before you’re allowed to watch TV.

It’s more like:

  • Not being allowed to go to the weekly meeting of the science club unless you’ve refrained from complaining about the difficulty of your English homework for the past week

Or, even further:

  • Not being allowed to join after school clubs because you’re required to have daily after school sessions of behavior therapy during that time
  • In those sessions, you’re required to practice making eye contact
  • And also required to practice talking about socially expected topics of conversation for people of your age and gender, so that you will fit in and make friends
  • You’re not allowed to talk about science or anything else you’re actually interested in
  • You earn tokens for complying with the therapy
  • If you earn enough tokens, you can occasionally cash them in for a science book
  • That’s the only way you ever get access to science books

Or even further:

Being a 15 year old interested in writing and:

  • Being in self-contained special ed on the grounds that you’re autistic, your speech is atypical, and you were physically aggressive when you were eleven 
  • Having “readiness for inclusion” as a justification for your behavior plan
  • Having general education English class being used as a reinforcer for your behavior plan
  • Not being allowed to go to English class in the afternoon unless you’ve ~met your behavior targets~ in the morning
  • Not being allowed to write in the afternoon if you haven’t “earned” the “privilege” of going to class
  • eg: if you ask questions too often in the morning, you’re “talking out of turn” and not allowed to go to class or write in the afternoon
  • or if you move too much, you’re “having behaviors that interfere with inclusion”, and not allowed to go to class or write
  • or if you mention writing during your social skills lesson, you’re “perseverating” and not allowed to go to class or write

Or like: being four years old and not being allowed to have your teddy bear at bedtime unless you’ve earned 50 tokens and not lost them, and:

  • The only way to earn tokens is by playing in socially expected ways that are extremely dull to you, like:
  • Making pretend food in the play kitchen and offering it to adults with a smile, even though you have zero interest in doing so
  • You gain tokens for complying with adult instructions to hug them, touch your nose, or say arbitrary words within three seconds; you lose two for refusing or not doing so fast enough
  • You lose tokens for flapping your hands or lining up toys
  • You lose tokens for talking about your teddy bear or asking for it when you haven’t “earned” it
  • You lose tokens for looking upset or bored

Or, things like being two, and loving books, and:

  • Only having access to books during therapy sessions; never being allowed unscripted access to books
  • Adults read to you only when you’re complying with therapy instructions
  • They only read when you’ve pointed to a picture of a book to request it
  • You’re required to sit in a specific position during reading sessions. If you move out of it; the adult stops reading
  • If you rock back and forth; they stop reading
  • If you stop looking at the page; they stop reading
  • If you look at your hand; they stop reading
  • Adults interrupt the story to tell you to do arbitrary things like touch a picture or repeat a particular word. If you don’t; they close the book and stop reading.

Here are a few posts that show examples of the kind of thing I’m talking about:

tl;dr Intense behavior therapy has some things in common with methods that are used with typically developing kids, but it’s not actually the same. Intense behavior therapy involves violation and a degree of control that is not considered legitimate with typically developing children.

An example of both types of mental health stigma

Content note: This post contains both criticism of and respect for the mental health system. If you find either upsetting, it’s likely that this post will bother you.

I wrote recently about two distinct kinds of mental illness stigma. There’s dismissiveness, where people aggressively deny that someone’s mental illness is real. There’s dehumanization, where people believe that someone’s mental illness is real, and treat them as though their condition makes them less than fully human. Both are common, and people who have experienced one more than the other tend to have very different perceptions of the mental health system.

One example of difference in perception: Mental health advocates often say things like “Medication for mental illness is just like insulin for a diabetic”. People who have mostly faced dismissiveness often see this as validation; people who have mostly faced dehumanization often see it as a threat.

From the perspective of someone who has mostly experienced dismissiveness, it might sound like this:

  • I’m really glad that someone understands how serious my medical condition is
  • People have told me over and over that I don’t have a real problem
  • Or that medication is just a crutch I’m using to avoid dealing with things
  • Or that it’s whiny to want medication
  • Or they might say things like “You’re not sick. People with cancer are sick.”
  • My medication is really, really necessary
  • Or even: my medication saved my life, and I think I’d die if I stopped taking it.
  • I’ve had to fight my doctor, my family, or my insurance company to get access to the medication I need.
  • It messes up my life when people don’t take my need for medication seriously.
  • I’m glad someone gets it about how real my medical condition is, and how important it is for me to have access to medication.

For someone who has mostly faced dehumanization, a statement like that might sound more like this:

  • People have treated me like I’m not a person, and use analogies to physical conditions to justify it.
  • People have made me take medication I didn’t want to take, that did things to my brain and body that I didn’t like.
  • They’ve done this to me in order to change how I felt, thought, or behaved.
  • They’ve told me that what they were doing to me was just like giving insulin to a diabetic.
  • And that this meant I could not possibly have any valid reason to object to the treatment they wanted me to have.
  • But diabetes and mental illness aren’t actually all that similar.
  • Insulin-dependent diabetics who refuse treatment die. When I refused treatment, I didn’t die. It’s not the same. I’m not sick in that way.
  • The way I am is not the same as having a life-threatening physical condition with an obvious straightforward life-sustaining treatment.
  • It’s important that people understand the difference.
  • When they don’t understand the difference, they treat me as though I’m not a real person unless I am on the medication they want me to be on.
  • People say “unmedicated” like it means violent, dangerous, or incapable of understanding something. It doesn’t. It just means that someone isn’t taking medication. That doesn’t tell you anything in itself.
  • I need people to respect me as a person, and respect my right to make treatment decisions. When they don’t, things can get really bad really fast.

There are numerous other examples of things like this. Most things people say about mental health look very different to people who have primarily experienced dismissiveness than they do to people who have primarily experienced dehumanization. Neither perspective is right or wrong exactly; both are important and incomplete.

Access to psychiatric medication is important; respect for the humanity and human rights of people who have been diagnosed with mental health conditions is also important. Things aren’t great for anyone, and they could be a lot better for everyone.

tl;dr Mental health discourse often looks very different depending on perspective. People who have mostly faced dismissiveness tend to see things one way; people who have mostly faced dehumanization tend to see things a different way. Scroll up for a concrete example.

Responding to desexualization without hurting others

Content note: This post is about ableism and desexualization of adults with disabilities. It is highly likely to be triggering to some people who have experienced degrading desexualization, as well as to some people who have been sexually assaulted or otherwise had people violate their sexual boundaries.

Anonymous said to :

As an autistic person I often feel desexualised, and I don’t like it but I feel sorta uncomfortable stating it for some reason? How should I like, deal with this and enforce my sexuality without making people uncomfortable?

realsocialskills said:

This gets really complicated.

Being desexualized is awful, and it’s also really hard to talk about without sounding like you feel entitled to sexual or romantic attention from other people. Especially when you’re talking to people who’ve been on the receiving end of a lot of intrusive sexual attention and who aren’t aware that desexualization also happens and is also a problem.

Another complication is that many adults really are asexual or aromantic. That’s an ok way to be, and it’s important to acknowledge that those people exist and aren’t broken. Objecting to desexualization does not mean objecting to asexual people.

People who desexualize adults with disabilities in these ways aren’t recognizing asexual adulthood; they’re denying disabled adulthood and expressing it in sexual terms. (And this denial of adulthood expressed in sexual terms also hurts asexual adults).

I think that desexualization is when people refuse to acknowledge or respect some basic things:

  • That you’ve reached adulthood or you are a teenager
  • That you’re as likely as anyone else your age to experience romantic and sexual attraction
  • That if you are experiencing sexual and/or romantic attraction, it’s as significant and important as attraction anyone else experiences
  • If you want to, it’s completely appropriate for you to act on your sexual and romantic feelings (either with yourself or consenting other people)
    • You have the same right to physical, sexual, and emotional boundaries as anyone else

    People who desexualize you might treat you inappropriately in group dynamics, eg:

    • By assuming that you will never have a crush on anyone in your friend group
    • By assuming that you don’t date for real and will always be available to go to couple’s events with someone who is caught without a partner at the last minute
    • By saying things like “I hate men/women/whoever. You’re so lucky you don’t have to deal with dating them.“
    • Or like “It’s so great to talk to you about this stuff. I’m so tired of how everyone else is making the group awkward with their dating drama.”
    • Or venting to you about how hard it is for them to find a partner without considering that you might share this frustration, and that it’s probably harder for you than it is for them
    • Or making jokes about how you’re their ~boyfriend~/~girlfriend~, ignoring the possibility that you might want to be someone’s boyfriend or girlfriend and that you might, in fact, be attracted to them.

    People who desexualize you also sometimes don’t observe appropriate sexual boundaries, eg:

    • Assuming that rules of modesty don’t apply to you
    • Undressing in front of you (in a community in which it would normally be considered inappropriate for someone of their age and gender to undress in from of someone of your age and gender)
    • Touching you in ways that are considered inappropriately intimate in your social circles for people who are not romantically or sexually involved
    • Adopting suggestive poses or being inappropriately close (eg: by having their breasts or crotch way too close to your face)
    • (The rules of acceptable nudity, physical contact, and closeness are different in different cultures, and that’s fine. What’s not fine is having established rules of modesty/boundaries but ignoring them when interacting with disabled people)

    It’s ok to be angry about this kind of thing, and it’s ok to insist that people knock it off and treat you with more respect. It’s ok to expect people to respect your maturity, your romantic and sexual capacity, and your physical and emotional boundaries.

    For instance, it’s ok to say “I’m a grown man; you shouldn’t be changing in front of me,” or “I’m not your girlfriend; stop touching me like that,” or “I don’t want to go to that event with you unless it’s a real date,” or “I don’t like it when you make jokes about dating me,” or “I get crushes too you know.” This will probably make some people uncomfortable; and that’s ok. You don’t have to do all of the emotional labor of making social interactions comfortable; it’s ok to have boundaries even when other people don’t like them. It’s also ok to insist that people acknowledge and respect your age even if they’d rather see you as a child.

    It’s ok to be angry about people treating you badly in areas related to sexuality, and it’s ok to insist that they knock it off. It’s ok to be upset when you’re single and don’t want to be, and it’s ok to be upset about the role that ableism is playing in making it hard to find someone.

    It’s also important to be careful that this doesn’t turn into anger at people for having sexual boundaries of their own. It can easy for some people to become confused about this when start realizing that it’s ok to have sexual feelings, and not ok that others treat you as though your disability means your sexuality doesn’t count. If you’ve been treated as outside of legitimate sexuality for your whole life, you likely have missed opportunities to learn about consent and appropriate sexual and romantic interactions. That’s not your fault; it is your responsibility to address. Being the object of discrimination does not give you a free pass to violate other people’s boundaries, even if you’re not doing it on purpose.

    It’s important to keep in mind that no one is obligated to date you, sleep with you, allow you to touch them, consider dating you, justify their lack of interest in dating you, or anything else like that. (And that it’s not ok to hit on people if you’re in a position of power over them).

    You’re human, so it’s likely that you’re having some less-than-ideal feelings about this stuff some of the time. You might feel jealous, or upset, or even angry at people who haven’t really done anything wrong. (Because they’re dating visibly and you’re lonely, or because you asked them out and they said no, or other things like that which can hurt to see but aren’t their fault.) It’s ok if you’re feeling that way; you don’t have to have superhuman control of your feelings to treat people well. What’s important is that you don’t feed it, and that you don’t act on it.

    In particular, it’s important not to cultivate offense when people you’re interested in dating aren’t interested in you. That leads nowhere good. (eg: I got an ask about how to stand up to a person who was using disability as an excuse to grope people a while back.)

    Rejection sucks, and it sucks more when you’re already really lonely, and it sucks even more when you know that ableism is probably a major factor in why some people you’re attracted to aren’t interested. It can be really tempting when things are that hard to take offense. It’s important to stay aware that people who reject you aren’t wronging you, and to find constructive ways to deal with it that don’t involve contempt for the people you’re attracted to. (In particular, stay away from pick up artist communities. Adopting that worldview makes it much harder to learn about good consent and have respectful relationships).

    It’s also important to keep in mind that it’s ok for you to be sexual and to express interest in dating people. (Even if you encounter people who are profoundly uncomfortable with the idea of disabled people having and acting on sexual and romantic feelings. Those people are wrong.) Your sexuality is not ever the problem. (It’s possible sometimes that things you’re doing might be a problem, but having a sexuality is never a problem in itself.)

    In particular - if you ask someone out or hit on them and they say no, that doesn’t mean that you did something wrong. It just means that they aren’t interested. Asking people who turn out not to be interested is ok; asking is how you find out. You don’t have to be a mindreader in order for it to be ok to ask someone out.

    All of this can be really, really hard to navigate. I hope some of this helped.

    tl;dr Disabled adults and teenagers are often treated like children. People often express this in sexualized terms by assuming that disabled adults are all incapable of legitimate sexual expression. It’s awful to be on the receiving end of that. It’s also hard to talk about or object to effectively. Scroll up for more thoughts on how to navigate this.

    Doing what you must and feeling like you're faking

    content note: This post is about the broad (inaccurate) perception that people with disabilities are faking, and ways that forces some people with disabilities to partially misrepresent the exact nature of their disability. Proceed with caution. 


    Some people without disabilities believe that there are massive numbers of people faking disability, and that they must be caught and stopped. People who believe this usually don’t know very much about what disability actually looks like. They tend to assume that anyone with a disability who has non-stereotypical abilities is faking their disability. 


    Real disability often doesn’t look like stereotypical disability. For instance, many wheelchair users can walk, and many people who have service dogs can read, and many people have different abilities on different days depending on their energy and pain levels. This doesn’t mean that they are faking. It just means that their combination of abilities and disabilities don’t look like media tropes, because they are real people.


    People with non-stereotypical disabilities can be in a very difficult place when dealing with people who think this way. It’s a pervasive problem, and people with a misplaced dedication to rooting out fakers often have a lot of destructive power over people who need disability-related support.


    Being thought of as faking can mean that you lose accommodations. It can mean that you lose services that you need in order to survive. It can mean you get harassed. It can mean people are violent. 


    Sometimes, people with disabilities have no realistic option other than to allow people to believe that they fit these stereotypes: 


    Eg: 

    • On a college campus, every dorm except one is completely inaccessible.
    • The main entrance to the partially accessible dorm has stairs
    • There is an accessible entrance for employees and residents with disabilities, but it’s always locked
    • In order to get a key, you have to convince Fred the building manager that you need one
    • Fred is very suspicious of disability claims, and is constantly trying to catch people faking disability
    • Fred believes that anyone using a wheelchair who can walk, stand, or even move their legs, is a faker who needs to be called out and prevented from using accessibility resources (if you don’t know why he’s wrong, read this post)
    • Wheelchair users who need access to that building are careful to give Fred the impression that they are completely unable to walk or stand. They never stand in front of him, or in a place where he might turn up unexpected. They carefully avoid referencing their ability to stand to anyone who might repeat it to Fred. 
    • They may even have to outright lie about this in order to prevent Fred from taking away their access to the only door they can use. (eg: If Fred asks them directly, or rants about fakers, or makes them fill out an intrusive form).


    More generally:

    • Many, many people have strong attachments to stereotypical ideas about how disability works
    • They tend to think that people who don’t fit those stereotypes are faking disability
    • Most people with disabilities don’t fit disability stereotypes particularly well
    • It’s often dangerous for people with disabilities to be perceived as faking it
    • That’s a hard situation, because:
    • There may be times when you know that if you describe your abilities and access needs completely accurately, people are likely to think that you are faking
    • But if you somewhat misrepresent your abilities in a way that fits the stereotype, then they’ll believe you about your real access needs
    • Which can put you into the awkward position of having to choose between representing the nature of your disability fully accurately and being thought of as faking, or allowing people to inaccurately believe that you fit a stereotype and being believed
    • That’s degrading on a level it’s hard to understand if you haven’t experienced it
    • It’s also a common experience among people with disabilities, and if that’s what you’re dealing with, it’s not your fault.

    Some additional examples:

    • Some people who can write a little bit by hand are careful not to write in front of most people, so they they will not be assumed to be capable of the kind of writing that is completely impossible for them
    • Some people who are not autistic but have similar support needs due to less well-known conditions end up with an inaccurate autism diagnosis in order to gain access to services that they absolutely need in order to access education or to survive
    • Some people with both physical and cognitive disabilities allow others to assume that they are more physically disabled than they really are as a way of getting their cognitive access needs met without having to face certain kinds of cognitive ableism
    • Some people who can speak only a few words are careful to avoid speaking in front of most people, lest someone decide to take away the communication system they need to communicate things that can’t be expressed in their few spoken words

    If you have a disability and you are not free to describe it fully accurately lest you lose accommodations, lose services, or face frightening harassment, know that you are not alone. A lot of people with disabilities experience this at some point or other. It’s humiliating and corrosive to go through, and it may make you feel like you are faking or that your needs are imaginary. It helps to remember that this is not actually your fault.


    You are not faking, and your needs matter. You are a real person with a real disability doing the best you can in a hostile world. You are not alone, and it helps to remember that. There are other people with disabilities who are there, or who have been there, who understand that struggle.


    tl;dr People with disabilities are often forced to pretend to meet stereotypes in order to get their very real needs met. This is humiliating and degrading. If you’re dealing with that, it’s not your fault and you’re not alone.

    Document communication

    This post may not apply to all of you, but I know a lot of you work with people whose communication is impaired, so:

    I’ve come to believe that if others are reporting that someone has no communication, it is important for others responsible for their care to do everything in their power to counteract this.

    Being perceived as noncommunicating is dangerous. It can prevent someone from ever being listened to. It can also lead ableists to withhold medically necessary care because they believe that person’s life is not worth living. 

    You can’t reliably assess someone’s receptive communication unless they have expressive communication that you can understand (and even then, it’s difficult). Being unable to respond is not the same as having no understanding, and it’s wrong to assume that people don’t understand. So, really, no living person should ever be described as having no communication. That may not be in your power to fix, but keeping it in mind will help you to treat people better.

    Beyond that, most people who are described as having no expressive communication actually do. Don’t be led astray by someone else saying that someone is “noncommunicative” or “nonverbal”. Unless the person they’re talking about is in a coma, they’re probably wrong. If you look for communication, you will be able to listen to them better, and also better able to protect them by documenting their communication. So look for it, and document it, and tell other people who care for them. Their life may depend on it, and the way they’re treated almost certainly does.

    Some specific things you can look for:

    • Do they turn their head when you come in?
    • Flap their hands when they’re angry or happy?
    • Vocalize?
    • Say words that may or may not be communicative? 
    • Try to get out of their chair?
    • Sing?
    • Become more calm or agitated when you speak to them?
    • Make eye contact?
    • Say numbers?
    • (There are any number of other things)

    Everyone with voluntary control over any part of their body communicates. If you’re working with someone, learn their communication and do what you can to make it known that their communication exists and matters.

    walkingsaladshooterfromheaven:

    Nice Lady Therapists

    realsocialskills:

    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…

    walkingsaladshooterfromheaven said:

    Not therapists specifically but other women in “helping” roles, particularly teachers/education professionals, have been this way to me.

    In varying ways and to varying degrees. But there is a dynamic there.

    It’s a “What I’m doing to you is for your own good and I’m being sweet and nice about it so you have no right to complain” sort of thing.

    It’s subtle disrespect and dehumanization, in which they completely deny that that’s what they’re doing to you. It’s very gaslighty. And it is an attitude that is frequently encouraged among female education professionals.

    It’s so terrifyingly ubiquitous and there are so very few guaranteed safe spaces from it.

    Even women who do not normally have this attitude can take it on if they feel like you are being enough of a Problem to warrant it.

    realsocialskills said:

    Yes. As though being nice is a tone of voice, and that it does not require actual respect.

    Note to fellow feminists

    We need to stop assuming that women who are nonfeminist or antifeminist are just stupid and brainwashed by men.

    They are women who disagree with us.

    Feminism ought to be about respecting women. Not just women who agree with us. Feminist attitudes towards women who disagree with us can get really sexist and belittling really fast, and that’s not ok.

    We don’t have to agree with everything other women believe; we don’t have to respect every opinion just because it’s held by a woman.

    But we do need to respect other women as people who have opinions and think for themselves. They are not patriarchy objects. They are *people*. People who have beliefs and opinions. Even when they are wrong.