covert ableism

Manipulative fake apologies

Some apologies amount to someone asking for permission to keep doing something bad.

  • These apologies generally shouldn’t be accepted.
  • (But it can be really hard not to, because who want permission to do bad things tend to lash out when they don’t get it.)
  • (If you have to accept a bad apology to protect yourself, it’s not your fault.)

Eg:

  • Moe: “I’m sorry, I know this is my privileged male opinion talking but…”
  • Or, Moe: “I’m sorry, I know I’m kind of a creeper…” or “I’m sorry, I know I’m standing too close but…”
  • At this point, Sarah may feel pressured to say “It’s ok.”
  • If Sarah says, “Actually, it’s not ok. Please back off” or “Yes, you’re mansplaining, please knock it off”, Moe is likely to get angry.
  • The thing is, it’s not ok, and Moe has no intention of stopping. 
  • Moe is just apologizing in order to feel ok about doing something he knows is wrong.

Another example:

  • Sam is a wheelchair user. He’s trying to get through a door.
  • Mary sees him and decides that he needs help.
  • Mary rushes to open the door. As she does so, she says “Oh, sorry, I know I’m supposed to ask first”, with an expectant pause. 
  • At this point, Sam may feel pressured to say “It’s ok”, even if the ‘help’ is unwanted and unhelpful. 
  • If Sam says, “Yes, you should have asked first. You’re in my way. Please move”, Mary is likely to get angry and say “I was just trying to help!”.
  • In this situation, Mary wasn’t really apologizing. She was asking Sam to give her permission to do something she knows is wrong.

More generally:

  • Fake Apologizer: *does something they know the other person will object to*.
  • Fake Apologizer: “Oh, I’m sorry. I know I’m doing The Bad Thing…” or “I guess you’re going to be mad if I…”
  • Fake Apologizer: *expectant pause*
  • The Target is then supposed to feel pressured to say something like “That’s ok”, or “I know you mean well”, or “You’re a good person, so it’s ok for you to do The Bad Thing.”

If the Target doesn’t respond by giving the Fake Apologizer permission/validation, the Fake Apologizer will often lash out. This sometimes escalates in stages, along the lines of:

  • Fake Apologizer: I *said* I was sorry!
  • Fake Apologizer: *expectant pause*
  • The Target is then supposed to feel pressure to be grateful to the Fake Apologizer for apologizing, and then as a reward, give them permission to do The Bad Thing. (Or apologize for not letting them do The Bad Thing.)
  • If the Target doesn’t respond in the way the Fake Apologizer wants, they will often escalate to intense personal insults, or even overt threats, eg:
  • Fake Apologizer: I guess you’re just too bitter and broken inside to accept my good intentions. I hope you get the help you need. And/or:
  • Fake Apologizer: Ok, fine. I’ll never try to do anything for you ever again. And/or
  • Fake Apologizer: *storms off, and slams the door in a way that causes the person who refused their intrusive help to fall over*.

Tl;dr Sometimes what looks like an apology is really a manipulative demand for validation and permission to do something bad.

Image description: Text "Manipulative fake apologies" next to a picture of a man with flowers an an affected apology facial expression.

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.

ASL is a language

American Sign Language and other signed languages are languages. It’s important to respect them as languages.

ASL is not English. It is a completely different language. Similarly, signed languages aren’t all the same. British Sign Language is completely different from ASL.

Signs are not universal, any more than spoken words are universal. The meaning of a sign isn’t always obvious just by watching; many signs are completely arbitrary.

Sign is not pantomime, and it’s not ad hoc gesture. It’s also not like symbolic gestures that are sometimes made up to accompany kids songs either. It’s a language, with all the complexities of language. The difference is important, and it needs to be respected. 

In order to know what signs mean, you have to learn them. (Just like in order to know what spoken words mean, you have to learn them.)

ASL is not just gestures, any more than spoken languages are just sounds. ASL has grammar, vocabulary, and culture. It’s important to respect this and not erase it.  

“How do you know?”

“How do you know?” is a really useful question.

People often assert things very confidently, without giving a reason. Sometimes it’s easy to respond to their confidence automatically, and believe them without thinking about it. Which can lead to a lot of mistakes.

The question “How do you know?” can be very helpful. Sometimes it’s something you can ask directly — some people are very receptive, and will think about their reasons and give you a good answer. Sometimes they know their reasons; sometimes they haven’t thought about it before and do think about it when you ask the question.

Some people don’t respond well to that kind of question, and asking isn’t always a good idea. But you can still ask yourself the question. Sometimes thinking to yourself “How do they know?” helps. Sometimes thinking to yourself “How do I know whether or not that’s true?” helps.

For instance:
Therapist: My client is engaging in a lot of attention-seeking behavior.
You: How do you know she’s doing it for attention?
Or you to yourself: How does he know she’s doing it for attention?
Or you to yourself: How do I know if he’s reporting her motivations accurately?

Or: 
Teacher: This shard of pottery shows a king walking a dog. We can learn from this that dogs were associated with high status.
You: How do you know that it’s a king in the picture?
Or you to yourself: How do we know whether crowns meant kings?
Or you to yourself: How do I know if the teacher is right about this being a picture of a king walking a dog?

tl;dr Sometimes it can be easy to believe someone because they sound confident. One way around this is to get into the habit of asking “How do you know” or asking yourself “How do they know?” or asking yourself “How do I know if they’re right?”

Ableist hostility disguised as friendliness

Some people relate to people with disabilities in a dangerous and confusing way. They see themselves as helpers, and at first they seem to really like the person. Then the helper suddenly become aggressively hostile, and angry about the disabled person’s limitations or personality (even though they have not changed in any significant way since they started spending time together). Often, this is because the helper expected their wonderful attention to erase all of the person’s limitations, and they get angry when it doesn’t.

The logic works something like this:

  • The helper thinks that they’re looking past the disability and seeing the “real person” underneath.
  • They expect that their kindness  will allow the “real person” to emerge from the shell of disability.
  • They really like “real person” they think they are seeing, and they’re excited about their future plans for when that person emerges.
  • But the “real person” is actually figment of their imagination.

The disabled person is already real:

  • The helper doesn’t like this already-real disabled person very much
  • The helper ignores most of what the already-real person actually says, does, thinks, and feels.
  • They’re looking past the already-real person, and seeing the ghost of someone they’d like better.

This ends poorly:

  • The already-real person never turns into the ghost the helper is imagining
  • Disability stays important; it doesn’t go away when a helper tries to imagine it out of existence
  • Neither do all of the things the already-real disabled person thinks, feels, believes, and decides
  • They are who they are; the helper’s wishful thinking doesn’t turn them into someone else
  • The helper eventually notices that the already-real person isn’t becoming the ghost that they’ve been imagining
  • When the helper stop imagining the ghost, they notice that the already-real person is constantly doing, saying, feeling, believing, and deciding things that the helper hates
  • Then the helper gets furious and becomes openly hostile

The helper has actually been hostile to the disabled person the whole time

  • They never wanted to spend time around the already-real disabled person; they wanted someone else
  • (They probably didn’t realize this)
  • At first, they tried to make the already-real disabled person go away by imagining that they were someone else
  • (And by being kind to that imaginary person)
  • When they stop believing in the imaginary person, they become openly hostile to the real person

Tl;dr Sometimes ableist hostility doesn’t look like hostility at first. Sometimes people who are unable or unwilling to respect disabled people seem friendly at first. They try to look past disability, and they interact with an imaginary nondisabled person instead of the real disabled person. They’re kind to the person they’re imagining, even though they find the real person completely unacceptable. Eventually they notice the real person and become openly hostile. The disabled person’s behavior has not changed; the ableist’s perception of it has. When someone does this to you, it can be very confusing — you were open about your disability from the beginning, and it seemed like they were ok with that, until they suddenly weren’t. If this has happened to you, you are not alone.

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.

Advocacy is not cute

Sometimes disabled people get treated like they’re not adults. 

This is particularly true when people with disabilities are involved in disability related advocacy. And it goes triple for people who have intellectual disabilities. (Or are perceived to.)

If you’re doing advocacy and someone treats it as cute, they’re being rude. If someone treats your presentation like a game you’re playing, they’re being rude. People should have more respect than that, even if they disagree with the point you are making. 

If you think someone else’s advocacy is cute, it’s probably important to work on learning to respect them more.

Accessibility is more valuable than paper

Sometimes, when organizations need to make hard copies of things, they try to save paper by making the print tiny. This is an accessibility problem.

For example:

  • Printing copies of a song you want to teach in a small font so that you can get four copies out of a single piece of paper
  • Reducing the size of a flier so you can fit four on a page
  • Passing out sheets of instructions in very small print

This does save paper. It also excludes a lot of people. Not everyone can read 8 point text. Most people above a certain age can’t read that, and many younger people can’t either. Those people matter more than a few sheets of paper.

If it’s important enough to make copies, it’s important to make copies that everyone who needs the information can read.

If you must make the copies small, make a few large copies available for people who need them.

Nice Lady Therapists

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

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

Anyway, here goes:

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

 

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

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

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

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

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

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

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

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

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

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

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

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

I’m not sure what else to say about this today. I think that there is a lot that needs saying (and I hope I will find some of it in the comments.) Any of y'all want to weigh in?

“I hope that I will live one heartbeat longer than she does”

Content warning: This post is about sentiments leading to murder of people with disabilities. Proceed with caution.

At an autism conference recently, I heard the father of a 20 year old autistic man say in his speech to the whole conference, “I hope to live one heartbeat longer than he does. I’m sure many of you feel the same way about your children.”

That sentiment gets people killed. If you are the parent of a disabled child and you say things like this, it is a matter of life-and-death importance that you stop talking this way. The father who said this is probably entirely correct that many of the other parents in the audience felt the same way. I have heard this sentiment expressed by many other parents of children with disabilities (not just autism.)

Parents who hope to outlive their autistic children are talking about people who, barring tragedy, will almost certainly outlive their parents. Autism does not limit lifespan; most autistic people should live to be old. If you hope to outlive your autistic child, it means that you are hoping that their life will be tragically cut short. It means you think they’re better off dead than they would be living without you. That’s dangerous.

It’s not true. Nobody is better off dead. It is not a blessing to die young. Expressing a desire for someone to die young is not love. (People who say this may well love their children in other ways, but this sentiment is not love.)

Please stop implying that your child will be unable to live and be happy after you die. People just like your child live on in adulthood after their parents die, and your child can too. And they will have a much easier time of it if you accept that they will outlive you, and help them to prepare for their life without you.

The only way it’s likely to live a heartbeat longer than your autistic child is if you kill them and then yourself. Many parents who feel this way do exactly that. And, even if you would never kill your child, people who are considering committing murder can hear what you say. If you say that you hope to live a heartbeat longer than your child, it makes the murder that is the only way this can plausibly happen seem like a much more legitimate choice. Don’t give potential murders that kind of encouragement.

In the disability community, we observe a day of mourning and read a list of people with disabilities murdered by caregivers.

The list is long. And it’s only a list of the names we know. There are many others who died without making the news. 

I hope and pray that your child never ends up on this list. I hope and pray that they outlive you and have a happy and meaningful adulthood. I hope and pray that this list never gets any longer. 

One murder is too many. Not ever again.

Under the cut is the (as of this post) current list of the names we know. In loving memory; may these murders be the last:

  • Tracy Latimer, 12 years old, gassed by her father in 1993
  • Charles-Antoine Blais,  6 years old, drowned by his mother in November 1996
  • Casey Albury, 17 years old, strangled by her mother in 1997
  • Pierre Pasquiou, 10 years old, pushed into the sea by his mother in 1998
  • Jim Helm, 27 years old, killed by his mother in a murder-suicide in November 1998
  • Daniel Leubner, 13 years old, burned alive by his mother in September 1999
  • James Joseph Cummings Jr, 46 years old, stabbed to death by his father in the institution where he lived in November 1999
  • Justin Malphus, 5 years old, beaten and drowned by his mother in April 2000
  • Gabriel Britt,  6 years old, suffocated by his father in March 2001
  • Johnny Churchi, 13 years old, strangled by his mother in 2001
  • Mark Owen Young, 11 years old, poisoned and then pushed off a bridge by his mother in a murder-suicide, September 2001
  • Brahim Dukes, 18 years old, starved by his stepmother in December 2001
  • Lilian Leilani Gill, 4 years old, strangled by her adoptive mother in March 2002
  •  Mitchell Dickson, 10 years old, slashed to death by his mother in June 2002
  • Dale Bartolome, 27 years old, killed by his father in a murder-suicide in July 2002
  • Jason Dawes, 10 years old, suffocated by his mother in August 2003
  • Maggie Caraballo, 38 years old, beaten to death by her sister in August 2003
  • Angelica Auriemma, 20 years old, drowned by her mother who first tried to electrocute her to death in 2003
  • Scott Olsen, 29 years old, starved to death by his sister in December 2003
  • Eric Bland, 38 years old, starved to death by his sister in March 2004
  • Scarlett Chen, 4 years old, drowned by her mother in July 2004
  • Patrick Markcrow, 36 years old, drugged and suffocated by his mother in March 2005
  • Tiffany Pinckney, 23 years old, locked in a basement and starved to death by her sister and brother-in-law in April 2005
  • Sarah Naylor, 27 years old, shot by her mother in a murder-suicide in September 2005
  • Ryan Davies, 12 years old, drowned after his mother caused him to fall off of a bridge in a murder-suicide
  • Christopher DeGroot, 19 years old, died of severe burns after he was locked in his parents’ apartment alone during a fire in May 2006
  • Katie McCarron, 3 years old, suffocated by her mother in May 2006
  • William Lash III, 12 years old, shot by his father in a murder-suicide in July 2006
  • Lakesha Victor, 10 years old, starved by her mother in August 2006
  • Marcus Fiesel, 4 years old, wrapped in heavy blankets by his foster parents and left in a closet to suffocate while they went out of town in August 2006
  • Ulysses Stable, 12 years old, throat slit by his father in November 2006
  • Brandon Williams, 5 years old, poisoned and beaten to death by his mother in March 2007
  • Criste Reimer, 47 years old, thrown from a balcony by her husband in 2007
  • Jared Greenwood, 26 years old, died of infected bed sores after being left in place and neglected by his mother in 2007
  • Francecca Hardwick, 18 years old, locked in a burning car with her mother in a murder-suicide in October 2007
  • Naomi Hill, 4 years old, drowned by her mother in November 2007
  • Shellay Ward, 7 years old, starved and neglected by her parents in November 2007
  • Maxwell Eyer, 2 years old, beaten to death by his father in December 2007
  • Xiao Fei, 20 years old, poisoned and suffocated by her mother in 2008
  • Calista Springer, 16 years old, chained to a bed and abandoned in a fire by her entire family in 2008
  • Courtney Wise, 17 years old, starved to death by her mother in February 2008
  • Ethan Scott Kirby, 3 years old, beaten to death by his mother’s boyfriend in August 2008
  • Jacob Grabe, 13 years old, shot by his father in 2008
  • Tom Inglis, 22 years old, died after his mother administered an overdose of heroin to him in November 2008
  • Christian Clay Jenkins, 14 years old, given an overdose of oxycodone by his father in 2008
  • Kyle Dutter, 12 years old, shot by his father in a murder-suicide in 2008
  • Lexie Agyepong-Glover, 13 years old, left in a frigid creek by her mother and died of drowning and exposure in 2009
  • Terrell Stepney, 19 years old, poisoned by his grandmother in a murder-suicide in 2009
  • Jeremy Fraser, 9 years old, died of recurrent leukemia after his mother withheld the medication that would have saved his life in March 2009
  • Shylea Myza Thomas, 9 years old, starved to death by her aunt, who then hid her body in order to continue to collect money she received for Shylea’s care in April 2009
  • Pamela Camille Hall, 59 years old, stabbed by her son-in-law in April 2009
  • Lloyd Yarbrough, 62 years old, fed an overdose of prescription medication through his feeding tube by his wife in May 2009
  • Jeremy Bostick, 11 years old, gassed by his father in 2009
  • Peter Eitzen, 16, stabbed by his mother in July 2009
  • Tony Khor, 15 years old, strangled by his mother in October 2009
  • Betty Anne Gagnon, 48 years old, tortured to death by her sister and brother-in-law in November 2009
  • Walter Knox Hildebrand Jr, 20 years old, died of a seizure induced by his brother’s physical abuse in November 2009
  • Laura Cummings, 23 years old, raped and tortured to death by her mother and brother in January 2010
  • Jude Mirra, 8 years old, forced by his mother to overdose on prescription medications in February 2010
  • Ajit Singh, 12 years old, forced by his mother to drink bleach in February 2010
  • Gerren Isgrigg, 6 years old, died of exposure after his grandmother abandoned him in a remote area in April 2010
  • Leosha Barnett, 17 years old, starved to death by her mother and sister in May 2010
  • Glen Freaney, 11 years old, strangled by his mother in May 2010
  • Payton Ettinger, 4 years old, starved by his mother in May 2010
  • Christopher Melton, 18, gassed by his mother in a murder-suicide in June 2010
  • Rylan Rochester, 6 months old, suffocated by his mother in June 2010 because she believed him to be autistic
  • Kenneth Holmes, 12 years old, shot by his mother in a murder-suicide in July 2010
  • Zain Akhter, 5 years old, and Faryaal Akhter, 2 years old, strangled by their mother after she first tried to get them to drink bathroom cleaner in July 2010
  • Emily Belle Molin, 85 years old, hit and run over with a car by her son in August 2010
  • Rohit Singh, 7 years old, beaten to death by his father in September 2010
  • Zahra Baker, 10 years old, murdered and dismembered by her stepmother and perhaps her father in October 2010
  • Chase Ogden, 13 years old, shot by his mother in a murder-suicide in October 2010
  • Karandeep Arora, 18 years old, suffocated by his parents in October 2010
  • Donald Parojinog, 83 years old, starved by his daughter in January 2011
  • Chad Jackson, 25 years old, starved and neglected by his mother in July 2011
  • Julie Cirella, 8 years old, poisoned by her mother in July 2011
  • Joseph Conant, 11 years old, and Nacuma Conant, 33 years old, shot by their father/brother in July 2011
  • Noe Medina Jr, 7 months old, thrown 4 stories by his mother in August 2011
  • Benjamin Barnhard, 13 year old, shot by his mother in a murder-suicide in August 2011
  • Jori Lirette, 7 years old, decapitated by his father in August 2011
  • George Hodgins, 22 years old, shot by his mother in a murder-suicide in March 2012
  • Daniel Corby, 4 years old, drowned by his mother in March 2012
  • Malea Blakely-Berry, 16 years old, starved by her mother in June 2012
  • Matthew Graville, 27 years old, tortured and beaten to death by his half-brother in July 2012
  • Melissa Stoddard, 11 years old, suffocated in restraints that her father and step-mother routinely used in December 2012
  • Robert Gensiak, 32 years old, starved by his mother and sisters in March 2013
  • Alex Spourdalakis, 14 years old, poisoned and stabbed by his mother and godmother in June 2013
  • Matthew Hafer, 28 years old, poisoned by his mother in July 2013
  • Marian Roberts, 57 years old, shot by her father in a murder-suicide in August 2013
  • Jaelen Edge, 13 years old, poisoned by his mother along with his sister Faith in September 2013
  • Tamiyah Audain, 12 years old, starved, abused and neglected by her cousin in September 2013
  • Dameian “Luke” Gulley, 14 years old, strangled by his stepfather in November 2013
  • Randle Barrow, 8 years old, drowned by his mother in a murder-suicide in December 2013
  • Mickey Liposchok, 52 years old, shot by his father in a murder-suicide in December 2013
  • Damien Veraghen, 9 years old, poisoned and suffocated by his mother in a murder-suicide in January 2014
  • Vincent Phan, 24 years old, shot by his mother in a murder-suicide in January 2014

“You have so much potential!”

On the topic of degrading things that well-meaning people tend to say to people with disabilities:

  • “You have so much potential!”
  • “I truly believe in your potential!”

These can seem innocent, and sometimes it can be a benevolent thing to say. But when you hear it all the time, it becomes degrading.

When everyone you encounter is willing to acknowledge your potential, but no one is willing to acknowledge your accomplishments, it’s hard to believe in yourself. When all people see is your potential, it can be as though they are saying “don’t worry, it’s ok that you’ve never done anything worthwhile, you will someday.”

Hearing that year after year from people whose opinion you value is corrosive. It can make it really, really hard to see that you’ve ever done anything or that you have any abilities that count.

But, everyone in this world has accomplished things that are worth noticing. You are not an exception. You have done things, and the things that you have done matter. Even if nothing you do has radically changed the world. Even if you haven’t out-competed anyone. Even if you’re far below grade level, or unemployable, or struggling greatly. Even if you can’t get out of bed most days or at all. You have done things, and you deserve to have them respected.

If you are working with, supporting, or close to someone with a disability, make sure you are acknowledging their accomplishments that they have already made. Don’t just reassure them that they will do things some day. They have already done things, and they deserve to have their accomplishments respected.

And if you are a disabled person, remember that your accomplishments are real even if no one notices them or takes them seriously. The people who have taught you not to value your accomplishments are wrong. You have done things. Honor them.

Stop using mental illness as an insult

So, there’s this pattern. People hear about someone doing a horrible thing, or being systemically abusive to another person, or being bigoted, or being generally hateful, violent, or evil, and then express their disapproval by saying things like:

  • She *needs help*
  • He needs serious therapy
  • I hope he gets the help she needs

And, that’s a horrible thing to say. Because mental illness is not the same as being an abuser. Having a mental illness is not a moral failing, and treating others horribly is not a mental illness. Conflating those categories hurts people badly.

Some people do need therapy, medication, or other forms of treatment. Some people who need mental health treatment are also terrible people, but that is not because of their mental illness. It’s because of their choices and values. And many abusers and other dangerous people are not mentally ill at all.

Many, many good people struggle with serious mental illness and depend on medical treatment. Similarly, many good people struggle with mental illness and have no access to treatment for various reasons (eg: lack of insurance, lack of safe providers, fear of losing their jobs due to stigma). These people deserve better than to have their struggles thrown up as a way to insult abusers.

Mental illness is real, serious, and horribly stigmatized. It is not the same as being an abuser, and it’s really important to stop equating the two.

Clarification regarding praise as a red flag

Obviously people don’t badmouth their organization to outsiders their organization is trying to recruit; doing so is unprofessional.

I’m talking about a different thing.

The thing where staff spend an extraordinary amount of time praising the organization and press people it serves to do so as well.

And in which it’s really hard to find any criticism *anywhere*, and where people are really forcefully saying how great it is, in a way that goes way beyond professionalism and recruitment spin.

Does anyone know a better way to describe the thing I’m talking about?

The darker side of a happy affect

The darker side of a happy affect

Some people seem to be happy all the time.

Some people never seem upset, and never seem to mind anything that happens to them.

This is often praised, especially when it’s the affect of people with severe disabilities (intellectual or otherwise).

But, it really isn’t a good thing

Stuff bothers people sometimes. Stuff *should* bother people sometimes. 

And if someone seems to be be happy all the time, it means that they’ve been taught that they’re not allowed to be upset, and they’re not allowed to object to anything or mind anything that’s done to them, ever. 
It means that, not only are they not allowed to say no, they’re not allowed to even want to say no, or give any indication that they’re not ok with something. 


If you spend a lot of time interacting with someone, and nothing seems to bother them, and they never say no to anything, then you should assume that something is wrong and start actively looking for ways to make it possible for them to say no to you and express preferences to you.