Tag: childhood therapy

Open letter to sick kids and disabled kids.

Real Social Skills

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.

Open letter to disability professionals

Real Social Skills

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.

Nice Lady Therapists

Real Social Skills

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.