Sometimes things suck

Sometimes things suck.

Looking on the bright side doesn’t always help. Positive thinking doesn’t always help. Gratitude and mindfulness don’t always help. Those things help in some situations, but they’re not a universal cure that will fix everything.

Noticing that things suck isn’t what makes them suck, and pretending that things are ok will not make them better. 

Sometimes people act like it’s your fault for noticing, like if you’d just have a positive attitude, nothing would be bad. But it doesn’t work that way. Taking a positive attitude only fixes things when your attitude is the problem. Sometimes it isn’t.

Sometimes things really are that bad, and it’s ok to acknowledge that they are that bad. When things are actually bad externally, being realistic about what’s going on can make things a lot easier to manage. 

(Even if, right now, you can’t see any way to make them better.)

There are different kinds of neutrality.

Content note: this post uses examples involving people doing awful things to explain why neutrality can be bad

One kind of neutrality is fake. It pretends to be a matter of principle. People who do this aggressively object to taking sides, and push you to see all sides as equally valid. That’s a bad attitude to take because sometimes the sides to a conflict aren’t equally valid.

For instance, when someone asks a guy to stop hitting on her and he gets offended, there are not two valid sides. When a parent deprives a child of food, there are not two valid sides. When people claim that vaccines cause autism, refuse to vaccinate, and cause outbreaks of preventable diseases, there are not two valid sides. Pretending that there are two valid sides ends up making you complicit in harm done to people who are being hurt.

But that is not the only kind of neutrality. Not all kinds of neutrality are objectionable. It is often ok to stay out of things. Sometimes you’re in them and there’s no way to be neutral that isn’t effectively taking a side by default. But sometimes you can actually stay out of them.

Sometimes neutrality means recognizing that you don’t understand an issue, and choosing to stay out of it, at least for now. A lot of stuff is really complicated to understand. No one can understand every issue where there are sides.

For example:

  • If you’re not in a position to be making military decisions or foreign policy, it’s ok to decide you don’t understand a certain conflict and be neutral about it (so long as you’re not pressuring other people to think it’s wrong to take sides)
  • If you don’t understand a piece of legislation, it’s often ok to not have an opinion on it, even if it’s related to an issue that’s important to your community (unless it’s in some way your job to understand it, eg: if you run an advocacy organization.)

It’s ok to stay out of many things, if you’re not in a position in which you have a heightened obligation to take a side because you have specific responsibility for what happens. Nobody understands everything important; nobody *can* understand everything important. You don’t have to drop everything until you feel up to taking a position on every issue that someone in your life cares about.

Another kind of neutrality is offering certain kinds of help to people who meet certain criteria, or even anyone who asks, without regard to who they are, what they’ve done, and without taking a position on whether they deserve it. That can be a good thing, or a bad thing, in ways that I’m not sure how to explain.

For example:

  • Operating a food bank and giving food to anyone who needs it
  • Advocating for better conditions in prisons for all prisoners, even those convicted of awful things, without investigating to see how strong the evidence is that the people you’re protecting did awful things

Short version: Neutrality means a lot of different things. Some are good, some are bad. Sometimes it’s ok to stay out of things. It’s not ok to aggressively insist that there are always two sides to everything or to refuse to ever take sides on anything as a matter of principle.

Setting the stage for disclosure of awkward or stigmatized things

Free speech includes the right to set editorial policy

Freedom of speech and freedom of the press are about having the right to choose what you say. Part of this means being able to say what you want to say; an equally important part of free speech means the right to refrain from saying things you *don’t* want to say.

And, in a broader sense, this includes editorial policy. If you publish a magazine, you make choices about which articles to include and which articles to reject. That’s an essential part of what a magazine is. A magazine has a certain topic and point of view, expressed as much in what it does not publish as what it does.

For example:

  • Socialist journals do not publish articles in defense of capitalism
  • Medical journals do not publish articles that have not passed peer review
  • Jewish community newsletters do not publish arguments for conversion to Christianity

The fact that these types of publications only publish things that support their mission and policy is not a violation of free speech; it is an *expression* of free speech.

This is as true on the internet as it is in print media.

Deciding what to put on your website, and what *not* to put on your website, is part of how you exercise your free speech. That includes things like:

  • Posting about things you want to post about
  • Not posting about things you don’t want to post about
  • Responding to responses to your writing that you want to engage with
  • Not engaging with responses you prefer not to respond to
  • Making decision about whether you want to have comments, and if so, which kind of comments to allow

No matter what choices you make about these things on the internet, someone will accuse you of censorship and insist that their right to free speech means that you have an obligation to publish their opinions. It doesn’t. Their right to freedom of speech is about what *they* say; it does not give them the right to make *you* say anything, or to publish them, or to pay attention to them.

Free speech means you have the right to say what you want to say, and to refrain from saying things that you do not want to say.

You don’t have to like being disabled

This is what I think disability acceptance means:

  • Facing what your abilities are and aren’t
  • Accepting yourself as already having value
  • Living your life now and doing things you care about.
  • Not putting your life on hold waiting for a cure

But, some kinds of acceptance talk end up putting destructive kinds of pressure on people. And I think:

  • It’s ok to like or dislike being disabled. It’s ok to like some aspects of your condition but not others
  • It’s ok to want treatment and to be frustrated that it isn’t available
  • It’s ok to pursue treatment that *is* available
  • It’s ok to work hard to gain or keep certain physical or cognitive abilities, and to be happy or proud that you have them
  • It’s ok to decide that some abilities aren’t worth keeping, and to be happy or proud about moving on from them
  • All of those things are very personal choices, and no one’s business but your own
  • None of them are betrayals of acceptance or other disabled people

The point of acceptance is to get past magical thinking.

It means seeing yourself as you actually are, without being consumed by either tragedy or the need to focus on overcoming disability. It means accepting where you are, and living now, without putting your life on hold waiting for a cure.

Acceptance creates abilities. Acceptance makes it easier to be happy and to make good decisions. But acceptance does not solve everything, and it does not come with an obligation to love absolutely every aspect of being disabled.

Acceptance is the opposite of giving up

I’ve seen a disconnect between parents and self-advocates when we talk about disability acceptance:

  • Advocate: Disability acceptance is really important. Disability is part of who I am.
  • Parent: You mean I should just accept that my kid is suffering and can’t do anything and not even try to help them?!
  • Or, even worse: Yes, it is. My kid is my special little pillow angel and I love her just the way she is. It’s great having a kid who will never grow up.

By acceptance, we do not mean either of those things. What we mean is more like this:

  • Kids whose development is atypical get treated like they’re failing before they’re even old enough for kindergarten. (See all those checklists that say “by the time your child is 2, he or she should be…”, and think about what it’s like for a child’s earliest memories to involve adults thinking they were failing)
  • Being disabled isn’t a failure, and it shouldn’t be seen as one. There is no should in development, and there is no should in bodies.
  • Childhood isn’t something you can flunk
  • Magical thinking will not help, and neither will centering your life around searching for a cure
  • Children with disabilities who live to adulthood usually become adults with disabilities
  • They need to be prepared for disabled adulthood, not encouraged to think that if they work hard enough they will be normal
  • It is ok to be a disabled child, to develop atypically, and to become an adult with a disability
  • You can have a good life and be ok with your actual brain and body
  • Imagining that you will have a fundamentally different body one day makes everything harder
  • Life gets better when you accept yourself and work with your body and brain rather than against it
  • Shame is not a cure
  • Disability is not an emergency, and panicked intense early intervention will not make disability go away
  • Early education can be important, and kids with disabilities need appropriate support and care, and in many cases medical treatment
  • But their life needs to contain things other than treatment; people with disabilities need to do things besides be disabled and get therapy
  • Their life is already worth living and they don’t need to be cured to be ok
  • Don’t panic

Short version: Acceptance isn’t about denying that some aspects of disability can be awful, and it’s not about categorically rejecting medical treatment. It’s about working with yourself rather than against yourself, and pursing life now rather than waiting for a cure.

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.

Liking things is never age-inappropriate

People get to like things. It’s ok to like whatever you like.

Even if it’s a show for little kids

Or toys. Or kids’ art supplies. Or picture books. Or YA novels.

When people like things, they’re being people who like things, not being age-inappropriate.

It’s wrong to invade spaces that are intended for young children, or to attempt to get children to accept you as a peer. That’s a boundary violation. Age matters when you’re interacting with others, and some things are genuinely wrong for adults to do.

But liking the thing is never the problem. It’s always ok to like things. Adulthood happens when you reach the age of adulthood. It is not something you have to earn by turning away from awesome things you like.

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.