Tag: solidarity

Autism stereotypes and Not Autism Syndrome

Real Social Skills

People who have rare developmental disabilities are often misdiagnosed with autism.  This happens in part because a lot of disabilities look similar in early childhood. When kids with undetected rare genetic conditions start ‘missing milestones’, they are often assumed to be autistic.

When people are assumed to be autistic, autism stereotypes get applied to them. They’re often assumed to be uninterested in people and communication, and they’re often put into ABA programs prescribed for autistic people. They face the same kind of degrading and damaging misunderstanding that autistic people do.

When advocacy organizations address the issue of misdiagnosis, they tend to say some form of “It’s important to distinguish between autism and Not Autism Syndrome, because demeaning autism stereotypes only accurately describe autistic people.”

Here’s a Rett Syndrome example:

“The child with RTT almost always prefers people to objects, but the opposite is seen in autism. Unlike those with autism, the RTT child often enjoys affection.”

And a Williams Syndrome example:

“Unlike other disorders that can make it difficult to interact meaningfully with your child, children with Williams Syndrome are sociable, friendly and endearing. Most children with this condition have very outgoing and engaging personalities and tend to take an extreme interest in other people.”

Statements like these suggest that the problem with autism stereotypes is that they’re applied to the wrong people. The thing is, demeaning autism stereotypes aren’t true of anyone. We all have feelings and thoughts and the capacity to care about things and relate to other people. Accurate diagnosis matters, but not as a way of sorting out who is and isn’t fully human. We’re all fully human, and no one should be treated the way autistic people are treated. We shouldn’t pass around stereotypes, we should reject them.

We need to be as good at lifting up as we are at calling out

Real Social Skills

In advocacy/activist space, we’ve gotten really good at noticing and naming oppression. We’ve gotten really good at criticizing the things that people are doing wrong, and demanding change. We’re also good at noticing organizations and people who shouldn’t be supported, and explaining why people shouldn’t support them.

This is important — and it’s not enough. We need to be equally good at noticing and naming things that *are* worth supporting. We need to be equally good at noticing what people are doing well, describing why their approach is good, and finding ways to support it. Calling out isn’t enough. We need to seek out things to lift up.

When we focus exclusively on finding things to call out, we send the implicit message that nothing good anyone is doing is worthy of our attention. But none of the work of building a better world happens by itself. It depends on the people who are putting the effort into doing the work. When we ignore the value of the work people are doing, we both harm those people and the work itself.

The work is hard, exhausting, and vital. It’s also often thankless — because we’re not acknowledging it in the way we need to be. Often, doing activism and advocacy means signing up for a life of being paid less than a living wage (or volunteering your very limited time), having your work ignored, and being noticed by your community only when people are angry at you.

This is particularly common when the work is done by marginalized people. Our culture socializes us to ignore the work that women and other marginalized groups do, except when we find reason to criticize it. This dynamic carries over into activism/advocacy spaces. It’s just as toxic when we do it as when corporations do it.

There’s nothing inevitable about this. We can make it stop. We can pay attention to the work people are doing, and we can show respect to the people doing it. We can describe the worthwhile things people are doing, and talk about why they should be valued. We can seek out ways to support what people are doing, whether that means donating, signal boosting, going out and voting, connecting people to each other, or any number of other things. By getting just as good at support as we are at call outs, we can make the world much better.

“It’s not just about wheelchair access”

Real Social Skills

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.

Solidarity can be better than comfort

Real Social Skills

ischemgeek asked:

Advice on expressing sympathy and lending emotional support to a family member whose child may be facing a serious illness? Both for the “dunno for sure” phase and for the “know for sure either way” phase. Comforting is not my strong suit and halp plz because this can’t be fixed so soothing is only way to be helpful.

realsocialskills said:

So, I’m going to answer this in two parts. This post is about emotional support.

I think that most people who are facing emotionally devastating situations need solidarity more than they need comfort.

One way to show solidarity is to acknowledge what’s going on, and to let them feel however they feel about it. People in awful situations often face relentless pressure to try to have a ~positive attitude~ and not be upset. This is particularly true of child illness, particularly if the illness is life-threatening, particularly if it is cancer.

This positivity narrative pressures people to think that they can somehow fix things with the power of positive thinking, and that they will somehow ruin things if they get upset or have feelings that aren’t 100% hopeful at all times. That can make things a lot harder.

People often end up feeling a lot of pressure to put on a positive and hopeful face around people who care about them. They also often face pressure to be constantly trying not to be upset. They can end up spending a lot of emotional energy taking care of the needs of people who want to comfort them.

And in reality — people facing difficult situation are going to struggle and have complicated feelings. And, in this case: People who have reason to suspect that their child is seriously ill have every right to be upset and afraid. And the last thing they need is relentless pressure to think positive and feel hopeful.

Probably the best form of emotional support you can offer is to listen without trying to make them feel better. You can acknowledge what is going on, and be someone who they don’t have to gloss over things with. You can be there with them while they feel however they feel about it. You can be someone who listens to them respectfully.

Many people facing awful situations don’t have that, and having it can make a big difference.

I wrote a while back about the importance of acknowledging that sometimes things are terrible, and also about some practical methods of listening to someone who is facing a bad situation.

Short version: If someone is facing a bad situation, trying to comfort them often backfires. It often works better to focusing on listening to them and expressing solidarity.

Autism is a disability

Real Social Skills

A reader asked:

You know, I follow this blog because I think it’s cool and although I don’t really read your advice posts, I can see they’re very respectful and well thought out. That aside, I want to ask: how do you feel about labeling autism as a disability?

realsocialskills said:

I feel very strongly that it is important to refer to autism as a disability. It’s not just a difference; it’s a particular kind of difference, and that kind of difference is called disability.

There are all kinds of things that most people take for granted that autistic people can’t do, or struggle with, or can only do intermittently. Autistic people face ableist discrimination in response to not being able to do those things, or being perceived as not being able to do those things.

We have all of that in common with people with any other kind of disability. Acknowledging that allows us to learn from and collaborate with one another. Denying that we’re disabled just isolates us.

I think that every single thing I’ve written about autism has been reblogged by someone with another kind of disability saying “I can relate to this too”. As a result, my writing has become increasingly cross-disability. We have a lot in common.

If we try to separate ourselves from other disabled people, we lose a lot. Overlapping disability communities have a lot in common, and a lot of built up tools for dealing with disability, dealing with discrimination, and supporting one another. If we admit that we’re disabled, we can be part of that. If we don’t, everything gets a lot harder.

Short version: I think that autism is a disability and that admitting that makes life a lot better for autistic people.

Everyone gets blamed for their condition

Real Social Skills

People with depression and other mental illnesses get told that they can get over it with diet, exercize, and positive thinking. They also get blamed for having it, and told that it’s their own fault. This is wrong.

It’s also a common experience of everyone with every condition there is. This is not unique to mental illness.

Everyone with a disability, illness, or other condition gets blamed for it. People with every condition get told that it’s their fault, that they caused it by eating wrong, sleeping wrong, thinking wrong, or not being sufficiently careful.

People with every condition get told that medical treatment is toxic and wrong, and that if they just stop believing big pharma, they’ll recover. Even people with cancer.

People with every condition get told that they’re causing their own problems by being too negative, and that they’d get better if they’d just think positively. Even people with spinal cord injuries.

People with every condition get told that they will be healed if they just have faith and pray hard enough. Even people whose condition is obviously genetic.

People with every condition get told that they’re imagining things. Even people with unmistakable visible physical conditions.

People with every condition face this kind of prejudice. It’s not unique to any group. We should stand together and acknowledge that we all face it, and that it’s wrong to do to anyone.

Short version: People with every condition get blamed for it and told that things like positive thinking and rejecting big pharma will make everything better. It isn’t unique to mental illness. It’s wrong to do to anyone.