We’re just like everyone else — and we’re also different

In some ways, people with disabilities are just like everyone else. In some ways, we are very different. Both sides of that matter. Bad things happen when either is overlooked.

We are different from everyone else in that our bodies work differently. Most people have bodies that can do certain things. Our bodies can’t do all of the things that most other people can do. That matters. Being blind means something. Being d/Deaf means something. Having an intellectual disability means something. Being autistic means something. Having a mobility disability means something. Fatigue means something. Depression means something. The way we move, communicate, think, and perceive the world matters. Thinking about the differences created by our disabilities allows us to think about how to live with them — and live well with them. These differences do not need to be cause for alarm — we’re just people, and we’re part of the world, just like everyone else.

We are just like everyone else in that we are human beings. Our bodies are important. We experience pleasure. We have feelings. When people hurt us, we feel it, and it matters. Injustices against us are important, and we have the right to resist. We learn for our whole lives. If we survive to the age of adulthood, we become adults. When we wrong people, it matters. We are able to love. We can reciprocate relationships, consideration, and efforts. And any number of other things. Basically, we are people.

We are different from nondisabled people in that we can’t assume that we will be treated as equals in any context. Few, if any, spaces are designed with the assumption that we will be present, or that our presence is important. A school with a wonderful reputation for supportive friendliness may be aggressively, or subtly, hostile to students with disabilities. A movie theater may not bother to unlock the accessible doors, or may not have accessible doors at all. Airline policies may make travel impossible. People who say they are our friends may see us as charity projects, possibly with the encouragement of teachers or therapists. Or any number of other things. The daily toll of unmet access needs adds up, especially when the barriers are unnecessary, especially when they could be easily removed if anyone cared to do so.

We often can’t even assume that our humanity will be recognized.  In our culture, we are surrounded by people who think that disability makes us less than human — sometimes even within disability community. Sometimes it’s subtle, and sometimes it’s blatant. Many of us grew up subjected to therapy that would have raised outcry if it had been done to a typically developing child. Any number of books and movies raise the question of whether death is better than disability.

Conversations about disabled people often do not include us, and often do not even recognize that we have perspectives of our own. When disabled people are murdered by caregivers, the murderers often get more sympathy than the victims. Ethicists with tenure debate whether disabled people ought to be allowed to be born, whether medical treatment for people with disabilities is a good use of resources, and whether we’re really people after all. And so on. The dehumanization adds up, too.  Even when we are treated well, we live with the knowledge that people just like us are not.

We are fully human, and it is wrong to treat us as subhuman. In that sense, and many others, we are just like everyone else. We are also different. We are physically and cognitively different from other people, and those differences are important. We are also treated very differently from others, and that experience is important too. All of these things shape who we are, and the skills we need to live well. Glossing over disability does not serve us. We can get a lot further if we are matter of fact about all of this, and face these realities honestly.

Short version: People with disabilities are just like everyone else in some ways. We are different from everyone else in some ways. We are the same in that we are people. We are different in that our bodies work differently — and in that others treat us as subhuman. All of these things matter.

On coming in third in the oppression olympics

Some groups and individuals are marginalized in ways that others are not. Some groups are overall more marginalized than others. Some individual people are overall more marginalized than others. Often, it depends heavily on context (including where you live, what you’re doing, and what the people you interact with regularly care about. Among other things).

For instance: Some people are perceived as mentally incompetent, and may be at risk of being put under guardianship and deprived of adult rights. Some people are perceived as threatening, and may be at risk of being imprisoned or killed by the police. Some people face neither risk. Some people face both. The degree to which someone is in danger depends on a number of things, including which marginalized groups they are part of.

And once it’s actually happened to someone, they’re someone it happened to — regardless of how likely it seemed that it would happen to someone like them. And these are just two examples — there is a lot of injustice in the world, and there are any number of other examples.

It’s important to be able to talk about this. If we only approach justice from one angle, we will probably overlook things that we haven’t experienced personally. If we assume that everyone is facing the same thing, we can very easily end up disregarding the needs of those who are in the most danger. No one is immune to this; when injustice doesn’t affect you or someone you care about personally, and doesn’t make the news in a way you can understand, it’s natural to remain unaware that it’s happening. It can help to cultivate in yourself awareness that others experience things you don’t and that you won’t always know what those things are. And that some people know things that you don’t know.

It’s very difficult to talk about these differences productively. It can often end up devolving into a contest over who is the most oppressed, or whose oppression is the most real, or who is suffering enough to matter. This is counterproductive, because even one form of injustice is too much. Whether someone comes in first, second, or third in the oppression olympics — or barely seems to even qualify — no one should face injustice. We don’t need to fight over who is the most dehumanized or the most deserving of justice. It’s much better to focus on what the problems are, what’s causing them, and what can be done.

It’s also hard to talk about the problems with oppression olympics. Sometimes people say “don’t play oppression olympics,” and mean “I don’t want to hear about any forms of injustice that I’m not already fighting.” That sort of dismissiveness does a lot of harm. People who are being harmed are often treated like they don’t matter;  people with legitimate criticisms are often ignored. It can be excruciating to face up to what you’ve missed in your work to make things better. It’s also vital.

Some people and groups really are oppressed in ways that others are not. Some people and groups really are subjects to worse things than others. When we refuse to face up to this reality, people get hurt badly. These differences matter, and the truth about them needs to be speakable. Not all injustice is equal, but it is all important. Even one form of injustice is too many. When people work towards justice, their work is important even though it does not address everything. There are a lot of problems that need to be addressed, and lot of people work that needs to be done. Mistakes matter; so do accomplishments. We can all take things seriously, learn from people who know things we don’t, and keep building.

When professionals assume that parents of disabled kids see ghosts

In the special needs service provision community, there is a strongly held narrative about what happens when a kid turns out to be disabled. This narrative causes a lot of problems.

According to this narrative:

  • Professionals believe that parents have a strong emotional attachment to the typically developing kid they were expecting.
  • They are usually in denial even about obvious signs of disability, and will hold on to their fantasy for as long as possible.
  • At some point, the parents are forced to confront their child’s disability.
  • They lose their fantasy of the child they expected, and this is emotionally devastating.
  • In order to move on, they have to mourn the loss of the child they expected and the life they expected.
  • Parents need emotional validation and help working through that.
  • All of this is very widely believed, and I think this model causes a lot of problems.

I think the grief model is a problem on several levels:

When parents are grieving for the child they expected, it’s really hard on the child they already have:

  • Children want adults in their lives to see them, approve of them, and love them.
  • When parents are seeing ghosts, they’re not seeing their real child.
  • Children can tell when adults in their lives are looking past them. It hurts.
  • When parents are mourning for the child they expected, they are disappointed by the child they actually have.
  • Children can tell when adults in their lives are profoundly disappointed in them. It hurts.
  • And it especially hurts when the child has no control over the things that are disappointing their parents.
  • While parents struggle to accept their children as they are, their children struggle to cope with being parented by people who do not yet find them acceptable.
  • That hurts. And it leaves scars.

Kids need support in navigating this, and they don’t often get it:

  • There is often a tendency to pretend that kids don’t know.
  • But disabled kids aren’t a separate species. They’re kids, and kids are almost always very sensitive to how adults in their lives feel about them.
  • Kids need people in their lives who see them, and not ghosts.
  • Kids need people in their lives who can accept and value them as they are.
  • Sometimes that can’t be their parents. Or can’t (yet) be their parents.
  • But it needs to be someone. (And their parents need to understand that their attitude towards their child affects their child)
  • If you work with kids in any capacity, it is likely that this person needs to be you sometimes.
  • Looking at the real child and seeing a person matters. Seeing them and not a ghost of someone you expected matters. Making it clear that you’re not disappointed in them matters.
  • If you can do that for kids you work with, it can prevent a lot of pain. (And can likely help their parents to come to a point of acceptance sooner.)

Further, not all parents actually feel this way:

  • The professional narrative about grief and mourning does not accurately describe all parents.
  • Parents of disabled kids have all kinds of feelings about their kids for all kinds of reasons.
  • Not all of these feelings are negative.
  • Even when parents have negative feelings, they’re not always grief.
  • Sometimes parents feel overwhelmed and confused about how to support their child.
  • (Or worried about how to afford the things their child needs).
  • (Or repulsed by things professionals are telling them to do to their children as therapy.)
  • Sometimes parents feel ashamed about not having noticed sooner.
  • Sometimes parents feel concerned that they may have caused their child’s disability.
  • Or any number of things.
  • Not all parent feelings are grief, and the full reality needs to be acknowledged

Parents are sometimes pressured into mourning when they weren’t already grieving:

  • The grief and mourning narrative is strong and pervasive.
  • Parents are often expected to describe everything they’re feeling as grief.
  • Parents are often not given any support in working through the other feelings and doubts they are having.
  • This can result in parents being pushed into a mourning process that wasn’t actually necessary for them.
  • It is very damaging to both parents and children when this happens.
  • It is not good to grieve for the living. When it’s avoidable, it should be avoided.
  • It’s important to be careful to avoid pushing parents into adopting a grief narrative unnecessarily.
  • (Sometimes it’s not avoidable, for reasons that aren’t anyone’s fault. But it’s often more avoidable than people realize.)

Short version: There is a pervasive professional narrative that says parents of disabled kids need to mourn for the child they were expecting before they can accept their real child. This isn’t always true, and parents are sometimes pressured into feeling and mourning through grief that they otherwise would not have experienced. When parents *do* mourn for their living children, that is emotionally devastating for the kids. Parents and kids both need much better support in navigating the disability acceptance process.

For another perspective on this, see Jim Sinclair’s classic article “Don’t Mourn For Us” (written about autism specifically.

You don’t have to be better than you are to make things

You don’t have to be better than you are to make things.

The things you make do not have to be perfect, and neither do you.

It’s ok to make flawed things. It’s ok to make mistakes.

Everything you make will be flawed. Everything everyone makes is flawed.

No matter how good someone is, what they create will be imperfect. If you wait until you’re capable of making a perfect thing, you’ll never make anything.

You do not need to be the best in order for it to be ok to make things. You don’t even have to be impressive.

It’s ok to make things even though other people make better things.  It’s ok to make things, even if other people know more than you do.

It’s also ok to make things even if you’re not sure the things you’re making are any good at all.

It’s ok not to know everything. It’s ok to make mistakes. It’s ok to make things that aren’t good enough.

Everyone who makes things, has made things that weren’t good enough, and will continue to do so. Everyone who is skilled started out unskilled. Nobody starts out as the best.

It’s ok to make things, even if you are the worst, even if you are the least skilled, and even if you make a lot of mistakes that others wouldn’t.

You don’t have to be the best in order to make things. You just have to make things.

You don’t have to be perfect. You don’t have to be better than you are. You can make things as you are, with the skills and knowledge you already have.

You don’t have to be a professional or an expert in order to make things. You don’t have to have years of experience making things in order to make things.

You don’t have to wait to be better, or to know more, or to hold off on making things until you’re capable of making better things. You can make the things you’re already capable of making.

No matter who you are or what your skill level is, you’re good enough to make things.

You can make the things you’re already capable of making, and you can keep learning.