Struggling more with disability in times of political emergency

Everything gets harder under extreme stress. The situation of constant political crisis we’re living through is extremely stressful situation, and a lot of people are struggling.

This is not a normal situation. Donald Trump has been doing horrific things since the moment he assumed office, some of which we saw coming, and some of which have been awful surprises. Both the work that has to be done and the terror we’re facing on a day-to-day basis are draining. We have faced one crisis after another, and it has been completely exhausting.

The baseline level of stress and work we’re facing right now makes everything harder in and of itself — and new emergencies can intensify that. (And sometimes you might think that you’ve gotten used to it and then find that a particular crisis hits you particularly hard.)

If you have a disability, this may be affecting you differently than it’s affecting nondisabled people. Most people are having trouble right now; most disabled people are having additional disability-related trouble. That’s true in both the background sense and in the sense that the impact emergencies have on you may be different for disability-related reasons.

If you have a mobility disability, moving might be harder right now. If you have a speech disability, speaking might be harder or impossible right now. If you have sensory issues, some sensory input you are normally able to deal with might be intolerably painful at the moment. If you have an eating disorder, it might be harder to control it right now. If you have seizures or migraines or other neurological problems, your threshold might be lowered. If you have trauma-related triggers, they might be harder to tolerate, or you might be more hypervigilant than usual. If you are hard of hearing, it might be much harder to understand spoken conversations right now. And so on.

Things you’re used to being able to do might be harder or impossible right now. Coping mechanisms you’re used to relying on might not be working. This is true for everyone, disabled or not. But with disability, we’re also having functioning problems that most people around us aren’t having. That can in itself be difficult to cope with.

For many of us, self acceptance as disabled people is a struggle. Under extreme stress, acceptance can be even harder. Acceptance is a skill just like everything else — and under extreme stress, many of us are dramatically more impaired. Acceptance gets harder, at the same time that there is suddenly more to accept. But you’re still worthy of acceptance. You’re not broken. It’s just hard.

Being disabled isn’t a failure. Being more impaired in a time of extreme stress isn’t a character flaw. You’re not alone in struggling. Nondisabled people are also more impaired right now; and they also can’t make it go away through sheer force of will. The particular things you can and can’t do may be different — because you have a disability, and disability matters.

Short version: The times we’re living in involve a lot of fear and extremely stressful political crises. This kind of stress makes everything harder. If you have a disability, some of your coping skills might not be working very well right now. Acceptance may also feel a lot harder. It’s worth remembering that it’s normal to struggle in situations like this — and it’s not your fault that disability matters now. Your body is not a character flaw.

You can’t fight stigma by making disability unspeakable

I’ve noticed that a lot of well-meaning people try to fight disability stigma by making disability unspeakable.

The logic seems to be like this:

  • They notice that when people are seen as disabled, they are respected less. 
  • They call this stigma, and think of stigma as a very bad problem. 
  • They then try to figure out how to make stigma go away so that people will be respected more.
  • They think that if no one was seen as disabled, there would be no stigma.
  • They try to get people to pretend that disability doesn’t exist.
  • They expect this to somehow improve the lives of people with disabilities. (On the grounds that if everyone ignores disability, there will be no disability stigma.)

This approach doesn’t work. Disability exists, whether or not anyone is willing to acknowledge it. When we try to fight stigma by ignoring disability, we send the message that disability is unacceptable.

When people are made to pretend that their disability does not exist, they learn that basic things about their body are unspeakable. When people are made to pretend someone else’s disability doesn’t exist, they learn that if they stopped ignoring basic things about them, it would be impossible to keep respecting them. These are not good lessons.

If you need to pretend someone isn’t disabled in order to respect them, you’re not really respecting them. You’re giving imaginary respect to an imaginary nondisabled person. People with disabilities deserve better. People with disabilities don’t need fake respect handed out as a consolation prize. People with disabilities need to be treated with real respect, as the people they really are.

If we want to fight stigma, we have to get real. Disability exists, and pretending that it doesn’t just makes the problem worse. Stigma is not caused by noticing disability; stigma is caused by ableist attitudes towards disability. It is ok to be disabled, it is not ok to be ableist, and it is upon all of us to build a culture that understands that.

Acceptance makes responsibility possible

Sometimes disability and responsibility are seen as opposites. This is destructive, and it’s related to a taboo against acknowledging disability and ability at the same time.

Within this taboo, either we’re seen as basically just like everyone else, or we’re seen as basically unable to do anything that matters. This makes it very difficult to develop a sense of what it means to be responsible as a disabled person.

People who want us to see ourselves as capable often teach us to try and ignore our bodies, so that we can pretend that we’re really just like everyone else. This teaches us to pretend to have abilities we don’t have — and to make promises that we can’t keep. 

On the other hand, we’re often taught that being disabled means that our promises don’t count for anything. That it’s just a symbolic gesture, and that no one is ever counting on us in a real way. That everything we do is just practice, or symbolic, or someone else’s charitable attempt to include us. (Eg: a kid with a disability may be put on a baseball team nominally, expected to attend practices and games, never taught to actually play, and given the chance to hit a fake home run late in the season as a feel good event.) This can make it really, really hard to learn that it matters what we do.

There’s nothing inevitable about this. Disability doesn’t have to mean magical thinking and constant broken promises, and it doesn’t have to mean a never-ending stream of fake tasks. It can mean understanding the bodies we live in, and the minds we have. It can mean taking all of that into account when we decide what to do, and when we make promises. We can take real responsibility and do things that matter.

Sabotage disguised as acceptance

Acceptance is important. It’s one of the most crucial skills disabled people can develop. We have to learn to see ourselves as we are, and accurately

Acceptence is constantly, constantly undermined from a number of directions.

One of the most insidious things undermining acceptance is contact with people who speak in positive terms, but don’t believe in our abilities or agency even a little.

They will often call what they are doing acceptance, while at the same time doing everything in their power to convince us that disability means that we are fundamentally incapable of doing anything, that we shouldn’t try, and that we should just let them take over and run our lives.

This is fairly common in a certain kind of toxic parent community. (It’s also a common abuse dynamic in relationships between adults). Here’s part of the parent version:

Sometimes when parents say “My child is perfect the way she is,” what they really mean is “I don’t want my child to gain any skills that will enable her to separate from me, and I’m going to make sure she doesn’t.”

Some parents like this will give their disabled child anything but respect. For instance:

  • Some parents will give nonverbal children anything they point to
  • And will supply a lot of whatever their child expresses interest in
  • But no matter how old their child gets, they never stop treating them like a toddler. Even when they’re well into adulthood
  • And they don’t teach them about the world
  • Or talk to them about anything complex
  • Or try to find out what they think about anything more complicated than which objects they like
  • And won’t do anything to give them access to more complex communication
  • They will say that there’s no need for that, because their connection with their child is so deep that they understand everything they mean
  • That’s not true. Loving your child doesn’t make you a mindreader. Here’s a good post by a parent on the damage that approach does.
  • Even if parents infallibly knew what their child was thinking; kids need to be able to communicate with people other than their own parent
  • (Particularly since most children outlive their parents, and kids who can only communicate with their parents eventually end up unable to communicate with anyone)

Some parents will do anything for their disabled child — so long as it doesn’t run the risk of their child becoming more autonomous and less dependent on them. Eg:

  • Some parents prefer to carry disabled kids who are capable of learning how to walk
  • Some parents will put a lot of effort into making sure they’re always available to push their kid in an adaptive stroller, but adamantly refuse to get them a wheelchair they can propel themselves
  • Some parents will spend massive amounts of time putting their kids into complex outfits daily — and refuse to buy them any clothing that they can put on and take off independently

Some parents will allow their disabled child to do anything — except show consideration for others or develop reciprocal relationships not orchestrated by parent’s script. Eg:

  • They’ll allow their kid to boss people around at home, but they won’t let them go to any other kid’s house, ever, claiming that it’s somehow unsafe (even if their kid doesn’t have complex medical needs)
  • (Parents who do this often also do things like recruit children to come over and act like friends according to the parent’s script. For instance, by playing a game with their child and letting them win.)
  • Sometimes children who get overloaded hit people, are embarrassed, and want to apologize for hitting. Parents in this mindset tell them that it’s ok, that they couldn’t help it, and that they shouldn’t worry about it and definitely shouldn’t apologize.

Doing this kind of thing is not disability acceptance, even if the one doing it describes everything in flowery language. Sabotaging a child’s independence is not acceptance. Forcing a child into dependency is not acceptance. Destroying a child’s ability to engage in reciprocal relationships is not acceptance. Treating an adult as a child is not acceptance. Treating a disabled adult as a puppy or a plant is not love. That kind of stuff is just ableism.

People who say things like that aren’t accepting us as people. They’re saying that we’re not full people, and that they get spiritual satisfaction from having unpeople around.

We’re people. All the way down. Real acceptance is about seeing us as full human beings, acknowledging the impact disability has on us, and committing to finding ways to accommodate disability.

Short version: Treating disabled children and adults like puppies or toys is never ok, even if you call it acceptance and positivity.

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.

Shame is not a cure

So, here’s the thing.

People with disabilities are taught that we’re just lazy. That eventually, if we care enough, we’ll be cured. That we can shame our way out of being disabled. 

This is counterproductive.

If you can accept the way you are, the way your mind works, the way your body works – 

You can figure out how to do things in the way that *actually works for you*.

And you can do a lot more, than if you’re stuck in the mindset of thinking that shame will cure you.

Shame doesn’t create abilities. Self-hatred doesn’t create abilities.

Acceptance creates abilities. Understanding and working with your real configuration rather than against it can greatly expand what you can actually do. Even though there are abilities you will never have. There’s a lot you can do, if you understand and accept yourself as you are.