Tag: disability

The drawbacks of anger, and some alternatives

Real Social Skills

A lot of things that are normal aren’t ok. It’s hard to notice this. We’re socialized to accept a lot of things that really ought to be unacceptable. When we try to object, we’re punished. Being punished for objecting is often humiliating and disorienting.

It’s hard to remember that these things are wrong even when others punish you for saying so. It’s hard to remember that you have rights when others act like you don’t.

One way to remember that things are wrong is to get angry about them. Feeling outraged can make it easier to hold onto your sense that, no, this isn’t ok, and yes, it is ok to object.

Unfortunately, the price of rage is high. Rage hurts. It’s physically unpleasant, physically exhausting, emotionally draining, and makes it hard to think clearly. The physical and emotional exhaustion from anger makes it harder to do other things. The fog of anger can lead to mistakes that make it harder to remember after the fact that you were justified in objecting. Rage is better than nothing, but there are other strategies that don’t hurt as much.

One thing that can help is to develop your understanding of the situation over time. If you learn to understand what you’re angry about and why, it can make it possible to use understanding rather than anger to stay oriented.

Questions like these can help:

  • What am I angry about?
  • Why am I angry about that?
  • What happened that I think is wrong?
  • Why do I think it’s wrong?

For instance, say I’m in class, we’re doing an activity, I’m not able to do the activity, and I’m feeling angry. We’re writing thoughts on big paper, and I can’t do handwriting well enough to participate. In that situation, I might think:

  • Why am I angry?
  • I’m trying to participate and failing over and over and that’s intensely frustrating.
  • Why am I angry about that?
  • Because I’m sick of being left out all the time.
  • What happened that I think is wrong? 
  • The teacher knew about my disability and didn’t do anything to accommodate it when they planned the activity. 
  • When I pointed out that I couldn’t participate, they didn’t do anything to fix it.
  • Why do I think that’s wrong? 
  • Because I have a right to be here, and the teacher is supposed to be teaching me. 
  • I’m a student here, and I have the right to learn the material and be part of the activities we’re using to learn it.
  • This is disability discrimination, and that’s wrong.

Then, the next step in using understanding rather than anger is to notice that something is wrong before you start feeling enraged. Sometimes that can make it possible to fix the problem without having to get to the point of outrage. It can also make it more possible to decide when to fight and when not to.

For instance, take the class activity. If I remember that I have the right to be there and that it’s the teacher’s responsibility to teach me, this might happen:

  • I go to class and see that there is big paper on the walls.
  • I remember that I can’t do big paper activities.
  • I remember that I have the right to participate in educational activities.
  • I remember that I have the right to learn the material.
  • I ask right away “Are we doing a big paper activity today? How will I participate?” 
  • At this point, I’m annoyed, but not outraged, and able to assert something without it hurting so much.

They may or may not respond the right way — and I might still get really angry. But if that happens, I can repeat the strategy again, figure out what I’m angry about and why. Then I can get further without depending on anger the next time. (Even when you can’t win or fix the problem, it’s still often possible to use that kind of strategy to stay oriented without rage. I have more posts in the works about that specifically.)

Anger isn’t a failure. It’s ok to be angry when unacceptable things are happening. It’s also ok *not* to feel physically angry. Anger hurts, and you don’t owe anyone that kind of pain. You don’t have to be pushed to the point of rage in order to be justified in objecting to unacceptable things.

Sometimes it might help to explicitly remind yourself of this. Some affirmations that have sometimes worked for me:

  • I don’t have to hurt myself to prove that this is wrong.
  • It’s still wrong if I’m calm. 
  • It’s still wrong if I’m not crying and shaking. 
  • It’s still wrong if my heart isn’t pounding.
  • Even if I’m ok, the situation isn’t ok.
  • Even if I’m ok in this moment, it’s ok to object to a situation that’s hurting me and/or others.

It also helps not to beat yourself up for getting angry. Anger in the face of outrageous things isn’t a failure. No strategy can completely replace physical outrage for anyone. Holding yourself up to impossible standards won’t help. Working on your skills at staying oriented in other ways will.

These strategies are harder to learn and harder to use. They also make it a lot more possible to resist and stay oriented without hurting yourself. It’s not all or nothing — any skills in this area help, and it gets easier with practice.

“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.

For disabled presenters: Handling ableist laughter from your audience

Real Social Skills

Disabled presenters tend to face really intense ableism. One way this plays out is that audiences laugh at us when we talk about serious things.

This happens particularly frequently when:

  • Nondisabled professionals or our parents are also on the panel, or presenting right before or after us.
  • The audience is primarily parents of disabled children/adults.
  • The audience is primarily professionals who work with people with intellectual disabilities.
  • We talk about a desire to be taken seriously.
  • We discuss our objections to being treated like children.
  • We describe being proud of a personal accomplishment.
  • We describe being treated inappropriately by a professional.
  • We describe how we felt as disabled children.

When audiences do this, it’s not nice laughter. It’s a way of asserting power. That laughter means “I don’t have to take you seriously”.

As a disabled presenter, it’s often possible to insist on respect. It’s easier said than done. It gets easier with practice, but the practice often hurts. Here are some things I’ve found helpful:

It can help to remind yourself that you know what you’re talking about, and the things you’re saying are important:

  • You’re presenting because you know what you’re talking about.
  • People should take your expertise seriously. When you talk about the things you know, they shouldn’t laugh at you.
  • Your accomplishments are not a joke. People should not laugh or be condescending about them.
  • People who treat you like a baby are doing something wrong. Your desire to be treated in an age-appropriate way is not a joke. People shouldn’t laugh at you for talking about it.

When an audience laughs at you, it can help to make it uncomfortable for them:

  • Don’t smile, and don’t laugh yourself.
  • Wait for the audience to stop laughing.
  • Wait a second before going on to make it feel awkward.
  • One option: Ask the audience “Why is that funny?” then continue.
  • Another option: Repeat what you said before people started laughing.

Try to avoid nervous laughter and nervous smiles:

  • It’s taboo for disabled people to talk about disability.
  • Talking about taboo topics can be embarrassing.
  • When we’re talking about embarrassing things, it can be natural to smile or laugh nervously.
  • If you seem embarrassed, the audience is more likely to feel like the topic is embarrassing and laugh to get rid of the embarrassment.
  • If you laugh, the audience is more likely to feel like it’s ok for them to laugh.

Making jokes on purpose:

  • Making jokes can be a way to control what people are laughing about.
  • This can be easier than getting them to not laugh in the first place.
  • In these contexts, it can be better to avoid self-deprecating humor.
  • It’s usually better to make jokes about ableism.
  • (This isn’t a hard-and-fast rule though, do what works for you.)

For instance, say you’re giving a talk about educational discrimination:

  • This is self-deprecating:
  • “I was this ridiculous little kid in third grade. I was so enthusiastic, but I couldn’t even read. I’d hold up the books and pretend. My imaginary friend may have stolen the cookies, but she sure didn’t read for me.”
  • This is making fun of ableism:
  • “My teachers kept assigning me worksheets that I couldn’t do. They kept making me read in front of the class, even though I could never do it. They kept telling me to just do it. And they say we’re the ones who lack empathy and theory of mind.”

Don’t beat yourself up when things go wrong:

  • Presenters/panelists with disabilities face intense ableism.
  • It’s going to hurt sometimes.
  • The problem isn’t that your skin is too thin; the problem is that people are hurting you.
  • A thick skin is still worth developing.
  • If an audience laughs at you, it’s their fault, not yours. They shouldn’t act like that.
  • It’s messed up that we have to develop skills at deflecting ableism and insisting on respect.
  • It’s also worth knowing that these skills exist and can be learned.
  • It gets much easier with practice, but no one succeeds all the time.
  • When a talk goes bad, don’t beat yourself up, and don’t blame yourself for the audience’s ableism.
  • You’re ok, they’re ableist, and the things you have to say are still valuable when they’re not valued.

These are some of the methods I’ve used to deal with audience ableism. There are others. What are yours?

Short version: When disabled presenters give serious presentations, people often laugh at us in ableist ways. Scroll up for some strategies on how to handle that attitude from an audience.

Disability doesn’t come with extra time and energy

Real Social Skills

I’ve heard a lot of advocates of inclusion say things like “kids with disabilities work twice as hard as everyone else” or “my employees with Down’s syndrome never come in late or take a day off.”

This sounds like praise, but it isn’t.

The time disabled people spend working twice as hard as everyone else has to come from somewhere.

There are reasons why kids aren’t in school every waking moment. There is a reason why vacation time exists and why it’s normal to be late occasionally.

People need rest. People need leisure time. People have lives and needs and can’t do everything.

Being disabled doesn’t erase the need for down time. Being disabled doesn’t erase the need for play, or for connections to other people.

Working twice as hard as everyone else all the time isn’t sustainable. Praising disabled people for doing unsustainable things is profoundly destructive.

People with disabilities should not have to give up on rest, recreation, and relationships in order to be valued. We have limited time and energy just like everyone else, and our limitations need to be respected.

It is not right to expect us to run ourselves into the ground pretending to be normal. We have the right to exist in the world as we really are.

“Have fun” should not be a rule

Real Social Skills

A lot of summer camps, youth groups, and other activities have a “have fun” rule.

The implied message is usually: This is a fun place. If you’re not having fun, you’re doing something wrong. Fix your attitude and have fun doing the fun activities.

Sometimes “have fun” rules are explicit. Sometimes they’re more implicit, and come in forms like: making people sing a song every day about how much they love camp, announcements about “we’re all having so much fun!”, or whatever else.

The problem with this is: nothing is fun for everyone. People have the right to feel how they feel about things. It’s really degrading to tell an unhappy person that they should just feel some other way.

“Have fun” rules are especially problematic for many disabled people.

Because — most programs are not fully accessible, even when they think they are. Most of us expect to encounter activities that are inaccessible in ways that make participation impossible — or that make them no fun.

And often, initially fun activities are ruined when someone treats you in a degrading way or says something awful about disability.

Being left out when everyone else is having fun is bad enough. When there’s a “have fun” rule, it’s even worse. Not only are you hurt by the exclusion, you’re told that you’re violating the rules by being hurt and unhappy.

“Have fun” rules make it really hard to solve these problems, because they make it risky to admit that you’re not having a good time.

“Have fun” rules make problems harder to solve, even when the problem has a straightforward solution. All the more so when the problem is complicated. (Or only has a partial solution.)

“Have fun” rules actually make things a lot less fun.

Recognizing uniqueness is not a substitute for thinking about disability

Real Social Skills

Teachers who are really good at teaching typically developing kids sometimes have trouble understanding the significance of disability. I’ve heard a lot of things like “all kids are unique” and “I always individualize my approach for every kid” and “I don’t see the need to label any kids as disabled, it’s just a matter of finding what works for them”.

This sounds positive, but it can be a disaster for kids with disabilities.

We talk a lot about uniqueness, but a lot of effective teaching depends on understanding ways in which kids are similar to each other. Developmentally appropriate practice means understanding how kids the same age are similar to each other — then being flexible in ways that recognize kids’ unique humanity. We develop a sense of what the range of difference is for kids of a particular age.

Kids with disabilities are more different than that, and we need to take those differences seriously. Disability matters, and practices based on typical developmental milestones don’t account for it.

For instance:

Developmental milestones tell us:

  • Two year olds don’t have the motor skills to support handwriting.
  • Early education helps two year olds develop the motor skills that will eventually support handwriting.
  • Ten year olds do have the motor skills to support handwriting.
  • If they’ve had appropriate education, ten year olds should be able to write.

Developmental milestones don’t tell us:

  • How to teach ten year olds who don’t have the fine motor skills to support handwriting.
  • What early literacy and pre-writing instruction looks like for young children who are unlikely to develop the motor skills needed to support handwriting

It’s also important to understand the difference between unusual and unique. Disability means having unusual differences. But not every difference is unique. Some differences are shared by other people with disabilities. Those shared differences are important.

We need to understand the disability-related similarities. Part of that is having the right words to describe them. Calling disabilities by their right names isn’t about labeling, it’s about breaking isolation and making important things speakable.

For instance:

Braille:

  • Braille exists because blind people need it to exist
  • The differences between sighted people and blind people are a reason that braille needs to exist.
  • (And a reason that Braille is better than raised print).
  • The similarities between many blind people are a reason that braille *can* exist as a standard way of accessing literacy.
  • If each blind person was completely unique, there would be no way to create a reading and writing system that would work for large numbers of blind people.

Some other examples:

  • Wheelchairs.
  • Ramps.
  • Large print.
  • Cars with hand controls and/or wheelchair lifts.
  • Text-to-speech communication devices.
  • VoiceOver and other screen reading software.
  • Signed languages.
  • Medications that manage symptoms.
  • Supportive seating.
  • The ADA, Section 504, IDEA and other disability rights laws.

People with disabilities are unique, and not interchangeable with each other. Similarly, kids the same age are unique, and not interchangeable with each other. Both the similarities and differences are important.

Short version: Sometimes progressive educators are uncomfortable with the concept of disability, and want to instead just see every kid’s uniqueness. That doesn’t work, because disability means having unusual differences — and because the differences aren’t unique; they’re shared with many other disabled people. Recognizing uniqueness isn’t enough — we also need to understand and accommodate disability.

Taking pills when it’s difficult to do so

Real Social Skills

arrowhearts said to realsocialskills:
I was wondering if you knew of any tips or resources for taking (pill-based) medications daily when for a variety of reasons (anxiety, forgetfulness, bad taste, fear, etc) it is difficult to do so? Also thank you so much for the time and thought you have put into this blog! It has been very useful and informative to me!

realsocialskills said:

There are some potentially useful reminder/tracking apps for iOS, Android, and Apple Watch:

  • Mango Health, which is gamification-based and offers rewards/badges for taking your pills every day. (It’s not very flexible.) It also has notifications and reminders.
  • (If you like gamification, HabitRPG may also be helpful).
  • Medisafe, which is in no way gamified and isn’t trying to make you have fun or like anything. It’s just an app that tracks medications, gives reminders, and has a few other features.

Getting help remembering from someone else:

  • Some people find it helpful to have someone remind them to take pills.
  • Or ask them whether they’ve taken a pill.
  • Or to bring them the pills.
  • (Both medication apps allow you to link another person to your pill-taking records, if you want to.)
  • This can also backfire, and isn’t the right option for everyone.
  • (One way it can backfire is that if you ask people for help remembering, they may think that it’s their job to *make* you take it, whether you want to or not.)
  • (Needing help with the logistics of pill-taking doesn’t mean that you need someone else to take over your medical decisions, but a lot of people think it does).
  • Some people also find that their anxiety skyrockets when others pay attention to their pill-taking.
  • Sometimes this is less of a problem if it’s mutual (where you remind someone about their pills, and they remind you about yours.)

Help can also be more occasional:

  • Some people need occasional help figuring out the logistics, or overcoming anxiety or other barriers. It can help to have people you can ask for occasional help, along the lines of:
  • “I need to take my pill, but I need to eat before I can take it, and I have no food. Can you help me figure out how to eat?”
  • “I can’t make myself take my pill, can you tell me to go do it?”
  • “Can you remind me that it’s ok to take pills and that I’m not being lazy or something?”
  • “I’m having trouble with the pharmacy’s online refill system, do you know how it works?”
  • tl;dr: Needing help doesn’t mean needing others to take over, and it doesn’t necessarily mean needing supervision or ongoing daily assistance.

If the problem is that the pills taste disgusting or are hard to swallow:

  • Sometimes this is a problem that goes away over time.
  • Sometimes if you keep tasting a particular taste regularly, it become less disgusting.
  • Similarly, many people who initially find swallowing pills difficult find it much easier as they get more practice.
  • You can also put the pill in a spoon of something like applesauce, yogurt, or pudding. That can mean that you taste and feel the pudding and not the pill, which can make swallowing easier for some people.
  • Some people find it helpful to chase pills with a liquid they like.
  • (A caveat about that:
  • If  the taste/sensation makes you feel sick to your stomach or like you’re going to throw up, it may not be a good idea to drink/eat something you really like right after.
  • Because you can end up associating that feeling with the thing you like, and then develop an aversion to that too.
  • But if the nasty-tasty pills *don’t* make you feel sick, washing the taste away with something you do like can work really well.)

If the problem is irrational or mostly-irrational anxiety:

  • Reminding yourself that the anxiety is irrational can help.
  • Reminding yourself what the pill does and why you want to take it can also help.
  • And once you get used to taking the pills regularly, the anxiety may go away.
  • Some people find it helpful to think things like “This is scary, but I can do it, and it won’t always be this scary.”
  • One reason that taking pills can be scary is that it can be an unpleasant reminder that you need the pills.
  • If that’s a barrier, it might help to remind yourself that you need the pills whether you take them or not.
  • Or you might know that it causes side effects you hate.
  • It also might help to complain about this to yourself, along the lines of “I really !#$!$# hate having to take this pill”.
  • (Having to take pills can suck, and it’s ok to have feelings about it.)

If the issue is reluctance or reservations about the pills:

  • I’m somewhat uneasy about mentioning this, because logistical difficulty is often dismissed as unwillingness to take pills.
  • That said — sometimes the problem really is that someone is trying to force themself to take pills that they don’t really want to take.
  • Everything is harder when you don’t want to do it.
  • There are all kinds of reasons that people might not want to take medication. (Some good reasons, some bad reasons).
  • Eg: Some people feel ashamed of needing medication, or feel like they should be able to somehow will themselves to not need it.
  • Eg: Sometimes the side effects really suck. Sometimes side effects mean that a given treatment needs to be reconsidered.
  • Eg: Sometimes people take pills that don’t seem to be working, and that can be demoralizing.
  • Eg: Sometimes people are misdiagnosed, and prescribed medication that isn’t appropriate, (or suspect that they were misdiagnosed).
  • Eg: Sometimes things that seem like a good idea in the doctor’s office don’t seem like a good idea in day-to-day life.
  • Eg: Sometimes when people have been taking a pill for a while, they forget what it was like without the pill — but keep noticing the side effects. This can make it hard to feel that the pill is still worthwhile.
  • Eg: Sometimes people come under intense pressure from others to believe that a particular pill will fix things. This can get complicated if the pill isn’t actually the right solution.
  • (And there are any number of other reasons).
  • Sometimes the solution to this is changing your attitude towards your medication, and sometimes the solution to this is changing your treatment plan. (And sometimes it’s a combination of both).
  • So it might be worth asking yourself: How do you feel about taking this medication, Is this a pill you want to take?
  • Why are you taking it? Why was it prescribed? Do you agree with the reasons?
  • Are you having side effects that suck? Are you questioning whether the side effects are worth it?
  • Is there another option you want to consider, or does this seem like the best choice for now?
  • If you really are reluctant, err on the side of taking that seriously. You may have a good reason, and it may lead to needed changes.
  • If you think about it and decide that your reluctance is irrational, that can also be very helpful.
  • Either way, if the problem is reluctance, thinking through things and getting to a point where you feel confident that you’re making the right choice can help a lot.
  • *All that said*, it’s important to remember that taking pills can be hard for all kinds of different reasons.
  • Some reasons it can be hard to take pills have absolutely nothing to do with how you feel about them.
  • Wanting to take pills doesn’t always make it possible to take pills.

Sometimes pills are easier to take if you associate them with an action you do every day rather than with a time. Eg:

  • If “take nighttime pill at 11pm” doesn’t work, “take nighttime pill when I brush my teeth” might.
  • If “take morning pill at 8am” doesn’t work, “take morning pill after I eat breakfast” or “take morning pill when I get into my car/bus to go to work/school” might work.
  • Or “I’ll take my pills when my kids come home from school and I’ve given them theirs”.

Sometimes changing where/how your pills are stored can make a big difference, for instance:

  • Keeping pills in the medicine cabinet can make it easier to take them when you brush your teeth
  • Keeping pills next to your bed can make it easier to take them when you get up and/or when you go to bed
  • If you frequently forget to take your medication, keeping some in your purse/ backpack/etc can make it easier to take it once you realize you forgot.
  • If you need to take medication when you eat, keeping the pills near your food might help.
  • Some people find pill sorters really helpful. They’re clear box-things with a box for each day, and at the beginning of each week you put a week’s worth of pills in them. This can also be a way to tell whether you’ve taken a given dose or not.
  • Sometimes you can get pills packed in blister packs, with a compartment for each day.
  • (Birth controls are usually packed this way, and some pharmacies can pack any kind of pill this way).

If part of the issue is privacy:

  • Sometimes not wanting other people to know can complicate taking medication.
  • This is a common issue for birth control pills — and there are cases you can get for birth control packs that look like little makeup cases. (So you could keep it in your purse and it would just look like you have makeup).
  • (If you’re in a situation in which it’s unsafe for others to know that you’re using contraception, birth control pills may not be the best option. An IUD or Depo-Provera shots might be better. Planned Parenthood can help you consider options.).
  • Similarly, it might help to keep pill bottles inside little containers that don’t look like pill things (eg: Claire’s has coin purses that are a good size for this).
  • Or to get a lockable toolbox and keep the key on your keychain.
  • Or to keep pills in your gym back if you have one — most people are going to assume there are gross sweaty clothes in there and be reluctant to look.
  • If you’re in college and don’t want your roommate to know about your pills, it might work to keep your pills with your shower stuff, and take them when you shower.
  • Or to keep pills in your backpack, go to the bathroom after class, and then take the pills there

If part of the issue is that they’re hard to afford:

  • If you’re taking a name-brand drug, look online for a coupon. A lot of companies offer them.
  • If you’re taking something insurance isn’t covering, GoodRx can often save you a LOT of money. (It tells you about coupons, and shows you which pharmacy near you has the lowest price.)

You can only fight evil as the person you really are

Real Social Skills

When you’re fighting evil, it’s important to be aware of your limitations. You can only fight evil as the person you really are. Trying to ignore your limitations will not make you a better activist — it just crushes you.

Fighting evil is a lot of hard work. It’s not just about being a good person, or caring, or having the right values. Mostly, it’s work. And no one has infinite capacity to do that kind of work.

In fact, no one has infinite capacity to do *any* kind of work. As human beings, we’re limited. We have bodies, and needs, and we can’t do everything. Trying to work flat out all the time doesn’t end well, no matter how important the work is.  

One of the things we need is love. Part of that is being aware that not everything is evil. Some things are good. Some things are amazing. Some things are important in other ways. And, no matter what, people matter, and our world is worth fighting for.

Fighting evil is incredibility emotionally draining. In order to fight evil, it’s generally necessary to come into close contact with it. And to face the fact that not everyone is on your side, and not everyone means well. Many people act with active malice or callous indifference. It can be very hard to keep going when you lose an important battle and feel the weight of the consequences. It can be very hard to avoid slipping into despair. Love is one of the most powerful defenses against despair.

It is not only ok but *necessary* to find things that you can value and enjoy. Valuing your own life and the things you enjoy is an important act of resistance. Keep in mind that one of the lives you’re fighting for is your own. You are worth fighting for.

You may have to do hard, draining things that no one should ever have to do. You may have to make sacrifices. You may need to learn how to do things you never thought you’d need to do. But you don’t have to do more than you’re capable of doing — and trying to ignore all of your feelings and limitations will not help.

Understanding your limitations actually makes you more effective (at activism and at anything else you might want to do.) Working with your brain and body works better than trying to become a superhero through sheer force of will. You can only fight evil as the person you actually are.

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.

You can do more when you remember that you’re disabled.

Real Social Skills

People with disabilities are often taught the anti-skill of pretending to ourselves and others that we have no disability-related limitations.

Most people (disabled or otherwise) have the related anti-skill of assuming that everyone present has pretty much the same physical and cognitive abilities. (Or, in other words, that no one present has a disability that significantly affects physical or cognitive functioning.) This often leads to the assumption that people who aren’t doing a task either haven’t been told what to do, or aren’t sufficiently motivated to do it.

These two anti-skills can make it very, very hard to solve problems when something goes wrong for disability-related reasons.

This kind of conversation tends to happen a lot:

  • Someone: You need to do the thing.
  • Disabled person: I’m having trouble with the thing.
  • Someone: “Can’t you just do the thing this way that sounds reasonable but is actually impossible for you?”
  • Disabled person: “You’re telling me it’s possible in tones of absolute conviction and are making me forget that I won’t be able to do it that way. Ok, I’ll do the thing from now on.”
  • The disabled person, predictably, fails to do the impossible thing.
  • Someone with an entirely reasonable need for the thing to get done: Why didn’t you do the thing?!
  • Disabled person: I don’t know. I’m sorry, I’ll try harder, I’ll do it from now on.
  • This, predictably, doesn’t work either. 
  • The task doesn’t get done, because it’s impossible to do things that way.
  • In these situations, disability is neither acknowledged nor accommodated, and things end badly for everyone.

Or, to give a less abstract example:

  • Aubrey has severe ADHD. She’s been fired from several jobs for failing to keep track of things and missing key deadlines, and she’s on thin ice at her current position. Blair, Aubrey’s boss, is running out of patience for the problems caused by Aubrey’s overdue work.
  • Blair: Aubrey, you’ve missed several deadlines, and it’s causing serious problems for the team. What’s going on?
  • Aubrey: I’m having trouble keeping track of everything.
  • Blair: Most of us here use to-do lists on our cubicle whiteboards. I’ve noticed you don’t have a to-do list on your whiteboard. Can you do that from now on?
  • Aubrey (who has never, ever used a to-do list successfully): Ok, I’ll start using a marker board and meet my deadlines from now on.
  • Blair believes that everyone can use to-do lists, and has never thought of the possibility that anyone might not be able to.
  • Blair is making a suggestion that from his perspective is completely reasonable and possible. 
  • Aubrey responds to Blair’s certainty, and forgets that her limitations will prevent that from working for her. 
  • She believes, in the moment, that if she tries hard and takes enough responsibility, she’ll be able to use the to-do list and meet her deadlines this time. 
  • Even though that’s never worked before, and there’s no real reason to believe that it will work any better this time.
  • Trying hard doesn’t make disability go away, and it doesn’t make impossible things possible.
  • Aubrey, predictably, fails to use the marker board, because that strategy doesn’t work for her. And she, predictably, gets fired, because the tasks need to get done and she’s not doing them.
  • From Blair’s perspective, Audrey was given a lot of patience, guidance, and multiple chances.
  • Blair has a legitimate need for the work to get done.
  • This is probably going to keep happening, so long as Audrey tries to rely on willpower to solve problems rather than honest assessment of her capabilities.

When others expect us to do impossible things, it can be hard to remember that they are impossible. Particularly if we’re told that they’re easy or that everyone can do them. Especially if we are surrounded by people who are successfully doing the thing.

All of this can be very disorienting, especially if someone whose opinion we care about is angry or disappointed. It can be surprisingly difficult to keep in mind that disability is real.

It’s also crucially important. Agreeing to do something impossible that “everyone” can do doesn’t magically give us the ability to do it. It just sets us up for failure.

We are all much better off if we face reality and spend time doing things that are possible. Everyone else does. It’s well-known that expecting people to do impossible things is counterproductive and demoralizing. Only exceptionally unreasonable employers expect people to lift 300lbs, sprout wings and fly, turn lead into gold, or decrypt 128-bit encryption keys in their heads.

It’s just as unreasonable to expect disabled people to do things that our impairments make impossible. One limitation we share with everyone is that pretending that something is possible won’t make it possible. We are much better off acknowledging reality, working with our brains and bodies rather than against them.

This is hard. Remembering the truth often requires us to fight through shame and disorientation, or to violate serious taboos. No one succeeds at this 100% at the time, but it does get easier with practice. It’s also really, really worth it.

Whenever you are able to stop trying to do an impossible thing through sheer force of will, it makes it more possible to do things. You don’t have to overcome disability to do things that matter. You just have to find things to do that are actually possible, with the abilities you actually have. The things that you really can do are worth doing.