Tag: broken links

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.

Solidarity with disabled presenters who are subjected to ableist laughter

Real Social Skills

A challenge to disability professionals and disabled presenters at conferences and panels: Please find a way to respond to the routine contempt that presenters with disabilities are treated with.

I’ve gone to a fair number of disability-related conferences in the past few years. At nearly every conference, I saw an audience laugh at a presenter/panelist with a developmental disability. This happened particularly often to presenters with intellectual disabilities, but I also saw it happen to autistic presenters and presenters with speech disabilities.

This isn’t a matter of random jerk encounters; it’s a major cultural problem. Even disability professionals who pride themselves on inclusivity and respect tend to behave this way.

This isn’t nice laughter. It’s not a response to something funny. It’s a response to presenters talking about what they’re proud of, what they’re good at, or talking about wanting control over their own lives. People also laugh similarly when parents and siblings talking about their disabled relative wanting autonomy or objecting to being treated like a little child. This happens all the time, and it needs to stop.

If you’re moderating a panel and the audience laughs at a panelist, here’s one method for shutting this down:

Be proactive about taking the panelist seriously:

  • Don’t look at the audience while they’re laughing, and *especially* don’t laugh or smile yourself.
  • Wait for the audience to stop laughing.
  • Pause briefly before going on. This will make the laughter feel awkward.
  • Ask the panelist a question that makes it clear that you respect what they’re saying.
  • You can explicitly ask “Did you mean that seriously?”
  • You can also be a bit less direct, and say something like “That sounds important. Can you say more?”
  • You can also ask a follow-up question about the specific thing they were saying.

I think that we all need to be proactive about changing this culture. (Including disabled presenters who get laughed at; we need to insist on being taken seriously. More on that in another post).

“Can everybody hear me?”

Real Social Skills

Presenters often open by asking “Can everybody hear me?” or “Can everyone hear me without the microphone?”

This isn’t a very effective way to find out if everyone can hear you. It feels like asking, but it isn’t really — because it doesn’t usually give people the opportunity to say no.

If you want to know if everyone can hear you, this way of asking works better:

  • First, ask if everyone can hear you. This will get the attention of the people who can.
  • Next, ask everyone “Can the person next to you hear me?”
  • Wait 7 seconds for people to ask each other
  • Next, say, “Raise your hand if you or someone near you needs me to talk louder or use the microphone.”
  • Wait at least 7 seconds before moving on. 
  • (7 seconds feels really long as a presenter. It helps to literally count silently to yourself).

Asking this way solves two problems:

It makes it easier for people to hear the question:

  • If someone can’t hear you well, they may not hear “Can everybody hear me?”
  • This can give you the misleading impression that everyone can hear you.
  • When you ask, “Can everybody hear me?” the people who can, tend to respond “yes” immediately
  • The people who *can’t* hear you well, often don’t hear the question.
  • Or they may not understand what you’ve said until you’ve already moved on.
  • But they probably *can* hear people who are close to them talking to them directly.
  • Asking “can the person next to you hear me?” makes it more likely that people who can’t hear you will understand the question.

It makes it easier for people to respond to the question:

  • Saying “Can everybody hear me?” or “Can everyone hear me without the microphone?” *feels* like asking, but often it really isn’t.
  • The problem is that asking that way doesn’t give people an obvious socially acceptable way to respond.
  • So in order for people to say “I can’t hear you” or “I need you to use the microphone”, they have to interrupt you.
  • Which feels like a conflict, and most people don’t want to go into a presentation and immediately have a conflict with the presenter.
  • It also makes them have to identify themselves as having an inconvenient impairment in front of the whole group.
  • That’s uncomfortable on a number of levels, and may be actively frightening.
  • Not everyone is going to be willing or able to interrupt you or take risks.
  • Even when people are willing, it’s still anxiety provoking in a way that’s likely to make your presentation less comfortable and effective
  • Giving people a clear way to respond gets you better information, and helps you to build a better rapport with your audience
  • (And doing it in the specific way I suggest makes it possible for people to let you know they can’t hear you without having to interrupt you, identify themselves to you, or identify themselves to the whole group.)

Short version: If you’re giving a presentation, asking “Can everyone hear me?” probably won’t result in people who can’t hear you telling you so. Scroll up for more detailed information about a more effective approach and why it works better.

Learning to listen

Real Social Skills

One of the reasons this blog is called “Real Social Skills” is that the skills needed in order to listen to people with disabilities are not seen as “social skills”.

Disabled people who communicate in unusual ways are usually seen as having a social skills problem. People who don’t understand what disabled people are saying are *not* usually seen as having a social skills problem. The disabled person is almost always blamed. It doesn’t have to be like this; it’s a problem with our culture; this is something that we can change.

Listening to other people (disabled or not) involves a lot of skills. No one is born knowing how to understand what others are communicating — we all have to learn how to listen. And we’re never done — there is always more to learn about listening and understanding other people. We should all have an expectation that learning skills for listening to people who communicate atypically is part of that. No one is too young or too old to learn to listen.

For instance, all of these things are listening skills:

  • Understanding what someone who has a heavy CP accent is saying
  • Maintaining a conversational rhythm with someone who takes longer than most people to process or express themself
  • Having a conversation with someone who doesn’t make eye contact, and figuring out alternative ways to tell when they are and aren’t paying attention
  • Noticing when repetition is communication
  • Understanding the indirect communication of people who can only use the limited core vocabulary words available on their communication devices
  • Giving someone who has been through intense compliance training the space they need to express their own thoughts rather than yours
  • Paying attention to what someone who speaks oddly is saying rather than writing it off as rude or cute 
  • Listening to someone who has both communicative and non-communicative speech, and figuring out which words are and aren’t intended as communication
  • Listening to someone who has both voluntary and involuntary motion, and figuring out which gestures are and aren’t communication
  • And so on.

No one is born with fully-developed listening skills. Learning to listen effectively is a lifelong process. Learning to listen to people with communication disabilities needs to be part of that.

Some inclusion requires ongoing effort

Real Social Skills

Inclusion means a lot of different things. Sometimes inclusion can be passive, sometimes it needs setup, and sometimes it needs ongoing effort and/or expense.

Sometimes inclusion is passive. In that sense, it’s the opposite of active exclusion.

Some examples of passive inclusion:

  • Meeting in a building that happens to be accessible.
  • Not harassing disabled people with intrusive unwanted “help”
  • Seeing a conspicuously disabled adult alone in a public space without assuming it’s somehow an emergency or that they’ve escaped from needed supervision. (And therefore not bothering them.)
  • Raising no objection when people bring service dogs into a store or some other place
  • Not having an admissions policy that prohibits people with certain disabilities from enrolling in a school

Sometimes to get to passive inclusion, you have to spend some time changing one thing or setting it up. After the temporary period of active change, the inclusion becomes passive.

Some examples of inclusion that requires setup, but may not require ongoing active effort:

  • Building a wheelchair ramp
  • (Or renovating an unsafe ramp and bringing it up to code)
  • Hiring an architect knowledgable about accessibility when you’re building a new building
  • Making your book available on Bookshare 
  • Changing a restrictive admissions policy

Sometimes there is no passive way to include people. Sometimes inclusion means active ongoing effort or expense

A couple examples of active inclusion:

Captioning:

  • Some people need captioning to understand speech reliably. (Including many people who can hear).
  • Captioning takes time and human effort. Computers can’t do it; it has to be done by people.
  • Live captioning has to be done by experts (in CART or TypeWell), and it’s inherently expensive.
  • CART or TypeWell captioning events/classes in real time takes time, effort and expertise. It is inherently expensive.
  • High quality captioning also requires ongoing collaborative effort with the providers – people doing the captioning need to understand the words you’re saying in order to transcribe them accurately. So they need  to be provided with any acronyms, technical vocabulary, or culturally specific words you will be using.
  • If videos and events/classes aren’t captioned, a lot of people are passively excluded.
  • There’s no cheap or passive way to include them. Inclusion requires effort and resources.

Alternative format materials:

  • Some people can’t read standard print.
  • In order to access education or events involving print, they need materials in an accessible format
  • (Eg: electronic copies, braille, scans, large print, audio recordings, or something else, depending on the person)
  • Someone has to convert materials to an accessible format, every single time. This is inherently time consuming, and may in some cases require expertise or expensive equipment.
  • Every time materials aren’t converted, print disabled people are excluded.
  • There is no passive way to include print disabled people.
  • Inclusion of print disabled people is only possible when communities and schools and teachers are willing to put effort, time, and resources into inclusion.

There are many, many more examples of all three types of inclusion. When we talk about inclusion, the conversation needs to be about all three. Passive inclusion, setup inclusion, and active inclusion are all vitally important. People with disabilities are worthy of time and money.

Short version: Sometimes inclusion is easy and sometimes it’s hard. Sometimes inclusion means that you stop actively excluding people, and include them by letting them be. Sometimes inclusion means setting something an access feature initially, then including people by letting them be. Sometimes inclusion takes ongoing effort and expense. Sometimes inclusion means you stop passively excluding people, and start actively including them. All of these forms of inclusion are vitally important.

An example of both types of mental health stigma

Real Social Skills

Content note: This post contains both criticism of and respect for the mental health system. If you find either upsetting, it’s likely that this post will bother you.

I wrote recently about two distinct kinds of mental illness stigma. There’s dismissiveness, where people aggressively deny that someone’s mental illness is real. There’s dehumanization, where people believe that someone’s mental illness is real, and treat them as though their condition makes them less than fully human. Both are common, and people who have experienced one more than the other tend to have very different perceptions of the mental health system.

One example of difference in perception: Mental health advocates often say things like “Medication for mental illness is just like insulin for a diabetic”. People who have mostly faced dismissiveness often see this as validation; people who have mostly faced dehumanization often see it as a threat.

From the perspective of someone who has mostly experienced dismissiveness, it might sound like this:

  • I’m really glad that someone understands how serious my medical condition is
  • People have told me over and over that I don’t have a real problem
  • Or that medication is just a crutch I’m using to avoid dealing with things
  • Or that it’s whiny to want medication
  • Or they might say things like “You’re not sick. People with cancer are sick.”
  • My medication is really, really necessary
  • Or even: my medication saved my life, and I think I’d die if I stopped taking it.
  • I’ve had to fight my doctor, my family, or my insurance company to get access to the medication I need.
  • It messes up my life when people don’t take my need for medication seriously.
  • I’m glad someone gets it about how real my medical condition is, and how important it is for me to have access to medication.

For someone who has mostly faced dehumanization, a statement like that might sound more like this:

  • People have treated me like I’m not a person, and use analogies to physical conditions to justify it.
  • People have made me take medication I didn’t want to take, that did things to my brain and body that I didn’t like.
  • They’ve done this to me in order to change how I felt, thought, or behaved.
  • They’ve told me that what they were doing to me was just like giving insulin to a diabetic.
  • And that this meant I could not possibly have any valid reason to object to the treatment they wanted me to have.
  • But diabetes and mental illness aren’t actually all that similar.
  • Insulin-dependent diabetics who refuse treatment die. When I refused treatment, I didn’t die. It’s not the same. I’m not sick in that way.
  • The way I am is not the same as having a life-threatening physical condition with an obvious straightforward life-sustaining treatment.
  • It’s important that people understand the difference.
  • When they don’t understand the difference, they treat me as though I’m not a real person unless I am on the medication they want me to be on.
  • People say “unmedicated” like it means violent, dangerous, or incapable of understanding something. It doesn’t. It just means that someone isn’t taking medication. That doesn’t tell you anything in itself.
  • I need people to respect me as a person, and respect my right to make treatment decisions. When they don’t, things can get really bad really fast.

There are numerous other examples of things like this. Most things people say about mental health look very different to people who have primarily experienced dismissiveness than they do to people who have primarily experienced dehumanization. Neither perspective is right or wrong exactly; both are important and incomplete.

Access to psychiatric medication is important; respect for the humanity and human rights of people who have been diagnosed with mental health conditions is also important. Things aren’t great for anyone, and they could be a lot better for everyone.

Short version: Mental health discourse often looks very different depending on perspective. People who have mostly faced dismissiveness tend to see things one way; people who have mostly faced dehumanization tend to see things a different way. Scroll up for a concrete example.

Two kinds of mental health stigma

Real Social Skills

Content note: This post contains both criticism of and respect for the mental health system. If you find one or the other upsetting, this post will likely bother you.

There are two basic kinds of mental health stigma: dismissiveness, and dehumanization. Mental health conversations tend to have trouble acknowledging both at the same time — usually it’s at most one.

Dismissiveness stigma is when people deny the reality of mental illnesses. This plays out in a number of ways. One classic example of dismissiveness is “antidepressants are just a tool of capitalism to stop people from noticing that things are wrong”, or “Stop complaining. There are people with real problems”. There are many other examples.

Dehumanization stigma is when people deny the humanity of people with mental illnesses. A classic example of this is people who believe that the purpose of mental health treatment is to reveal the real person underneath — and that therefore, any objections they might make to the treatment “aren’t the real them talking”. There are many other examples of this as well.

Dismissiveness and dehumanization are both major problems. They’re both real, and they both do a lot of damage, even up to the point of costing people their lives.

People tend to perceive the mental health system very differently based on which kind of stigma looms largest for them. For a lot of people, it’s much easier to see one type than the other.

People who mostly experience dismissiveness often see the psych system this way:

  • No one took my problem seriously
  • I was scared to turn anywhere for help
  • Once I finally took the leap and went to therapy, things got so much better
  • Or, once I finally stared medication, things got so much better
  • (Or even: medication and therapy saved my life).
  • (Or even: I’m so glad people finally pushed me to get treatment; they were right.)
  • I wish people wouldn’t be so afraid. I wish everyone had access to this.
  • We need to fight stigma so that people can get the help they need.
  • (And to reform laws so that everyone has access).

People who mostly experience dehumanization often see it more like this:

  • When I entered the psych system, people treated me like I wasn’t a person
  • They forced me to take medication I didn’t want to take
  • The drugs didn’t work, and had harmful side effects
  • When I complained, they treated it as a symptom and raised the dose
  • They forced me to be in therapy I didn’t want to be in, and that made me worse
  • When I tried to advocate for myself, people treated it as a symptom, and no one took me seriously
  • Things only got better for me when I stopped therapy and/or medication and started a different approach
  • (Or even: stopping therapy and/or medication saved my life)
  • I wish people wouldn’t be so uncritical of a system that hurt me
  • I wish “unmedicated” wasn’t used as a slur implying that people who make the choices I make are all terrible people
  • We need to warn people, and reform the laws and systems that allow people to be treated this way

Some people’s experiences in the mental health system are positive in ways that nothing else is; some people’s experiences are horrifying. (And for a lot of people, things are more mixed). Neither type of experience is universally representative; both are real and common. Both matter, and need to be part of the conversation.

When most of someone’s experiences are with dehumanization, it can be hard to understand that dismissiveness is also a problem. Or why anyone would regard mental health care as positive, or lack of access to it as a problem. They may also find the terminology of “mental illness” repugnant, and have a strong preference for “crazy”. But it really is the case that for some people, mental healthcare including therapy and medication is a really good thing. And that for some people, the biggest problem with the system is difficulty accessing it (either because others discourage it, or because it’s too expensive.)

When most of someone’s experiences are with dismissiveness, it can be hard to understand that the dehumanization experiences are also real. (Particularly for people who were really afraid of mental health care and then had a transformative good experience with it.) It can be hard to understand why someone would prefer an apparently pejorative term like “crazy” over an apparently-netural term like “mental illness”. It can seem like people must be exaggerating, or that these things only happened in the past, or something like that. But dehumanization is still a problem now, and fighting treatment stigma will not address that problem.

Both dehumanization and dismissiveness are important barriers to people being treated as they ought to be. Because of both types of stigma, people lack access to help they vitally need. For some people, that help is treatment. For others, it’s access to resources like housing, respite, and assistance with food. For a lot of people, it’s both. People’s very real mental health struggles should not be dismissed; neither should the humanity and human rights of people with mental illnesses be denied.

Short version: There are two types of mental health stigma: dismissiveness, and dehumanization. Dismissiveness is when people deny the reality of your condition; dehumanization is when people think that your condition makes you less than human. Dismissiveness is often made better by the mental health system; dehumanization is often made worse. People whose experience is primarily in one category often don’t understand that the other category exists. Both matter, and both need to be part of the conversation.

Drugs, crutches, and other tools

Real Social Skills

Psychiatric medication is highly stigmatized, and so is physical disability. One way that this comes out is that people say pejoratively, “medication is a crutch.”

Why is “crutch” an insult? What do people think is so terrible about using crutches?

I think that it’s a kind of ableism where people don’t understand that disability actually exists. They believe that anyone can do anything, if they put their mind to it and work hard. When people with disabilities can’t do something others can, they assume that we are just being lazy. They assume that about moving, they assume that about moving, and they assume that about thinking.

They believe that if they push us to try harder, then we will learn to stop being disabled. They think that if we stay disabled; it’s because someone’s giving us permission to be lazy. They’re constantly on guard against the possibility of a disabled person getting away with something.

They are aggressively hostile towards any visible adaptive strategy. When they see crutches or medications or whatever, they are terrified that we are getting permission to be lazy.

Sometimes, they think it’s ok for us to use these things, but only if we fall into a very narrow category of people think think have real disabilities. For instance, they might think wheelchairs are ok for paralyzed people, but have no respect for wheelchair users who can walk. Or they might think it’s ok to use medication if you’re trying to stop, but have contempt for people who need medication long-term and have no plans to stop taking it. Or whatever other combination of things. People have a lot of really weird ideas about disability, and just about any prejudice you can imagine exists.

Crutches are a tool. There are other mobility tools. Medications are several different tools. There are other mental health tools. They all have advantages and disadvantages, and everyone has to figure out what works best for them. Every strategy is stigmatized, because ableists expect us to think our way out of being disabled. But crutches aren’t actually bad things, whether they’re literal or figurative. We all find the ones we need.

Short version: People with disabilities need adaptive strategies to work around disability-related limitations. Ableists think that we’re just being lazy when we use adaptations such as mobility aids or psychiatric medication. They often pejoratively say “you’re just using that as a crutch,” as though using adaptive equipment is the worst thing you could possibly do. But actually, there’s nothing wrong with crutches. We all find the ones we need, and that’s a good thing.

Meaningful echolalia

Real Social Skills

Some people communicate mostly in memorized phrases or allusions to stories and events.

It’s actually pretty normal to communicate in phrases and allusions. I think most people communicate that way at least some of the time. For instance, a lot of people make Shakespeare references in situations that have little or nothing to do with literature. A lot of prose and interpersonal communication happens that way.

This is interpreted very differently for some people than others. People without disabilities who mostly communicate in literal language are taken much more seriously when they make allusions and quotes.

When a nondisabled person says “The lady doth protest too much, methinks”, it’s assumed that they’re communicating and that what they say is meaningful. They are usually understood. This is the case even if there are no ladies present and they’re obviously not talking about a lady.

Similarly, when a nondisabled person says something like “A horse! a horse! my kingdom for a horse!”, this is understood as meaning something even if they obviously do not have a kingdom and are known to hate horses.

When someone with a disability communicates in exactly the same way, their communication is often written off as meaningless. It’s often seen as sensory seeking, or stimming, or a persversation, and having no communicative content whatsoever. This kind of communication is often ignored, and also often seen as a problem behavior to be extinguished by a behavior plan.

This is in part because there’s a widespread belief that autistic people are all hyper-literal and only understand literal language. That’s true of *some* autistic people. But there are also autistic people who have the opposite problem. There are people who find it nearly impossible to use literal language to communicate, but who can readily make references and use literary phrases. (This is true for other kinds of cognitive disabilities as well; it’s not unique to autism.)

People who can only communicate in references deserve to have their communication taken seriously. So do people who find references much easier than literal languages. Everyone else is allowed to use references to communicate; people with disabilities have the right to do so as well.

Here’s an example of a situation in which communication is often misinterpreted. Imagine a girl named Sarah:

  • Sarah doesn’t say very many words reliably. She can usually say a few things like mom, food, want, home, and SpongeBob.
  • Sarah watches SpongeBob a lot
  • She wants you and other people in her life to watch it with her
  • She says a lot of phrases from SpongeBob
  • (Eg: “I’m ready!”, “One eternity later”, “SpongeBob, you and I both know you’re just using me as a distraction so you don’t have to write your essay”, “Why is it whenever I’m having fun it’s wrong?”, “I’m ugly and I’m proud!”)
  • Sometimes, the assumption is made that her repetitive phrases are preventing her from developing standard language
  • Or they might think that TV is preventing her from developing standard language and that her access to TV is limited
  • Or they might think that she’s perseverating on SpongeBob in a way that’s preventing learning
  • When maybe what’s going on is that SpongeBob is *teaching* her language and communicative concepts, and she’s trying to use them to communicate
  • If so, she should probably watch more TV, not less
  • And it’s really important for people in her life to listen to her
  • And understand the references she’s making and what they mean to her
  • (Watching the shows with her is probably an important part of that; showing her other shows might be too)
  • If you want someone to communicate, you have to listen to them, even when their communication is unusual

A lot of this post about listening to people whose speech is unusual applies in this situation too.

Short version: Repeated phrases are often meaningful. Some people with disabilities communicate mostly in memorized phrases and references and allusions to stories and other things. Nondisabled people are taken seriously when they communicate this way. Disabled people who communicate in references should be taken just as seriously. (Even when they don’t communicate in literal language very often or at all).

Civility is not the same as affect

Real Social Skills

Having a civil conversation is about mutual listening and mutual respect.

Sometimes that gets conflated with affect — people act like the defining feature of respectful conversation is things like the position of your body, the volume of your voice, and whether you’re using polite words.

Sometimes things like that can be involved in what makes a conversation respectful, but they don’t define it.

The rules of politeness allow people to be dismissive and cruel. Similarly, it is possible to have a mutually respectful conversation that violates the rules of politeness.

For instance, it is often possible to have a mutually respectful conversation with raised voices and cuss words. It is also often possible to use a lot of I-statements and gentle-sounding language to have a conversation that is fundamentally disrespectful and cruel.

Conflating affect with respect ends up drowning out a lot of voices, and privileging people who are good at manipulating the rules of politeness.

(Affect matters, and it’s ok if some kinds of affect are dealbreaking for you in terms of your ability to have conversations with someone. I’m not saying that everything should be acceptable to everyone. All I’m saying is that affecting politeness is not the same as treating someone respectfully.)

Short version: Body language, tone of voice, and affect can be part of what makes a conversation civil and mutually respectful, but they don’t define it.