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.

Tl;dr 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.

“struggling more with disability in times of political emergency” between line drawings of a wheelchair user and someone reading a book

I see a lot of people (especially disabled people hate themselves for struggling with things that they think of as easy, often along these lines:

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• Person: It’s not hard. This is so easy. Why don’t I just do it?

• Person: I know I need to do the thing. It’s been weeks. What’s wrong with me? This isn’t hard. I need to just do it already.

If you’re having trouble doing something, the thing you’re struggling to do is not actually easy. There is no objective difficulty scale. Tasks aren’t inherently easy or difficult — it depends on the person and the situation. Different people find different things easy and hard. Sometimes you will struggle with things that other people find easy. That doesn’t mean you’re failing to do an easy thing. It means that for you, the task is hard.

Sometimes things that are hard at first become easier with practice, or become easier when you learn new skills. Sometimes things never get any easier. Sometimes solutions that work for people who can do the thing without much trouble will work for you too; sometimes you might need support that other people don’t need. 

Sometimes you might need to find an alternative to doing the thing. Sometimes the only solution is to have someone else help you do the thing or do the thing for you. It doesn’t matter if you think it ’should’ be hard or easy, if you’re having trouble doing something, that means the thing you’re trying to do is hard. (And sometimes, it might mean that the thing is impossible.)

Calling something easy does not make it easy, and you can’t make hard things easy by hating yourself. Hard things become much more possible when you accept that they are hard, stop trying to overcome the difficulty through sheer force of will, and seek out solutions that will work for you.

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There are people who look much better than they actually are. They trick other people into admiring them for virtues that they do not actually possess. Sometimes they do this by using their charisma like a mirror. 

It works along these lines (I’m using ‘he’ here both for ease of reading and because this is *often* male-coded behavior, but there are also people who do this who aren’t men):

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• Mostly, Charisma Man insults all the leaders who are doing serious work on those causes for not having fixed it yet.
• Idealistic people see that the problem hasn’t been solved yet, and assume that it’s because the other leaders don’t care as much as Charisma Man does.
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• None of this is actually true. There is wisdom and kindness and sincerity and goodness in the room, but it’s not coming from Charisma Man, it’s coming from his followers. 
• When they look at Charisma Man, they see their own good qualities reflected back, and then give him credit for them.
• Charisma Man is wielding his charisma like a mirror in order to stop people from noticing what he is actually like. 
• People don’t notice all the ways that Charisma Man is failing at leadership because they’re seeing their own reflected goodness instead.
• They also don’t notice all the ways that they are good and competent and valuable because they are attributing everything good they notice to Charisma Man.

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• What does this leader do that I think is admirable? 
• Do they actually do those things?
• Is it unusual to do those things? Who else does them?
• How is this leader helping others to be effective?
• How is this leader valuing other people’s work?
• When there is kindness and wisdom and sincerity in the room, where is it coming from? Is it from the leader, the followers, or both?

If a leader is making you feel like the only valuable thing you can do is follow them, sometimes is seriously wrong. Everyone, including you, has their own good qualities and their own contributions to make. Good leaders don’t want you to depend on them for your own sense of self worth, and they don’t want you to see them as the only person with something to offer. Good leaders don’t want unbounded admiration from their followers; good leaders collaborate and show respect for other people’s strengths. 

image description: "beware of charisma mirrors" written on a vaguely mirror-like shape, next to a cartoon mirror with a cartoony mask face, on a background that's shiny reflective water

When marginalized people exist unapologetically in public, some bigoted people say things like “But it will confuse the children!"

This is about as ridiculous as saying “Don’t pour water there! It will get the fish wet!”

Most of the world is confusing to children, because they haven’t had time to learn very much about it yet. Kids have to learn even really basic things. Some examples of stuff kids aren’t born knowing and often find confusing:

• Door open *and* close.
• Light switches can turn lights on and off.
• Some things belong to you and some things do not.
• Not everything that looks appealing is edible.
• When you’re in public places, you have to wear clothes.
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• Everyone has a name.
• People like different things.
• Holidays exist.
• Not everyone celebrates the same holidays.
• It is possible to read books.
• If you let go of a ballon outdoors, it will almost always float away.
• Even when you are very upset, it is possible to communicate without screaming or hitting anyone.

You’re not going to break children by existing in public as a marginalized person. Even if they are confused, nothing terrible will happen. Children are good at thinking about things they don’t understand and learning new things. Kids are confused a lot; that’s part of being a kid. They are learning, and it’s ok.

Image description: "Telling marginalized people "your identity will confuse the children" makes about as much sense as saying "that water will get the fish wet". between two photographs of fish.

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There seems to be a major disconnect about what it means for a conference to have disability representation. I’ve seen a version of this happen a number of times:

• A panel on diversity or social justice has no disability representation. 
• No panelist talked about disability as a justice/diversity issue, or even alluded to disability experience.
• A disabled person points out the problem to the organizers. 
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Organizers are sometimes genuinely confused about why this isn’t a solution, and I’m realizing that this is in part because “representation” means at least two different things:

Sometimes representation just means diversity of panelists, ie: 

• There need to be panelists who are disabled (and in many context, there need to be panelists who are *openly* disabled). 
• This is important in part because when there are no openly disabled people on a panel, this is often a sign of disability discrimination.
• (Especially if there are no disabled people on *any* panels at a conference, or there are only disabled panelists on disability-focused panels.)
• In some contexts, diversity of panelists is enough.

Sometimes representation means literally being a representative of a community or movement: 

• Sometimes it’s not enough to have diverse panelists. Sometimes it’s necessary to have panelists who can represent other disabled people by speaking on behalf of an organized disability community or movement. 
• In many contexts, there need to be panelists who can speak from a position of expertise about disability issues.
• For instance, if the topic of the panel is intersectional activism or collaborating across movements, you need someone who can represent at least some part of the disability activist community.
• Diversity of identity is not enough in this case, because having an identity is not the same as representing an organized advocacy community.
• Being disabled does not in and of itself make someone a well-informed representative of the organized disability rights community.

Sometimes conferences forget that disability is a justice issue, and neglect to book anyone who can address disability as a justice issue, eg:

• A conference holds a panel on intersectional advocacy called “Showing up for each other: Owning our privilege and leaving no one behind”.
• The panel consists of an LGBTQ group, an anti-racist group, an economic justice group, and a feminist group.
• None of the panelists are disability rights leaders.
• None of the panelists talk about disability rights issues.
• None of the panelists even talk about their own disability experiences.
• On a panel about intersectionality and showing up for each other, disability issues are completely overlooked. 
• Even if one of the panelists happens to have a disability or medical condition, this is still a problem.
• (Especially if the organization holding the conference has a consistent pattern of overlooking disability issues.)
• In this case, something has gone badly wrong and the conference needs to make an immediate plan for making sure it doesn’t happen again.

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• Not all disabled activists are disability rights activists.
• Some disabled activists are focused primarily on other issues.
• Eg: Some disabled activists are leading LGBTQ rights projects; some disabled activists are leading anti-racist organizations.
• If disabled activists presenting about disability are the only disabled presenters at your conference, something has probably gone wrong.
• If there are no disabled people presenting on any other topics, it’s important to think about what they is and what could be done to fix that.

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• Many disability rights activists are also women, gay, trans, black, poor, Jewish, Muslim, immigrants, several of these, or otherwise multiply marginalized.
• Eg: If all of the disability rights activists presenting at a conference are straight white Christian men, something has probably gone wrong.
• If the range of disabled presenters at a conference doesn’t reflect the diversity of the disability community, it’s important to think about why that is and what could be done to fix that. 

Here’s an example of representation in both the diversity sense and the community representative sense:

• There’s a writing conference or a comic conference or something.
• Access needs are met in ways that make it possible for disabled people to go to the conference and present at the conference (without facing insurmountable or humiliating barriers).
• General panels about diversity have disabled panelists knowledgable about disability issues.
• Panels that are specifically about disability are lead by disabled panelists.
• Many panels about topics *other than* disability have panelists with disabilities on them, in numbers that reflect the fact that disability is common.
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• (Because not all disabled people are or want to be disability advocates.)

Tl;dr Representation on panels means at least two things. Sometimes it means a diverse range of panelists; sometimes it means panelists who literally represent a diverse range of communities. Scroll up for reasons this matters, and what problems can be caused when only one type of representation is considered.

Image description: "Sometimes representation means speaking on behalf of a community or movement" on top of a photo of a microphone.

Care Bear stares do not work in real life

In the Care Bears movies, the heroes could solve just about any problem by speaking truth to power. Whenever a handful of bears cared enough to act, they could get together and give the villain the Care Bear stare. Their intense caring made the villain care too — at least until the next episode. (And in the movies, it was sometime permanent.) Whenever they weren’t solving a problem, it was because they were failing to care about it. The real world does not work that way.

In the Care Bears world, caring is magic. In real life, it’s not enough to care about something — you also have to have power. It’s not enough to know what needs to change — you also have to have a strategy for changing it. Sometimes speaking truth of power can be a source of power; sometimes you need other kinds of power. Sometimes you need to vote, get out the vote, build coalitions, wait for the right moment, make compromises, fundraise, reach out behind the scenes or otherwise find another source of power. Most real-life power is partial, most real life change is not fully satisfying — but it’s real, and it’s worth pursuing.

People unfamiliar with advocacy sometimes cause problems by expecting Care Bear stares to work in real life. They assume that any group of activists who cares about something should be able to get together, speak truth to power, and change hearts and minds with the sheer power of concentrated caring. As a result, when they see that a handful of activists who say that they care about a problem have not solved it, they angrily assume that this means that the activists just don’t care enough to be willing to do the Care Bear stare. When people aren’t solving a problem, it’s important to ask *why* they’re not solving the problem. Sometimes it’s because they don’t care, but often it’s because they don’t have the power to make all of the change they want to make. Often, they’re doing the best they can with the resources available to them.

This also happens in politics: For instance, people sometimes ignore the implications of the fact that the Democrats are the minority party in Congress and that there is a Republican in the White House. They believe, implicitly, that if the Democrats just *cared* enough, they would be able to stop the Republicans from passing bad laws and appointing awful people — and that they could pass the laws that we need without any Republican support. They sometimes reach the dangerous conclusion that Democrats don’t really care and aren’t worth voting for. But in real life, Democrats don’t have the option of using the Care Bear stare — they need power. If we want the Democrats to have the power to protect us from Trump and pass better laws, we have to vote in more of them. 

People also sometimes expect *themselves* to be able to use a Care Bear stare. People stuck in this mindset feel a lot of shame when they notice problems that they don’t know how to solve, because they it must mean that they don’t really care as much as they think they do. It is much more helpful to understand that caring about problems does not in and of itself create the ability to solve problems.  In real life, you won’t have the power to fix everything you want to fix, but you will have the power to fix something. When you accept that caring doesn’t create power by itself, it can enable you to find the things that do — including solidarity with other advocates who are doing the best they can.

T;dr Care Bear stares do not work in real life. In real life, caring about a problem does not in and of itself create the ability to fix the problem. In real life, you also have to have power. When people ignore power and expect caring to fix everything, it creates a lot of problems in advocacy.

Image description: A carton person throwing off-color rainbows in the general direction of a sign that says "Care Bear stares do not work in real life"

Women exist

Approximately half of all adults are women. (Sometimes more, sometimes less, depending in part on how gender is constructed in a particular culture.) Despite this, many of us have been socialized to forget that women exist when we’re trying to understand why things happen or how society works. 

This is particularly striking in historical scholarship. Before female historians were common, most history books were written as though only men existed in the past. Historical theories that account for the existence of women are a fairly recent development. The gaping holes in older theories can be really shocking when you’re more accustomed to remembering that many people are women.

Implicit bias against noticing women isn’t just a problem in history, and it’s not just a thing of the past. Even now, many people (of all genders) forget that women exist when they’re thinking about “people”. If you want your theory to make sense, it’s worth explicitly checking yourself for implicit bias. 

Some questions worth asking:

• Am I assuming that everyone is male?
• Does my theory account for the existence of women?
• Does my theory account for the fact that around half of all adults are women?
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• How might this issue affect men, women, and nonbinary people differently?
• How might men, women, and nonbinary people be playing differing roles in this issue?
• Are all of my examples men? Are any of my examples women?
• If I add some examples involving women, does the issue start looking different?

Tl;dr Women exist and make up around half of the population, but we’re often socialized to mentally edit them out. When you’re trying to figure out a theory about how society works, make sure your theory accounts for the existence of women.

Image description "women exist" between two female symbols.

If a disability professional asks you to come and address their professional group, be very careful — especially if they ask you to "tell your story". Sometimes disability professionals are prepared to learn from disabled people, but more often than not, it’s a setup for humiliating emotional exploitation.

Most disability professionals form their professional consensus on The Enlightened Approach to Disabled People without many or any disabled leaders in the room. Having already decided what they will do to us, disability professionals then bring in disabled people as validation fairies to help them feel the way they want to feel about it.

Even if the person approaching you seems nice, it’s worth being cautious — don’t trust a smile; look for evidence about whether or not they are prepared to take you seriously as an expert. Most disability professionals don’t want to learn from our expertise; they want us to help them feel good about themselves. What they usually want from us is an emotional performance that validates their self image and the approach they’ve decided to take to disabled people.

They want to feel inspired, without facing difficult truths. They want to feel moved, without changing. They want to say “I learn so much from you!” without reconsidering their worldview or professional practice,  and they want to say “You have such a unique perspective!” to every disabled speaker, while treating us as largely interchangeable. (Disability professionals who are actually prepared to learn from us acknowledge gaps in their expertise, and seek out disabled experts to teach them what they need to know.)

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• Tell the audience horror stories about your childhood that allow the listeners to feel righteous because We Would Never Do Such Things.
• Make sure that the stories are graphic, but not too graphic. Horrify the audience enough so that their pulses raise a bit and they feel brave for listening to you, but be careful not to horrify them so much that they have nightmares.
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• Give them someone to identify with so they can feel like excellent people. Usually it's either "my mom never gave up on me!" or "there was this one awesome teacher who showed me how to believe in myself!"
• Don’t talk about the lingering harm done to you, or how it’s affecting you in the present. Don’t make them think about harm done to disabled kids who are facing lifelong consequences of that harm. Don’t talk about present-day injustice, discrimination, or violence.
• Tell your story as a tragic misunderstanding. Don’t talk about discrimination or systematic injustice. 
• Allow your audience to laugh at you. Tell self-deprecating jokes. Don’t insist on respect.
• Don’t describe solidarity with other disabled people, and don’t attribute any of your success to other disabled people who you regard as equals. 
• Don’t describe fighting with a professional and winning, unless you can attribute your victory to someone they can identify with. 
•  Don’t be angry, and don’t describe other disabled people’s anger as legitimate. (Under some circumstances, it may be permissible to describe it as understandable, but only if you’re appropriately condescending and give the impression that the therapy provided by the professionals in the room would fix it.)
• Don’t talk about disability in political terms. Say that “times have changed”, without giving any credit to disabled people who fought for those changes. 
• Do not mention organized groups of disability activists, especially organized groups of disability activists who exist in the present and clash with disability professionals. 
• At the end of the presentation, open the floor for Q&A. When audience members presume that it’s ok to ask you intrusive personal questions, smile and give them an answer that makes them feel good about themselves. 
• When you’re in the audience of their presentations, do not expect this intimacy to be reciprocated, and do not expect them to show similar concern for your feelings. 
• Understand that you’re here to validate them, and they’re not there to validate you. Pretend that what they’re doing is listening and learning.
• Don't break character, and don't drop the mask. Don't acknowledge the unwritten rules or the unwarranted emotional validation they want from you. Accept compliments about your "honesty" and "authentic first hand perspective" with a straight face.
• Above all, do not talk about being harmed by disability professionals who there’s any chance your audience would identify with.

When disability professionals expect you to be their validation fairy, this is a form of ableism and emotional exploitation. They should not be treating your life as a story about their benevolence as disability professionals. They should not be treating you as existing for the purpose of making them feel good about themselves. They should be treating you with respect as a real human being — and if you are an expert, they should be treating you with the professional respect due to a colleague.

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Image description: Text "I am not the validation fairy" next to a line art drawing of a fairy casting a spell with a magic wand.

Not all parents are mothers: A reminder to programs for kids

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For instance: 

• Susan, an eight year old, just fell off the jungle gym and needs to be taken to the hospital.
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• Ruby thinks “I need to call Susan’s mother to let her know that Ruby was just taken to Hypothetical Hospital”.
• Susan’s mother, Melissa isn’t reachable during the day because she works in a secure building without access to a phone.
• Susan’s father, Christopher, *is* reachable. He works from home, and always has his phone with him.
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• Ruby keeps trying to reach Melissa. 
• It takes an hour before it occurs to anyone to call Susan’s *father*.

Or:

David is a twelve year old who has food allergies. He also has a mother, Miriam, and a father, Fred.

• Katie, who runs the kitchen at Camp Hypothetical, has some questions about what he can and can’t eat, and whether the plan for an upcoming camp out will work for him.
• Katie tries calling Miriam, David’s mother. She doesn’t reply. Katie tries again and again, over the course of several days.
• It doesn’t occur to her to try calling David’s *father*, even though she knows he has one — because she thinks of mothers as the parents who keep track of that kind of information.

When you’re working with kids, it’s really important not to treat “mother” and “primary caregiver” as synonyms, and to remember that:

• Not all children have mothers.
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• Not all children who have mothers live with their mothers.
• Not all mothers should be given information about their children.
• Fathers are parents.
• Nonbinary parents are parents.
• When a kid has more than one parent, it’s often best to contact both/all parents (especially if contacting the first parent doesn’t work.)
• Some kids are raised by people other than their parents (eg: grandparents, a sibling, foster parents).

Tl;dr If you’re working with kids and you need to contact their parent or guardian, don’t assume that their mother is the right person to contact. Look at the instructions on their emergency/parent contact form, and follow those instructions. And if you try calling a kid’s mother and don’t get a response, check to see whether they have another parent you should try calling.

Image description: "Not all parents are mothers" written on a chalkboard

The internet is real

The internet is real. The internet exists in the world and it affects the rest of the world.

I’m a person all of the time. I don’t stop being a person when I log on, and neither do you. It matters how we treat each other, and it matters what kind of culture we build through online interactions.

Further, no one can opt out of being affected by the internet. The interactions that take place online impact the whole culture, not just those who are directly participating online. For instance, whether or not someone ever uses a smart phone or takes a selfie, if they spend any time in cities, they’re going to encounter others doing so — and if they go to events, they’re likely going to encounter backdrops made for that express purpose. There’s no way to opt out of being affected by the existence of selfies and selfie culture.

There’s also no way to opt out of the way the internet can be used to attack people. For instance, for over a decade, ratemyprofessors.com had a hotness rating, and female professors couldn’t opt out of being affected by the way that encouraged sexual harassment. Similarly, Monica Lewinsky and others who have faced internet-aided attacks could not have made them go away by logging out.

Online interaction is even being used as a form of warfare. Most notoriously, Russian intelligence agencies successfully used Facebook, Twitter, and Tumblr to interfere with the United States presidential election in 2016. Even if I logged off today and never touched a computer again, I could not opt out of being affected by the fact that Donald Trump became President of the United States in early 2017.

At the same time, marginalized people are also using the internet to build forms of power and solidarity that we didn’t have before. Before I found disability selfie culture online, the only images of people like me I’d ever seen were all illustrating tragic stories about our parents. Connecting with other disabled people online made it possible for me to realize that I could be fully human without being cured — and that I could be taken seriously without becoming normal.

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The internet is real, and the things we do online matter. We can make better choices when we remember that what we’re doing is real.

Image description: Text "the internet is real" typed on a cartoon computer screen

In defense of distracting fidget toys

One problem with the way stim/fidget toys are discussed is that there’s often a false dichotomy drawn between good fidgets that help people to focus, and bad fidgets that distract people. Focus is not the only legitimate reason to use a stim toy.  

Further, being focused on your surroundings isn’t always a good thing. Sometimes, the main reason a stim toy is useful is *because* it is distracting.  For instance, some people use stim toys to distract themselves from trauma triggers. When an environment is triggering, it can be really helpful to have a way of temporarily ignoring it. 

Some people use stim toys to distract themselves from pain or sensory overload. Distracting stim toys can be a way to take a break without having to leave the room. Fidget spinners in particular often work really well for this.

There are any number of ways to use stim toys. Some uses, like holding a rock in order to remind yourself where your hand is, have little or nothing to do with focus one way or the other. They serve a different purpose. 

We shouldn’t let “they help with focus” be the only use of stim toys we acknowledge as legitimate. The other ways they are used also matter. And sometimes, getting distracted is the whole point. 

You can be autistic and have a sexual orientation at the same time.

glittery-cyan-skies asked: 

Me identifying as Demisexual and being on the autism spectrum goes hand in hand for me sometimes. Some days I feel like I'm completely valid because I often exhibit traits of being Demisexual, such as only truly experiencing sexual attraction at least once with someone I had known for a very long time. Then other days I feel completely unsure again because I remember that my autism means that I often only like people after knowing them for a long time. So am I demi or am I just being autistic?

Realsocialskills answered:

I can’t tell you what your sexual orientation is — you’re the only one who can answer that question. Whatever your sexual orientation is, it’s valid. It’s also ok not to be sure. Some people know what their sexual orientation is from a very young age; some people take longer to figure it out. Everyone has the right to be who they are. 

Just about anything we experience as autistic people will be influenced by our autism, including sexuality. That doesn’t make our experiences any less valid — it just means that they’re autistic experiences. Different autistic people fall different places on the gender and sexuality spectrum — we have the same range of sexual orientations that anyone else does. 

Some autistic people find that their experience of sexuality is somewhat different from nonautistic people who share their sexual orientation. For instance, if you’re demisexual, you might find that there are some differences between the circumstances that can lead to attraction for you and the circumstances that seem to lead to attraction for nonautistic demisexual people you know. That doesn’t make you any less demisexual, it just means that having a disability that affects how you relate to people sometimes affects how you relate to people. It’s ok when it turns out that autism matters.

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One way to think about it might be to keep in mind that you’re only one person. Don’t try to separate out a part of you that’s autistic and a part of you that’s valid. Your whole self is valid, and you can be autistic and have a sexual orientation at the same time.

A cartoon protest sign on a pride rainbow background with the text "you can be autistic and have a sexual orientation at the same time"

Question from an anonymous reader:

I regularly babysit a 3 (almost 4) year old who has Autism. He does not speak, and he doesn't yet have a reliable alternative form of communication like signing or AAC, though he probably will soon.

 I have a lot of friends and two cousins who have Autism, but they all speak or sign. I find it difficult sometimes to understand what the kiddo in question is thinking, or wants, and I wondered if you or any of your followers have any first hand tips or advice on how I could better understand him? 

I know everyone is different, and I'm learning to read things like his body language, but I wondered if you/any of your followers who don't speak or spoke later than most remember anything that helped them get across what they meant when they were younger, or things adults did that were especially helpful. He doesn't have the coordination to sign or draw what he wants yet, being so little. I want to help him feel less frustrated and to be as good a babysitter as I can be.

Realsocialskills answered:

For the sake of readability, I’m going to call your cousin Anthony in this post. 

The first thing I’d say is: Listening to Anthony matters whether or not you succeed in understanding him. You may not be able to figure out what he is thinking, he may not yet be able to tell you — but you *can* treat him as a person who has thoughts and feelings worth listening to. That matters in and of itself, and it also makes successful communication much more likely.

Learning to communicate is really hard, even for typically developing kids. (Which is a reason why two year olds have so many tantrums, and why older kids usually grow out of that.) In early childhood education, a lot of what kids learn is that it’s possible to communicate in ways that others can understand — and that words are usually a better option than freaking out. One of the main ways early childhood educators teach kids these skills is by listening to them, and by supporting them in understanding the feelings they’re having. 

Kids with communication disabilities have more trouble learning to communicate in ways that others can understand — and they also often have more trouble learning that communication is even possible. Disabled kids need *more* exposure to adults who want to listen to them, and *more* support in understanding their feelings — but they often get less of both. Their feelings are often ignored, and their communication is often treated as nonexistent. 

All too often, kids with disabilities learn young that no one wants to listen to them. They often try their best to communicate, only to have their attempts interpreted as random meaningless noise or deviant misbehavior. When nobody listens, it becomes really hard to keep trying. One of the best things you can do for Anthony right now is help him not to give up.

It’s important to keep in mind that Anthony is a person with a perspective of his own. Our culture socializes us to see people with disabilities as having needs, but not thoughts or feelings. That implicit bias goes really deep for almost everyone, including AAC experts and long-time disability rights activists. Be careful to treat Anthony as a person with thoughts, feelings, and questions. This is a profoundly countercultural attitude. You can’t assume that it will happen by itself; you have to do it on purpose. (I did a presentation on this for medical providers a while ago which may be of interest.  )

Some specific things you can try:

Say explicitly that you’re trying to understand, eg:

• “I don’t understand you yet, but I’m listening”.
• “I’m not sure what you mean, but I do care”.
• It doesn’t go without saying — and sometimes saying it makes a big difference!
• Look for actions that might be intended as communication:
• Does he point at things? Lead you to things? Flap differently under some circumstances?

Make a guess about what you think he might mean, and act on it.

• It can be worth using words to describe what you’re doing, eg:
• “I think you want the book because you’re looking at the book. I am getting the book”.
• “I think the light is bothering you because you’re covering your eyes. I am turning off the light.”
• He can’t read your mind, so it might not be obvious to him that you’re acting on what you think he’s doing — so tell him!

Name feelings you think he might be having, eg: 

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• “You like the marbles. You are happy.”
• “Jumping is so fun!”
• “You don’t like that texture.”
• (Nb: Telling *adults* what they are feeling in these terms is usually *not* a good idea, but it’s a pretty common method used to help little kids learn about feelings — *if* you know with reasonable certainty what their feelings are.)

Ask questions, and offer choices, eg:

• “Do you want the red shirt or the blue shirt?”
• “Should we read the princess book or the truck book?”
• “Should we go to the swings or the sandbox?”
• Even if he can’t respond, being asked matters — it shows him that you care what he thinks, and that there’s a reason to try to communicate.

It can help to make the options more concrete, eg:

• He might be more able to tell you which shirt he wants if you’re holding both of them. 
• Or if you’re holding one in one hand and one in the other.
• Or if you put them down in front of him.

If he responds to your question in a way that you think might be communication, respond to it as communication: 

• Eg:  “You pointed to the dragon book, so we’ll read the dragon book”.
• Or it may make more sense to just start reading it. Sometimes that works better than inserting too many words. 
• Eg: “Ok, we’ll go to the park”.

You can also try yes-or-no questions:

• “Do you want to go to the park? Yes or no?”
• “Do you want to read the dragon book? Yes or no?”
• “Is the dragon scary? Yes or no?”
• “Is the king silly? Yes or no?”
• Again, even if he can’t respond in a way you understand, trying matters.

You also might be able to teach him to point to things:

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• Again, in the two book example, you can ask him to point to the one he wants.
• You can also show him pointing by doing it yourself, eg:
• Take two books, and say “I choose the dragon book”, point to it, then read it.
• Take two books and ask him “Which book do you choose?”
• (Etc: It can take some time and trial and error to figure out how to teach this in a way that sticks, but it’s often worth trying.)

If he has a way to communicate “yes”, and “no” or choose between options, you can also check your guesses more directly:

• “I think you said park. Am I right?”
• “Did you say park, or something else?”
• “Are you trying to tell me something, or are you playing?”

Remember that words can be communication even when they’re unusual: A lot of autistic people use idiosyncratic language to refer to things, or repeat phrases they heard somewhere else – in a way that they may or may not mean literally. Here’s a method for noticing when repetition is communication , and some thoughts on listening to folks whose speech is unusual.

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• The standard teaching advice is: When you ask a question, wait at least seven seconds before you say anything else.
• This feels a little unnatural — it can feel like a *very* awkward pause, and it can be tempting to jump in and say more stuff to clarify.
• But if you say more stuff to someone who is thinking and formulating their answer, it tends to just give them *more* stuff to process. 
• So give him time to respond — and be aware that autistic people often need longer to process and respond.

If you have an iPad you’re willing to let him play with, iPad use can really help some kids with motor skills and learning communicative cause-and-effect.

• Most kids learn pretty quickly how to scroll through select the app they want, and that skill often transfers.
• Most kids that age like Endless ABC, a really fun pre-literacy words-and-spelling app. http://www.originatorkids.com/?p=564
• (That app also builds an association between interacting with a touch screen and making meaningful sounds)
• You can also try the Toca Boca apps — a lot of kids like those, and some, like Toca Hair Salon, don’t require particularly strong motor skills.
• Often, the best way is to play with the app together — eg, you show them how to drag the letters around, then offer them a turn.
• Or help them out when they get stuck, without taking over.
• Or say things like “which color should we pick? How about purple?” and see how they react.

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• Everything in this post still applies once he gets a device or a system.
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• Having an AAC device will not make him instantaneously able to communicate using words in the way that typically-developing kids his age do.
• While some people learn to use an AAC device fluently very quickly, that is rare. 
• Most people who use AAC because of a childhood speech delay take a long time to learn it.
• And in any case, giving someone a tool doesn’t cure their disability. 
• An AAC user with a communication disability still has a communication disability, and disabilities that interfere with speech sometimes also interfere with language. 
• Even people *without* language disabilities tend to take a while to learn, for all the same reasons that typically-developing kids take a while to learn how to use words to express themselves. Communication takes practice.
• (And also, all existing AAC technology has significant limitations and difficulties. It’s easier for typically developing kids to learn to speak than it would be to learn to use AAC, and having a speech disability doesn’t magically make AAC use easy.)
• AAC implementations can also end up treating AAC use as an end in itself and forget that the point is to support communication. 
• For most AAC users, AAC is one communication mode among many they use, and it’s not always the best one in every situation — eg: pointing to a banana can be a *much* more efficient way to communicate than scrolling through a device and finding the “I” “want” and “banana” buttons.
• If Anthony gets an AAC system, he will still need you to put effort into listening to him, and he will still need you to take all of his communication seriously.

Remember that disability isn’t bad behavior, and don’t be mean:

• Don’t ignore his communication in order to force him to talk or use a system.
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• He’s not struggling to communicate because he’s lazy; he’s struggling to communicate because he has a disability.
• He’s doing something really hard, and he’s in a hard situation, and that needs to be respected and supported.
• You don’t need to introduce artificial difficulty; he is already experiencing more than his share of the real kind.

Anyone else want to weigh in? What is helpful for effective communication with a nonspeaking four year old? You can answer using my contact form.

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Image description: Text "Kids with communication disabilities need to know that you care about listening to them", next to a picture of a young child and a picture of some plastic duplo-style building blocks.

What topics would you like to see me write about?

I'm planning to go back to daily posting, and I'd like your input on topics! I've enabled comments on this post for the next couple of weeks. (I reserve the right to unceremoniously delete comments, but I'll err on the side of not doing so.) 

What questions do you have? What topics would you like to see me address here?

One reason to tell your kids about their disability

Kids eavesdrop. No matter how hard you try to keep things from them about their disability, they will eventually succeed in overhearing you. 

The time kids are most likely to succeed in eavesdropping is when you are the most upset about their disability — because being upset and overwhelmed takes a lot of energy, and it makes it harder to pay attention to keeping kids from overhearing.

Further — kids these days have access to Google. When kids overhear adults talking about their disability, they are likely to investigate by googling it. The first result for their disability is probably *not* what you want your kid to believe about themself and their future.

Talking to your kids about their disability is much better than letting them find out about it from googling what they overhear. 

Image description: "Talk to your kids about their disability" next to a drawing of an adult holding hands with a child.

Don't order people to feel safe.

Social justice workshops often open by demanding that everyone consider the space safe and put absolute trust in the person leading it. For instance, workshop leaders will often say things like “This is a safe space. No one will feel unsafe here — but you might feel uncomfortable confronting your privilege. Understand the difference between being uncomfortable and being unsafe.”

“Everyone will be safe” is a promise we can’t keep. “Everyone must feel safe” is a demand that we have no right to make.

No workshop is actually safe for everyone. Sometimes, people are going to feel unsafe. Sometimes, people are going to *be* unsafe. People who feel unsafe need to be welcome in our workshops — and all the more so, we need to welcome those who are taking significant risks in order to learn from us. 

When we tell people who are feeling unsafe that it must just be their privilege talking, we make the space much more dangerous for everyone in the room. Sometimes, people who feel unsafe are responding to real dangers. If we demand that participants who feel unsafe ignore the possibility that they are right, we are demanding the right to hurt them. That’s not something we should ever do.

Feeling unsafe isn’t always privilege talking. It’s always a possibility, but it’s never the only possibility. Sometimes, presenters aren’t actually as knowledgable and perceptive as they think they are. Sometimes, presenters get things wrong in ways that make the space unsafe for the most marginalized participants in the room. Sometimes, participants are so used to being unsafe that they need a lot of evidence of safety before they’re willing to risk trusting someone. 

One way this can happen is that sometimes participants are marginalized in ways that the presenter doesn’t understand. For instance, people presenting on white privilege don’t necessarily always understand the significance of ableism, people presenting on sexism and misogyny don’t always understand the significance of racism and antiblackness. No one has a perfect understanding of every form of marginalization, and we are better presenters when we keep this in mind. When marginalized people are taking risks in order to learn from us, we need to respect the risks they’re taking and not write them off as a privileged affectation.

This can also happen in other ways. We have power as teachers and presenters, and it is possible to abuse that power. Even when the people we’re teaching are more privileged than we are in every relevant way, it matters how we treat them. Being privileged in society is not the same thing as being safe in a classroom. We are all capable of making mistakes that hurt people, and when we make those mistakes, it matters. 

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Image description: A yellow caution sign next to text "Don't order people to feel safe".

Disability is not an abusive roommate

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Using assistive technology is pretty similar to using technology for any other important reason. Everyone uses technology to do things that their bodies alone would be too limited to do. Most people use cars to go further than they could walk; some people also use wheelchairs to go further than they could walk. Some people type or use communication tablets to say more than they could with their bodies alone; some people use musical instruments; some people use both. People with disabilities have different limitations, and as a result, often benefit from technology that wouldn’t be particularly useful to nondisabled people. 

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Wheelchairs as restraints:

• Anthony lives in a nursing home.
• Anthony speaks oddly, and most people interpret most of what he says as meaningless. They say ‘Anthony doesn’t communicate’.
• Anthony can walk and wants to walk, but the nursing him staff don’t let him. 
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• Every morning, Sage puts Anthony in a wheelchair that he can’t move, and ties him down so he can’t escape.
• Sage tells Marge, a new volunteer, ‘That’s Anthony. It’s so nice to have a volunteer - he’s been spending most of his time in the hallway lately. He doesn’t walk or talk, but he loves visiting the garden! Can you take him there?”
• Marge and Sage don’t know what Anthony actually wants, and it doesn’t occur to them that it’s possible to ask.
• Anthony actually hates the garden and hates being pushed by other people. He prefers to spend his time in the library or with children in the children’s wing.
• Marge assumes that Sage is the expert on Anthony, and assumes that Anthony’s disability prevents him from walking and communicating.
• Marge doesn’t know that Anthony has stopped talking because he’s constantly surrounded by people who refuse to listen to him. 
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• Marge doesn’t know that she’s doing something to Anthony against his will.
• When people see disability and restraint as the same thing, they fail to notice that people with disabilities are being violently restrained — and often unwittingly participate in physical abuse of disabled people. 

The disability-as-restraint misconception also causes people to fail to understand that when they deny people access to assisstive technology, they’re preventing them from doing things, eg:

Mobility:

• Beck is an eight year old who can’t walk.
• Beck has a wheelchair, but he’s not allowed to bring it to school.
• At school, he’s strapped into a stroller that others push around. 
• His classmate Sarah has *never* had a wheelchair that she can push herself.
• At a staff meeting, Lee, their teacher, says “Because of their disabilities, Sarah and Beck can’t move around by themselves. Even though they stay in one place all day, they’re so fun to have in our class!”
• Lee is missing the crucial fact that the reason Sarah and Beck are immobile is because they’re being denied access to assistive technology. 
• When people see disability and externally-imposed limitation as the same thing, they don’t notice limitations being imposed on disabled people. 

Communication:

• Rebecca types on her iPad to communicate.
• Clay takes away Rebecca’s iPad.
• Clay tells Sophie, ‘Rebecca is nonverbal. Her disability prevents her from communicating, but we’re working on improving her speech.’
• Sophie sees that Rebecca can’t talk, and assumes that it’s her disability that’s preventing her from communicating.
• Actually, it’s *Clay* who is preventing Rebecca from communicating.
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I’m sometimes asked “Why do you say “disability” instead of “special needs”?

Here’s the most basic reason:

When people say “special needs”, the next word is usually “kids”. 

When people say “disability”, the next word is often “rights”.

I’m an adult, and I want equal rights. For that reason, I’m going to keep using the language that has room for adulthood and power. 

Autism stereotypes and Not Autism Syndrome

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

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

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

Here’s a Rett Syndrome example: 系统工具_手艺舍:2021-2-20 · 前段时间，微软宣布，将从2021年1月14日开始，停止对Windows7系统的支持。要求那些还没有升级到Windows10的用户，立即升级，保证电脑顺利工作。尽管如此，很多Wind…

And a 手机怎样搭梯子用谷歌:

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

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

Breaking writer’s block by being willing to write posts that don’t feel good enough

I have had writer’s block from hell lately, largely because I’ve been too attached to getting everything right. 

This blog was easier to write when I posted every day, because it meant that I didn’t get trapped in perfectionism-driven writer’s block. I just wrote things that were as good as I could make them in the time I had available, then posted them, then posted more things.

Now that I don’t post every day anymore, my posts tend to get indefinitely delayed. Nothing I write lately feels good enough to post, and I want to just keep working on things until they feel done — but the thing is, there is *always* room to improve posts. Wanting to wait for things to be better isn’t resulting in better posts, it’s resulting in *no* posts.

So, I’m trying to keep in mind what I know: If I want to write good posts, I have to *actually finish posts*. Waiting for posts to be better will not get them written; being willing to write them will get them written. And if I write some bad posts along the way, that’s a step towards writing the posts I want to be writing long-term. Silence will not help. 

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