It is possible to have nuanced and productive conversations online in text-based interactions.

It is possible to have nuanced and productive conversations online in text-based interactions.

Some of the skills that are important online overlap with the skills that are important offline, eg:

  • Making sure that you’re understanding someone correctly and that you’re understanding them correctly (some of the mechanisms are different, but the need to remember to do it is the same).
  • Remembering that no one knows everything, including you.
  • Remembering that you can decide who you want to talk to, and that you don’t have to have intense conversations with everyone who pays attention to you.
  • Keeping in mind that the person you’re talking to is also a real person.

Some skills that can be useful in person don’t work online, for instance:

  • Paying attention to other people’s body language can be useful in person, but online no one can see body language.
  • Expressing your thoughts through body language can be useful in person, but online no one can see body language.
  • Making or faking eye contact can be a useful way of signaling respect or attention in person, but it doesn’t work online. (It’s not always useful or possible in person either, it just can be sometimes for some people.)
  • Paying attention to tones of voice can be useful in person, but tones of voice aren’t available in text in the same way. (There are other ways to convey tone online though.)
  • In person, clothes or physical space can sometimes express certain things about what kind of conversation it is. Online, this is much less possible even if you post pictures.
  • (A caveat: I’m mentioning these skills because they are things that a lot of people rely on heavily, but none of them are universally useful or universally possible. For instance, sometimes eye contact can make it impossible to have a conversation.)

Some of the skills used for online conversations are different from the skills used in person, for instance:

Short version: Having good conversations on the internet is very possible, but some of the skills are different from the skills of in-person conversations. It can be a learning curve, especially at first — and it helps to keep in mind that it’s possible.

Struggling more with disability in times of political emergency

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

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

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

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

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

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

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

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

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

Calling hard things easy does not make them easy

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:

  • Person: I need to do this thing.
  • 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.

Short version: If you’re saying to yourself “Why haven’t I done this easy thing?!”, the thing is probably not actually easy. 

Beware of charisma mirrors

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):

  • Charisma Man is a bad leader. He talks a lot about important causes, but doesn’t do any effective work on them. 
  • 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.
  • They are sincere, and they think Charisma Man is too. 
  • They will tell everyone that Charisma Man is kind and wise and good.
  • 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.

If you are admiring a leader in an unbounded way and losing sight of your own worth, you might be looking at a charisma mirror rather than reality. It’s worth asking yourself: 

  • 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. 

“But it will confuse the children!”

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.
  • Some people are relatives and some people aren’t.
  • 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.

Two ways in which representation matters

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. 
  • The organizers say something to the effect of “Actually, one of the panelists has [some disability or other]”.

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.

Sometimes conferences forget that diversity still matters when the topic isn’t disability or general intersectionality:

  • 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.

Sometimes conferences forget that the disability community is diverse:

  • Many disability rights activists are also marginalized in other ways.
  • 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.
  • Some disabled panelists on panels about topics unrelated to disability/diversity talk about disability and some don’t.
  • (Because not all disabled people are or want to be disability advocates.)

Short version: 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.

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.

Short version: 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.

When disability professionals say “tell us your story” and mean “tell us we’re wonderful”

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.)

When disability professionals *mean* “come make us feel good about ourselves”, what they usually *say* is some version of “we have so much to learn from your unique perspective” or “my colleagues need to hear your story”. When disability professionals ask a disabled person to “tell your story”, they generally expect us to follow these unwritten rules:

  • 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.
  • Make sure that you tell the story in a way that doesn’t make them feel ashamed or responsible for any of it.
  • 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.

I am not the validation fairy, and neither are you.

Short version: Disability professionals who say “tell us your story” often mean “make us feel good about how we’re treating disabled people”. If you’re considering accepting a storytelling speaking engagement, it’s worth thinking about whether the people considering bringing you in are actually willing to listen to you.

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

Sometimes camps, schools, and other programs for kids think “mother” when they should be thinking “parent or guardian”. In addition to being sexist, this kind of bias can cause a number of other problems.

When programs for kids think of “mother” and “parent” as synonyms, they often end up forgetting that other parents and guardians exist. When they think of “mother” and “primary caregiver” as synonyms, they often fail to contact the appropriate adult.

For instance:

  • Susan, an eight year old, just fell off the jungle gym and needs to be taken to the hospital.
  • Susan’s teacher, Ruby, calls 911.
  • 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.
  • Although Susan’s emergency contact form has a note saying to call Christopher first, it doesn’t occur to Ruby to do so, because she’s thinking “I need to call Susan’s mother”, and looking at the “mother” line of the form.
  • 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.
  • Not all mothers are primary caregivers.
  • 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).

Short version: 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.

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.