You are not your child’s voice

You are not your child’s voice. Even if they can’t speak. Even if you understand some of their communication. Even if you fight hard battles to get others to respect and support them.

Even if you need to say things on their behalf that they’re not able to say. Even if you’re currently the only effective advocate they have.

No matter how much you care about your child, no matter how much you get right, you’re not them. They have a perspective of their own, and they disagree with you on some things. (Because they’re people, and no two people agree on everything.)

You are not your child’s voice. You can only speak from your own perspective. You are not them. And you’ll be a more effective and respectful advocate if you keep this in mind.

Be careful about memory games as icebreakers

Sometimes, group leaders like to do icebreakers to help new people meet each other. When you do this, it’s important to select an activity that is likely to be comfortable for everyone involved.

It’s usually better *not* to do activities that involve asking people to perform feats of memory. (For instance, one popular ice breaker involves arranging people in a circle and asking people to recite the name of every person who has gone before them.)

This is a bad idea because there will almost always be someone who is bad at memorizing large amount of information quickly. There will often be someone who is disabled in a way that makes this difficult, and who might not want to demonstrate their impairment to the whole group.

And even if disability isn’t an issue, no one wants to demonstrate in front of a group of people they just met that they’re bad at remembering names.

Ice breaker activities involving memorization are best avoided.

“It’s easy” can make scary tasks scarier

When people are struggling or afraid to try something, well-meaning people often try to help them by telling them that the thing is easy. This often backfires.

For instance:

  • Kid: I don’t know how to write a paper! This paper has to be 5 pages long, and we have to do research! It’s so hard!
  • Parent: Don’t worry. 5 pages isn’t that much. This isn’t such a hard assignment.

In this interaction, the parent is trying to help, but the message the kid is likely hearing is “This shouldn’t be hard. You’re failing at an easy thing.”

If something is hard or scary, it’s better to acknowledge that, and focus on reassuring them that it is possible. (And, if necessary and appropriate, help them to find ways of seeing it as possible.)

For instance:

  • Kid: I don’t know how to write a paper! This paper has to be 5 pages long, and we have to do research! It’s so hard!
  • Parent: It’s hard, and that’s ok. You can do hard things.
  • Parent: What are you writing about?
  • Kid: Self-driving cars. But I can’t find anything.

And so on.

This isn’t unique to interactions between parents and children. It can also happen between friends, and in other types of relationships.

Short version: If something’s hard for someone, telling them that it’s easy probably won’t help. Reassuring them that they can do hard things often does help, especially if you can support them in figuring out how to do the thing.

Thoughts on asking better panel questions

At panel discussions, there is usually a chance for members of the audience to ask questions. If you want to get good answers to your question, it helps to ask the question a certain way. These are not absolute rules, but these general principles often help:

Ask one question:

  • If the panelists are interesting, you will probably have a pile of questions you want to ask them
  • It can be tempting to try to ask all the questions together in one long paragraph
  • That never works, because the panelists don’t actually have time to answer all ten of your complicated questions
  • And if your question gets overly long and complicated, they quit paying attention and just talk about what they want to talk about
  • If you want them to answer a question, you have to pick one.

Make sure your question is actually a question:

  • The point of asking questions is to get the panelists to share their perspective on something you care about
  • The question you ask should be possible to answer, and you should be interested in what the panelists think of it
  • Otherwise it’s not really a question
  • Sometimes people who think they’re asking a question are actually presenting a long monologue about their views on something
  • That really annoys everyone.
  • The people in the audience came to hear the panelists, not you. If you monologue instead of asking a question, it will annoy them.
  • (There’s almost always at least one person who does this.)
  • (There are some exceptions to this: if you’re sufficiently popular in that group that people are likely to be just as interested in what you say, *and* the panelists hold you in high regard and won’t mind, sometimes it’s ok. That’s rare.)

Questions to panelists should be specific, and easy for the panelists to understand. They should also be at least somewhat open-ended, so that the panelists will be able to give substantive and nuances answers. A few possible scripts for forming good questions (there are many others):

Asking how something works, or how something will happen, eg:

  • “How will the new version of your app support VoiceOver?“
  • “How do you decide what to put in the parameters for casting calls?”
  • “How do you respond when the alarm goes off in the spaceship?“

This can also be a short statement, then a question, eg:

  • “A lot of comedians tell offensive jokes. When you’re working on a routine, how do you figure when a joke you’re considering is crossing a line?”

Asking them to expand on something interesting they referenced by starting with “Can you say more about…”, eg:

  • “Can you say more about the time you quit a job at the Very Highly Regarded Charity for ethical reasons?“
  • “Can you say more about your methods for attracting butterflies without also attracting wasps?”

“What do you think about..?” or “Here’s a statement. What do you think about that?“

  • This can be good, but it can also be hard to make it specific.
  • Example of an overly vague question: “What do you think about pie?”
  • A better question: “What do you think of replacing cakes with pie on ceremonial occasions?“
  • Another example of a question that would be overly vague in most contexts: “What do you think about progress?”
  • A question that’s more likely to be answerable: “What do you think about the role of People in Our Field in making the world better?”
  • another example: “Some people say that if we wait long enough, things will get better on their own. What do you think about that?“
  • “What do you think about Other Person’s Theory? Does that seem true in your work?”

“Do you think that…”

  • This can be a good way to ask stuff
  • The problem is that it’s prone to cause a question to be overly closed
  • Eg: “Do you think that you will enjoy your next job?” is very unlikely to get a good answer
  • This might get a good answer: “Do you think that other women are still facing obstacles in your field?“
  • Offering alternatives can sometimes make the question seem more open, eg:
  • “Do you think that standardized testing is a good approach to improving special education outcomes, or do you favor a different approach?”

Asking about a rumor:

  • Make it clear which rumor you’re talking about, then ask about it (Asking “So, are the rumors true?” will not generally get an interesting answer).
  • “Is there any truth to that?” will often get a better answer than “Is that true?”
  • Example: “I heard that you’re working on a book of poetry about cats from a laser pointer’s perspective. Is there any truth to that?“

Questions that start simple and also ask for an explanation. There’s sometimes another way to phrase these too:

  • Adding “why or why not?”
  • eg: “Did you enjoy being a voice actor on the Simpsons? Why or why not?“
  • you could also ask that question this way: “What were some things you liked and disliked about being a voice actor on The Simpsons?”
  • another example: “Do you think that there is life on other planets? Why or why not?“

There are also questions that are challenges. These are harder to pull off. They still should be real questions, that it is actually possible to answer in a substantive way.

  • For instance “Isn’t it true that you’re an ableist and only care about yourself?” isn’t a good question because there’s no good way to answer it.
  • Asking that way makes you look like a jerk, even if you’re completely right in your assessment
  • It’s much more effective to challenge them on something specific, and to ask a question that it is possible to answer
  • (This can sometimes force them to consider the issue, or to reveal publicly that they’re getting it wrong.)
  • Example of a better question: “Why doesn’t the board of your Disability Organization About Disability have any openly disabled members?”
  • Or, you can push harder and say something like: “There are no openly disabled members on your board. What are you doing to address this problem?“
  • How far it’s useful to push depends a lot on context.
  • (The rule of only asking one clear question at a time is particularly important with challenges. If you ask a complicated or ambiguous challenge question, it makes it easy for them to evade it.)

If possible, keep your question short:

  • Most people don’t like to pay attention to long complicated questions
  • If your question is short and easy to understand quickly, you’re likely to get a better answer
  • Short questions are easier to understand
  • They’re also harder to evade
  • If your question is 1-3 sentences long, you will probably get a better answer than if it is substantially longer.

Think about your question before you start talking:

  • You will probably have to wait your turn to ask
  • While you’re waiting to be called on, it’s worth planning what you want to say and how you want to say it
  • If you wait and don’t figure out what you’re going to say until you start talking, it will probably be more verbose and less clear
  • If you can, it’s worth planning
  • (For some people, writing the question down first helps)

None of these things are absolute rules, but all of them are potentially helpful. If you can’t communicate this way, you still have the right to ask questions. These are suggestions, not rules.

Short version: If you’re at a panel discussion and want the panelists to give interesting answers to your question, there are things that make that more likely. Scroll up for some general principles and some scripts.

It’s ok to do things you suck at

If you give yourself permission to suck at things, you open up the possibility of learning new skills and becoming good at stuff you’re not naturally good at.

The only way to get good at most things is to start out doing them badly and gradually learn the skills needed to do them well.

You don’t have to know what you’re doing (beyond basic stuff like safety). You don’t have to be talented. You don’t have to be aesthetically pleasing. You can do things and flat out suck at them over and over and have that end up being a good thing.

If you try something new, and find that you suck at it at first, that doesn’t always mean you’re doing something wrong. Usually, it means that you’re doing something *hard*.

Being willing to do hard things is good. Being willing to suck at things until you get enough practice to do them well is how you get to be good at stuff.

You don’t have to know what you’re doing (beyond basic stuff like safety). You don’t have to be talented. You don’t have to be aesthetically pleasing.

Short version: It’s ok to do stuff you suck at. Sucking at something is often a necessary step in learning to do it well.

When others struggle to find words

A reader asked:

When other people forget the word they’re trying to say I often just say the word for them. Normally they seem happy to have gotten the word they couldn’t remember but I notice that I seem to be the only one I notice doing this (note: I’m autistic). I was just wondering, is this rude? Is it something I need to stop doing?

realsocialskills said:

Saying the word you think someone forgot is a form of interrupting. It’s usually rude, but not always. (That’s true of interrupting in general. The formal rule is “don’t interrupt people”, but there are a zillion exceptions, including many situations in which it’s rude not to interrupt.)

It’s basically rude to suggest words unless they wanted you to do it. People’s preferences on this vary a lot. For instance:

Some people need time and space to find words when they’re looking for words. Suggesting the word for them can actually make it harder for them to figure out what they wanted to say, especially if you get the word wrong.

Some people get stuck and like other people to help unstick them by suggesting words.

These are just two examples; there are a lot of other reasons people can prefer different approaches.

It’s not always obvious. The best way to find out about someone’s preferences is to ask, preferably when they’re not actively struggling for words, eg: “I’ve noticed that you sometimes have trouble finding words. Would you like me to suggest words when you get stuck, or would you rather wait for you to finish your sentence?“

It’s probably better to err on the side of not suggesting words, because people who are bothered by it are really bothered by it. But for people who find it helpful, it can be a good thing to do. If you can’t tell, it’s good to ask.

A further thing: pretty much nobody likes to be told what they are saying; if you’re suggesting a word, it should be a question, not an answer (you are not a mindreader and sometimes you’re going to get the word wrong).

Eg, if you say it like this, it will probably aggravate the person you’re trying to help:

  • Them: You know? The thing? The sit thing? With the surface?
  • You: You’re talking about a chair.

If you say it like this, it’s more likely to be helpful:

  • Them: You know? The thing? The sit thing? With the surface?
  • You: A chair?

Short version: Most people who are struggling to find words don’t like to be interrupted with a suggested word. Some people find it helpful. It’s usually best to err on the side of not suggesting words. When in doubt, ask.

‘but’ vs ‘and’

I’ve been taught this trick for giving feedback by a couple of people recently, and I’ve been finding it really helpful:

Using “and” instead of “but” can make it much easier to give useable feedback. It also sometimes works in conflict situations:

Eg:

  • “I really liked your message, but I thought it was too long to follow.“
  • “I really liked your message, and I thought it would have been easier to follow if it was shorter”.

or:

  • “I’m sorry that I yelled, but what I was saying was important. Your dog has to stay out of my yard. He’s been digging up my flowers.”
  • “I’m sorry that I yelled, and what I was saying was important. Your dog has to stay out of my yard. He’s been digging up my flowers”.

If you say but, it’s often heard as “I know I’m supposed to say something nice, but I don’t really want to.” If you say and, it’s more often heard as “I believe both of these things.“

It’s worth considering erring on the side of saying and rather than but when you sincerely believe both things. It often makes a big difference, both in how you think about what you’re saying, and in how it’s perceived by other people.

Look past the wheelchair and see the disability

Wheelchairs don’t have disabilities; people do. Unfortunately, many people intuitively think of disability as residing in wheelchairs and other adaptive equipment, and forget that it’s a basic fact about a person and that person’s body.

This can cause a lot of problems and misunderstandings.

For example: Jane uses a wheelchair most of the time, but sometimes walks when she needs to go somewhere inaccessible. That’s nastily exhausting, bad for her health, and comes with a significant risk of injury. Sometimes she does it anyway because it’s important for her to go to an event, or take a class, or do something else in an inaccessible place.

Jane’s sister Sarah is getting married, and has chosen an inaccessible location. Jane decides that it’s important enough to her to go to that wedding that she’s willing to go even though she won’t be able to bring her wheelchair.

All of Jane’s relatives assume that this means that she is ~getting better~, and doesn’t need mobility equipment anymore, even though her disability is not an illness and is not something that can be changed. What it actually means is that she’s having a very difficult and possibly dangerous day because her sister made an inconsiderate choice.

Jane’s wheelchair doesn’t have a disability; Jane does. And when Jane isn’t using her wheelchair, it doesn’t mean that she’s somehow less disabled; it means that her needs aren’t being met.

Or, another example: Bill has a chronic illness. He usually needs his wheelchair to get through the day, but sometimes he’s feeling particularly energetic and decides to walk somewhere. His friend Joe sees him and says “It’s so nice to see that you’re getting better!”. This bothers Bill, because he’s not getting better, and he’s not going to get better, he’s just having a day where taking a walk is an option. Bill would like people in his life who don’t understand his reality to stop making inappropriately intimate comments about his health.

There are many other examples, for just about every disability category. People make a lot of unwarranted and intrusive assumptions about someone’s disability and health based on what adaptive equipment they are or aren’t using on a particular day. Those assumptions can cause serious problems for people, and it’s important to stop making them.

Mobility equipment doesn’t have disabilities. People do.

Doing what you must and feeling like you’re faking

Content note: This post is about the broad (inaccurate) perception that people with disabilities are faking, and ways that forces some people with disabilities to partially misrepresent the exact nature of their disability. Proceed with caution. 

Some people without disabilities believe that there are massive numbers of people faking disability, and that they must be caught and stopped. People who believe this usually don’t know very much about what disability actually looks like. They tend to assume that anyone with a disability who has non-stereotypical abilities is faking their disability.

Real disability often doesn’t look like stereotypical disability. For instance, many wheelchair users can walk, and many people who have service dogs can read, and many people have different abilities on different days depending on their energy and pain levels. This doesn’t mean that they are faking. It just means that their combination of abilities and disabilities don’t look like media tropes, because they are real people.

People with non-stereotypical disabilities can be in a very difficult place when dealing with people who think this way. It’s a pervasive problem, and people with a misplaced dedication to rooting out fakers often have a lot of destructive power over people who need disability-related support.

Being thought of as faking can mean that you lose accommodations. It can mean that you lose services that you need in order to survive. It can mean you get harassed. It can mean people are violent.

Sometimes, people with disabilities have no realistic option other than to allow people to believe that they fit these stereotypes:

Eg:

  • On a college campus, every dorm except one is completely inaccessible.
  • The main entrance to the partially accessible dorm has stairs
  • There is an accessible entrance for employees and residents with disabilities, but it’s always locked
  • In order to get a key, you have to convince Fred the building manager that you need one
  • Fred is very suspicious of disability claims, and is constantly trying to catch people faking disability
  • Fred believes that anyone using a wheelchair who can walk, stand, or even move their legs, is a faker who needs to be called out and prevented from using accessibility resources (if you don’t know why he’s wrong, read this post)
  • Wheelchair users who need access to that building are careful to give Fred the impression that they are completely unable to walk or stand. They never stand in front of him, or in a place where he might turn up unexpected. They carefully avoid referencing their ability to stand to anyone who might repeat it to Fred.
  • They may even have to outright lie about this in order to prevent Fred from taking away their access to the only door they can use. (eg: If Fred asks them directly, or rants about fakers, or makes them fill out an intrusive form).

More generally:

  • Many, many people have strong attachments to stereotypical ideas about how disability works
  • They tend to think that people who don’t fit those stereotypes are faking disability
  • Most people with disabilities don’t fit disability stereotypes particularly well
  • It’s often dangerous for people with disabilities to be perceived as faking it
  • That’s a hard situation, because:
  • There may be times when you know that if you describe your abilities and access needs completely accurately, people are likely to think that you are faking
  • But if you somewhat misrepresent your abilities in a way that fits the stereotype, then they’ll believe you about your real access needs
  • Which can put you into the awkward position of having to choose between representing the nature of your disability fully accurately and being thought of as faking, or allowing people to inaccurately believe that you fit a stereotype and being believed
  • That’s degrading on a level it’s hard to understand if you haven’t experienced it
  • It’s also a common experience among people with disabilities, and if that’s what you’re dealing with, it’s not your fault.

Some additional examples:

  • Some people who can write a little bit by hand are careful not to write in front of most people, so they they will not be assumed to be capable of the kind of writing that is completely impossible for them
  • Some people who are not autistic but have similar support needs due to less well-known conditions end up with an inaccurate autism diagnosis in order to gain access to services that they absolutely need in order to access education or to survive
  • Some people with both physical and cognitive disabilities allow others to assume that they are more physically disabled than they really are as a way of getting their cognitive access needs met without having to face certain kinds of cognitive ableism
  • Some people who can speak only a few words are careful to avoid speaking in front of most people, lest someone decide to take away the communication system they need to communicate things that can’t be expressed in their few spoken words

If you have a disability and you are not free to describe it fully accurately lest you lose accommodations, lose services, or face frightening harassment, know that you are not alone. A lot of people with disabilities experience this at some point or other. It’s humiliating and corrosive to go through, and it may make you feel like you are faking or that your needs are imaginary. It helps to remember that this is not actually your fault.

You are not faking, and your needs matter. You are a real person with a real disability doing the best you can in a hostile world. You are not alone, and it helps to remember that. There are other people with disabilities who are there, or who have been there, who understand that struggle.

Short version: People with disabilities are often forced to pretend to meet stereotypes in order to get their very real needs met. This is humiliating and degrading. If you’re dealing with that, it’s not your fault and you’re not alone.

7 second rule

If you’re leading a group discussion or teaching a class, it’s important to pause for questions periodically. Part of pausing for questions is giving people time to react before moving on. People can’t respond instantaneously; they need time to react. If you don’t give them time to react, it can give you an inaccurate impression of their level of interest or engagement.

Eg:

  • Leader: Does anyone have any questions?
  • Group: …
  • Leader: Ok, moving on. 

When this happens, it’s not usually because no students had questions. It’s usually because the teacher didn’t give them enough time to process before moving on. It doesn’t actually take a huge amount of time, but there has to be some. A good amount of time to wait is seven seconds. If you wait seven seconds before moving on, someone will usually say something.

Seven seconds can feel like a really long time when you are teaching. It can feel like an awkward empty space that, as the teacher, you’re supposed to be filling. That can lead to interactions like this:

  • Leader: I just said a controversial thing. What do you think of the thing?
  • Group: …
  • Leader (immediately):… none of you have opinions about this?
  • Group: …
  • Leader: (immediately):… Really? No one?

When this happens, it’s usually not that no one had anything to say. It’s usually that the leader or teacher kept interrupting them while they were trying to get words together and respond. It’s easy to inadvertently do this, because it feels like you’re supposed to be doing something to get your students to respond. But, often, the best thing you can do to get them to respond is to wait and give them space to do it in.

It helps to remember that as the teacher or leader, you shouldn’t actually be taking up all of the space. You should also be offering your students some space and listening to them, and allowing them to ask you questions so they can understand. It’s ok if that space isn’t immediately filled; no one can react instantaneously. 

Short version: If you wait seven seconds every time you pause for questions/responses, it gives people time to process, and some people will become capable of participating who weren’t before.