disability – Page 8 – Real Social Skills

People with disabilities are not professional development objects

January 7, 2015June 10, 2021 Real Social Skills

Some people, often disability professionals, interact with disabled folks in creepy ways.

Here’s one way this plays out:

Person with a disability: I am going to bake a fancy cake. I am going to the fancy cake store to get ingredients. I hope they have the sugared roses in.
Disability professional who happens to be in the store: Oh wow, a real live disabled person with the exciting disability widget I’ve been reading about in the Journal of Professional Development In Supporting Widget Use!
Disability professional: Hey, you have an Exciting Widget. What kind of widget is it? Is it model 8A series 27? Do you have widget syndrome? I’ve heard that the New Widget is particularly good for people with widget syndrome. Has that been your experience?
Person with a disability: …

Other things of this nature:

“It’s so nice to see that you’re choosing to use the Exciting Widget and be independent.“
“Have you ever considered getting a dog instead of using the Exciting Widget?”
“Do you find that the Exciting Widget allows you to use a wider range of toilets?“
“Are you allowed to use the Exciting Widget at work?”
“Did you find the rehab difficult? I know it’s been hard for some of my clients.”

In effect, the disability professional is thinking something like this:

Being really fascinated with disability
Assuming that all people with disabilities are just as fascinated as they are, and:
That they are endlessly interested in talking about disability and equipment and therapy
Or that they’re living classroom models
And then treating them as though being visibly disabled in public constitutes permission to ask invasive personal questions and initiate detailed conversation about disability

It’s not ok because:

Decisions about adaptive equipment and mobility are intensely personal and private
It’s not ok to ask random strangers intimate questions about their bodies
Being disabled in public just means that someone is living their life
Being visibly disabled in public doesn’t mean someone is endlessly fascinated with disability, or that they’re remotely interested in discussing disability and equipment and therapy with you.
The world is not your classroom. It’s the world, and the people in it have agendas of their own. It’s not ok to treat them as objects for your professional development
People with disabilities should be able to live their lives without being asked inappropriately intimate questions by strangers

Some concrete examples:

People with disabilities are just living their lives. A person with a disability doesn’t owe it to anyone, including professionals, to participate in their disability fandom.

For instance:

Wheelchair users are using wheelchairs to get around. Their wheelchairs are not an invitation for you to participate in the wheelchair fandom and discuss wheelchairs, disability, treatments, or your professional development with them.
Blind people are not an opportunity to participate in the cane fandom, the O&M fandom, or to discuss your opinions about the relative merits of canes and dogs
All of those things require consent, and being disabled in public does not constitute consent.

And particularly if you are a professional:

It’s important to keep in mind that being a disability professional is a choice, and having a disability isn’t
And for professionals, equipment conversations are a form of talking shop; for most people with disabilities they are intimate and personal.
People with disabilities are not necessarily interested in using their personal lives as fodder for your shop talk
If you see someone with a disability in a public place, all you know is that they have a disability. That doesn’t imply anything about their interests or their willingness to answer invasive personal questions.
And more generally: as a professional, you have a responsibility to be rigorously ethical in the way you interact with people with disabilities
If you’re being invasive and asking inappropriately intimate questions of random disabled strangers in public, you’re probably doing a lot of even more inappropriate things with clients
People with disabilities who depend on you for services might not be in a good position to assert boundaries; it is your responsibility to avoid putting them in that position and rigorously respect boundaries on your own initiative
You can’t simply rely on your professional culture to teach you appropriate boundaries; there are too many professionals who don’t have this skill.
You have to actively seek out boundaries education on your own initiative
One professional who is really good at this is Dave Hingsburger. He wrote a good introduction called Power Tools. It explains a lot of practical things about power, disability, and boundaries in practical concrete ways.

Short version: People with disabilities are not education objects. Don’t ask people with disabilities invasive personal questions about their bodies or adaptive equipment choices. If you’re a disability professional who does this, it’s important to stop doing that and to learn more about boundaries.

Disability and risk

January 2, 2015June 10, 2021 Real Social Skills

As people with disabilities, we generally have to adopt a different attitude towards risk than nondisabled peers. Most of us have to take more risks than most other people, and that can be very confusing. Sometimes it can feel like being more reckless, when it’s actually just a consequence of having fewer options.

For instance:

Housing:

People with disabilities often have far fewer options for housing than people who aren’t disabled
Accessible housing is limited
(Eg: if you need a flat entrance, that excludes most apartments. If you need to live alone, that excludes most affordable apartments.)
People without disabilities are generally in a much better position to say no to things that seem sketchy or unreasonable.
When there are only three apartments in a city that you can both get into and afford, it’s much harder to say no to the roommate with a loud parrot who wakes you up every night
Or the landlord who wants an unreasonably large deposit, or who want to insist that you go to church with them as a condition of living there, or who obviously have no intention of keeping everything in working order
If things go bad, it can feel like it was your fault and that you should have known better than to get into this situation
Especially if most of your friends wouldn’t ever take that kind of a risk (which is likely to be the case if most of them aren’t disabled or poor)
It might not be your fault though
It might just be that you only had risky options, you had to choose from among them, and you were unlucky this time
That’s in the nature of only having high-risk options: sometimes bad things will happen. It’s not your fault if you’re in that situation.

Similar considerations apply to equipment, travel, employment, and any number of other things. Being disabled (and/or poor) often involves having to take much higher risks than most other people have to take. Sometimes, this will even involve taking life-threatening risks to do things like go to a conference. That doesn’t necessarily mean you’re reckless. It can just mean that you’re trying to live your life and that you have things to do that can’t be done completely safely.

Short version: People with disabilities often have to take more risks than people without disabilities. That isn’t a matter of recklessness; it’s a matter of necessity.

A way people with disabilities are often wrongly percieved as angry

December 29, 2014June 21, 2021 Real Social Skills

Sometimes disabled people are wrong perceived as angry or hostile when they move like disabled people. It works something like this:

The most efficient way to do things is often not the socially accepted way to do things
People with disabilities often have to do things in an efficient way to be able to do them
In order to be perceived as calm and polite, people are often expected to move in a slow, careful way without making sudden or loud motions
That’s easy for most people without disabilities, and can be difficult or impossible for people with disabilities
Sometimes people with disabilities don’t have the motor coordination or strength to move in expected ways. Sometimes pain or illness makes them too exhausted to have the energy to move in expected ways. Sometimes, they have to move efficiently to be able to move at all.
People with disabilities who have to move in loud, sudden, forceful, or jerky ways are often wrongfully perceived as expressing anger, frustration, or aggression.
When people make loud, jerky, or sudden motions, they tend to be perceived as rude, angry, or aggressive
People with disabilities don’t always have the coordination to make the movements in expected ways
Sometimes, they have to be efficient in order to do the thing.
This often gets perceived as angry when it isn’t
This can lead to people with disabilities who are just trying to live their lives being perceived as hostile and excluded
When a person with a disability is moving in a jerky, sudden, or loud way, it’s important to consider the possibility that it’s disability-related rather than angry

Some concrete examples:

Dropping things:

In most social contexts, it’s socially expected that people who need things to be on the ground put them there without making a sudden noise
This generally means using your arms to slowly lower the thing to the ground
People with disabilities often do not have the strength or motor coordination needed to lower things this way
Sometimes, people who can’t rely on muscles to lower things need to drop them and rely on gravity
(And some people have to rely on gravity some of the time, eg: when they’re tired, at the end of a long day, when they’re in a particularly draining environment, when they’ve already had to lift and drop the thing several times that day.)
Gravity only goes one speed, and dropped objects tend to make noise
Dropping a heavy object rather than lowering it slowly is usually perceived as a sign of anger (and for people without disabilities, it’s generally intended as one).
People with disabilities who drop things are often not intending it as an expression of anger.
Often, they drop things because they need them to be on the ground and have no other realistic way of getting them there.
If a person with a disability is dropping heavy things rather than lowering them, it’s important not to automatically assume that they are doing this out of a show of emotions
Consider seriously the possibility that they’re dropping things because they need to lower them, and due to disability are not able to do so in the socially expected way.

Another example: Plugging things in:

The socially expected way to plug things in is to slowly push the plug into the outlet using a steady pressure
That requires a particular kind of strength and muscle control
Some people with disabilities can’t do that
Some people with disabilities have to rely on momentum.
Relying on momentum involves one sudden forceful movement.
That can look like punching, and can be perceived as excessive force
Most people without disabilities only plug things in with that kind of force when they are angry or frustrated
People with disabilities often plug things in that way because it’s the only way they can do it
If a person with a disability uses a lot of force to plug things in, don’t assume it’s a display of emotion.
Consider seriously the possibility that they’re doing it that way because that’s how their body works

In general:

Some socially expected movements are complicated and difficult
Sometimes people with disabilities can’t do it in the polite way
Sometimes, we have to do it in a way that’s more efficient
That’s often perceived as rude, inconsiderate, or threatening, when it’s really just limited ability to move in expected ways
No amount of social skills training or knowledge of socially expected behavior will make it physically possible to move in all expected ways
This can result in people with disabilities being perceived as angry or displaying rage when all they’re doing is moving
It’s important not to automatically assume that people with disabilities who move oddly are doing it to display anger. It might just be that that’s the only reasonable way for them to do something.
If you understand this, you’ll be much more able to relate to people with disabilities and include people
(People with disabilities, like everyone else, sometimes display anger and frustration in physical ways. But they are routinely wrongly perceived as doing so. It is possible, and important, to learn to tell the difference).

Short version: People with disabilities are often perceived as displaying rage or aggression when they’re just moving. This is because socially expected ways of moving are often very inefficient in ways that aren’t too difficult for most nondisabled people, but can be difficult or impossible for people with disabilities. It’s important to learn to tell the difference between people with disabilities moving efficiently and people with disabilities displaying anger. Scroll up for details and examples.

Everyone gets blamed for their condition

December 7, 2014June 10, 2021 Real Social Skills

People with depression and other mental illnesses get told that they can get over it with diet, exercize, and positive thinking. They also get blamed for having it, and told that it’s their own fault. This is wrong.

It’s also a common experience of everyone with every condition there is. This is not unique to mental illness.

Everyone with a disability, illness, or other condition gets blamed for it. People with every condition get told that it’s their fault, that they caused it by eating wrong, sleeping wrong, thinking wrong, or not being sufficiently careful.

People with every condition get told that medical treatment is toxic and wrong, and that if they just stop believing big pharma, they’ll recover. Even people with cancer.

People with every condition get told that they’re causing their own problems by being too negative, and that they’d get better if they’d just think positively. Even people with spinal cord injuries.

People with every condition get told that they will be healed if they just have faith and pray hard enough. Even people whose condition is obviously genetic.

People with every condition get told that they’re imagining things. Even people with unmistakable visible physical conditions.

People with every condition face this kind of prejudice. It’s not unique to any group. We should stand together and acknowledge that we all face it, and that it’s wrong to do to anyone.

Short version: People with every condition get blamed for it and told that things like positive thinking and rejecting big pharma will make everything better. It isn’t unique to mental illness. It’s wrong to do to anyone.

Dwarfism awareness – thoughts on doing right by adult little people

November 14, 2014June 11, 2021 Real Social Skills

I wrote this post for Dwarfism Awareness Month (which was in October) in collaboration with a friend who is a little person. It wasn’t ready until now, so I am posting it now.

Here are some things worth knowing:

Adult little people are adults, but people often treat them like children. You might be doing this too, and it’s important to get over that. Many people strongly associate being a certain size with being a young child. It’s important to be aware that not everyone that size is actually a child, and to act to mitigate any reactions you might be having that lead you to see an adult little person as a young child.

For instance, at work:

If you’re in a professional setting and someone is wearing professional clothing and acting like a professional adult, they’re not ten years old.
If you keep viscerally responding as though they are a child, it’s important to realize that it’s not ok and get over it. Don’t express that reaction, and don’t try to justify it.
Treat them as an adult
Respect their professional competence
If they are above you in the hierarchy, do not treat them as junior
If they are at your level in the hierarchy, do not treat them as junior
If they are actually junior, do not treat them like a visiting child or a teenager getting work experience. Respect them as an adult professional.

Another example: bars:

If you are in a bar, and someone is wearing adult clothing, acting like an adult, and drinking beer, they are not ten years old
They are an adult drinking beer in a bar
This is not a problem. This is something that many adults choose to do.
Do not look around for a caregiver. Adults do not have to bring minders to bars.
Do not ask them if they are ok unless you have an actual reason to think they might not be. Being a little person in a bar is not cause for concern in itself
If they are flirting with someone, this is not cause for concern either
Many adults flirt with people in bars. This is a thing that people do.
(Also, do not make jokes about tossing them, ask to toss them, or in any other way treat them as a toy. Adults have the right to drink beer in bars without being treated as a novelty attraction.)

And when you’re setting up an environment, remember that some adults are less than 4’10” and some are much shorter than that. Adult little people need access to anything that other adults need access to.

More specifically:

Adult little people need to be able to get through doors:

If you use a latch high on the door to prevent children from entering or exiting, you’re also making it impossible for adults of the same height to enter or exist
Latches need to be in places that adult little people can reach
Adults with disabilities should not be locked in like little children
If for some reason this kind of safety system is unavoidable, there needs to be an alternative way in and out that is reliably available
And you need to make it clear what that is

Keep this in mind when you put things on shelves:

If you’re putting things on shelves that a four foot tall person could not reach, you need an alternative way of reaching the thing
Or to put the thing in a lower place.
Keep in mind that if you put something on a high shelf in order to prevent children from reaching it, you’re also preventing adult little people from reaching it
Consider alternatives such as using child locks or supervising children more closely
(Or reconsidering whether the thing actually needs to be restricted. Eg: It might not actually be so terrible if your 7 year old students can reach the copier paper. You might not actually need an adults-only candy jar (and if you do, it’s not so nice to keep it where kids can see it anyway.))
If putting things on high shelves for safety reasons is truly unavoidable, make sure that there is an alternative way for adult little people to access them *and that you make it known what that way is*.

More generally:

Do not simplify your language the way you might when talking to a young child.
Do not assume that an adult little person is unemployed or only employed in a sheltered workshop or in jobs that can be done by children and teenagers.
Do treat adult little people as the age they actually are. (Eg: if they are elderly, don’t treat them as though they’re 20).
Do not ask invasive medical questions.

Short version: Adult little people are adults. Since many of them are the same height as young children, a lot of people treat them like children. Don’t do that. Also, make sure that you’re configuring things so that short adults can do the things that adults need to do.

When teachers refuse to accommodate your disability

November 13, 2014June 21, 2021 Real Social Skills

A reader asked:

What to do if teachers refuse to give you the accommodation? I couldn’t ever finish my work because they would refuse to write down things ect

realsocialskills said:

That’s a hard problem.

In my experience, you usually can’t make them write down assignments if they’re not doing it willingly (even with a letter). Sometimes you can, if you’re sufficiently insistent.

I’ve had surprisingly good results with reminding a teacher politely and discretely the first time, reminding them in front of other students the second time, and insisting more bluntly that it’s not ok for them to neglect to do this the third time. I’ve also had this blow up in my face. Your milage may vary. It’s not something I’d wholeheartedly recommend, but it does work sometimes.

Also, if the problem is that they don’t remember (or can’t be bothered to remember), sometimes reminding them by email works. Eg, by sending an email after every class asking them what the assignment is.

Another thing that can help is getting support from other students rather than the teacher. For instance, getting the assignment from a peer who is able to write it down. Or getting other students to also ask in the moment for it to be written down so it doesn’t have to come just from you all the time. (That helps me both in terms of getting what I need, and in not feeling like I’m alone and unreasonably demanding.)

If you are in college, another thing you can do is change classes. If a teacher is not treating you well and is making it impossible to do the work, treating that as a red flag and changing to a different class can make things a lot better. In college, there is often a lot more flexibility to work with people who are willing to accommodate you, and it’s important to learn how to take advantage of that flexibility.

Negotiating accommodations without a diagnosis

November 11, 2014June 21, 2021 Real Social Skills

A reader asked:

How do you ask for accomendations when you don’t have a go-to reason to explain why you need it? I don’t know if I’m disabled (I find info about disablities completely inaccessible to me, though i’ve wondered from seeing people talk about things i’ve also experienced) but I do know I can’t learn in certain ways, or process information that’s presented in certain ways, and that I’m prone to sensory overload. people act like i’m being overdemanding when I bring it up. am i? if not, what do I do?

realsocialskills said:

I’ve been there, a lot. I was only diagnosed after college, even though I’ve always been disabled. I was just as impaired before diagnosis; being without a label didn’t magically create abilities. So I’ve spent a lot of time negotiating accommodations informally.

I’ve found that what works best is to give a very simple version of the problem, and to ask for something specific. This can make accommodating you seem like a straightforward thing to do.

For instance: “This is hard for me to read. Is there an electronic copy?” works much better than “I’m autistic and I have visual tracking issues and executive dysfunction and I need a different format.“

Or: “Noisy College Hall is big and crowded. I never understand anything there. Can we have class in the usual room instead of moving?”

Or: “I don’t understand the assignment when it’s said verbally. Can you email me the details?”

Short version: You don’t have to go into great diagnostic detail when you’re negotiating with a teacher directly. You can start by describing the problem and a solution you think would work. This doesn’t always work, but it’s the most effective approach I know of for this situation.

Dealing with confusion in a costume store

October 24, 2014June 21, 2021 Real Social Skills

Costume stores can be really overwhelming and difficult for some people. Here are some reasons, and some things that can help.

Sensory overload:

The most obvious problem is sensory overload
Costume stores tend to be loud and have a lot of strange sounds
Sometimes costume stores have spooky music or scream tracks, which can be scary as well as physically unpleasant
They also usually have bad lighting and often have strobe lights
Costume stores also usually crowded with loud people
They also might smell weird, especially if there are a lot of masks and makeup

Things that can help with sensory overload in a costume store:

Go at an unpopular time of day so it won’t be crowded
(And if the lights are a big problem, going during the day might be better than going at night)
Carry a stim toy to help manage overload
If you get overloaded and disoriented, holding onto something solid like a shelf for a few seconds can help to reorient yourself
Wear headphones or earbuds to block out the sounds or make them more tolerable
You might need to take a lot of breaks to be able to tolerate the store long enough to successfully buy something. That’s ok
If you’re helping someone else get a costume, it’s worth saying explicitly that it’s ok for them to take breaks if they need to
If you think they might need a break, it can be good to say that they look overwhelmed and ask if they want to go outside for a minute (but also take no for an answer. Sometimes we’re overloaded *and* want to keep going)

Unfamiliarity

Costume stores are temporary, and they change from year to year
So you aren’t familiar with the layout, which can be disorienting if you depend on memorization to navigate stores
Also, most people don’t buy costumes very often
(and aren’t necessarily familiar with what is sold in a costume store, even they buy costumes every year)
This can be disorienting if you rely heavily on routine to navigate stores and make purchasing decisions efficiently

Things that can help with unfamiliarity:

Think beforehand about what’s available in a costume store (eg: they usually have several different kinds of costumes in bags. They also have masks and wigs and hats. They also have facepaint and accessories.)
If you’re helping someone else, talk to them about the different kinds of things that costume stores have before you go
Sometimes you can look online to find the layout of the store
It might help to walk through the store once or twice together just to see what is there, without trying to make decisions right away
(Orienting is hard. Making unfamiliar decisions is hard. Doing both at once can be *really* hard).
If you’re planning to help someone else (especially if it’s a child) it can help to visit the costume store first yourself so that you know what is in the store and where the various things are
(It’s easier to help someone else orient if you are already oriented)
You can look online to see which costumes are likely to be available this year
(You can also buy costumes online, but that runs the risk of ending up with something that’s not tolerable to wear.)
It might be better to buy costumes in a familiar store such as Target rather than an unfamiliar costume store. (That can also help with sensory overload since ordinary stores are less likely to have strobe lights, scream tracks, and extreme crowding)

Difficulty narrowing things down

There are a lot of options for costumes. It can be difficult to narrow down options
It can be especially difficult to narrow things down if you’re not sure what you want, but you know that you don’t like most of what you’re seeing
Or if you are having trouble processing what you’re seeing because of unfamiliarity, overload, or disorientation.

Some things that help with narrowing down options for someone else (I don’t really know any effective way to do this for yourself; there probably is one but I don’t know it):

An example of narrowing things down using categories:

You: Do you want to dress as a person or a thing?
Them: A person
You: A TV/movie character, a job, or something else?
Them: TV character
You: A superhero, or something else?
Them: Batman

Another example:

You: Do you want to look at the bag costumes, the makeup, or something else?
Them: Makeup
(then you walk together to the accessories area and they still look confused)
You: Do you want help narrowing it down, or do you just want to think about it?
Them: Think about it.
Them: I want cat makeup.
You: Do you also want a hat?
Them: No, a tail.

General advice for helping other people:

Don’t panic. It might be hard for someone to pick a costume no matter what you do
Helping means that you support them in ways that they welcome and find helpful
That doesn’t necessarily mean that buying a costume will be easy or comfortable for them
Things can be ok even if they’re hard or uncomfortable
If they don’t want to buy a costume in a costume store, that’s ok. If they want to do it even though it’s hard, that’s also ok.

It’s also possible to wear a costume without having to go to a costume store. Some other possibilities might be easier for some people.

Sometimes treating people with disabilities well means accepting that they are uncomfortable

October 7, 2014June 11, 2021 Real Social Skills

A reader asked:

I run a club for transgender students at my university. One of the newer members disclosed to us that she has asperger’s. Her sensory threshold seems to be extremely low and she seems to get overwhelmed in meetings often. After a meeting, I tried to pull her aside to ask her if there’s any way I could accommodate her better, but she got flustered. I don’t think she knew quite how to phrase what she needed to say in the moment, but I want to make the club more accessible for her. I’ve already spoken with the faculty adviser so we could move to a bigger room with more space. I also want to make sure this member of our club is getting her needs met, but I don’t want to force her out of her shell or put her on the spot while I try to meet her halfway. I’m having a hard time. Do you have any advice for me?

realsocialskills said:

I think the most important thing is not to put pressure on her to talk to you about her disability or access needs.

Sometimes people with disabilities choose to do things that are hard for us. Sometimes being overloaded is the price we pay for participation. It can actually be harder when people get upset about this and see overload as a problem they need to solve. Sometimes that’s just the way things are. Sometimes there’s no immediate solution, and sometimes it’s not the problem we want to work on.

Disability is personal. Coping mechanisms and disability-related choices are deeply personal. Some people with disabilities are fairly open about their specific issues and choices; for others, that’s a topic reserved for close friends. It’s ok if she doesn’t want to have that conversation with you even though she’s often physically uncomfortable or overloaded in the group. It doesn’t necessarily mean that you’re doing something wrong or that she’s doing something wrong. Sometimes it just means that some things are hard but worth doing anyway.

I’d say back off trying to get her to disclose more things about her needs, and follow her lead.

The one unilateral access thing I’d advise is that I think it’s important to make sure that she (and other group members) have the option of contacting you by email. If she’s getting too overwhelmed in the moment to tell you things she wants you to know, being able to email you might be really helpful. Don’t make a big deal about it, though, and don’t pressure her to email you about things. Just make email available as an option.

Good luck to both of you.

Short version: When you’re running a group and people with disabilities seem to be overwhelmed, don’t pressure them to talk about their disability or their access needs. Offer, but don’t pressure. Do make your email address available to group members. This makes it easier for them to tell you things that are hard to say in the moment.