ableism – Page 5 – Real Social Skills

Look past the wheelchair and see the disability

February 22, 2015June 21, 2021 Real Social Skills

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

February 20, 2015June 10, 2021 Real Social Skills

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.

Disability doesn’t make it ok to be creepy

February 5, 2015June 21, 2021 Real Social Skills

Content warning: This post is about sexual creepiness, sexual assault, and using disability as an excuse to violate boundaries. Proceed with caution.

A reader asked:

How do you call out a disabled person who is saying they should get to do creepy or mean things because of their disability, without being ableist yourself? I know a guy in a wheelchair who will grope and touch women when they sit down next to him, and he has done this to me. And he’ll say things like, “Come on, I’m in a wheelchair.” if you try to move or act uncomfortable. And he says because most women aren’t nice to him, he should get to know a female’s touch.

realsocialskills said:

This guy is using other people’s desire to be good people as a weapon to get away with groping women. That is not something you need to have any tolerance for whatsoever. He’s doing something awful and he knows exactly what he’s doing. He’s violating people and then manipulating them into feeling like bad people for objecting. That’s a horrible thing to do.

And it seems like it’s working, given that you’re concerned that you might be wrong to tell him to stop, or that you might have to be very careful about how you do it.

This dude is groping people and telling them off for objecting. There are absolutely no circumstances under which that is an ok thing to do, and you don’t owe him a pass on it just because he’s marginalized by ableism. That’s the most important thing about this situation. It’s absolutely ok and important to insist that he knock it off.

It’s not ok to grope people. Being lonely doesn’t make it ok to grope people. Being marginalized and desexualized doesn’t make it ok to grope people. People with disabilities are often seen as non-adult and therefore nonsexual, and that’s a horrible thing to experience. That doesn’t mean that others owe them sex, and it doesn’t give them the right to grope people. The only thing that makes it ok to touch another person in a sexual way is consent.

It’s ok to insist that this dude stop groping people even if you have some ableist attitudes towards him (You probably do. Most people, including people with disabilities, have some ableist attitudes, and most people are more ableist towards people they have good reason to dislike.) You don’t have to wait to be perfectly free of all bigotry before you’re allowed to decide who you do and don’t want touching you in a sexual way.

If you want to tell this dude to stop groping people, I think the best way is to just completely refuse to engage with any of the excuses he’s making. The overriding issue here is that he’s violating people in a sexual way. It’s not ok for him to do that, and it’s not ok for him to tell people they’re wronging him by objecting. It’s better not to let him change the subject to ableism when you’re telling him to stop groping people.

I’m sorry you’re having to face this situation. He shouldn’t be acting this way.

Pride in disabled accomplishments vs inspiration porn

January 31, 2015June 10, 2021 Real Social Skills

I think sometimes people with disabilities get caught between a rock and a hard place regarding pride and inspiration porn.

When people without disabilities choose to do hard things, they usually feel proud of accomplishing them. And they usually have people in their lives who notice the hard things, and who respect them for doing them. Doing hard things is something that people generally respect.

People with disabilities are often totally excluded from that kind of respect, when the thing that’s hard is hard for reasons related to disability.

Sometimes the difficulty of being disabled is acknowledged, or at least referred to, but in a way that’s utterly devoid of respect. That can take the form of condescending and degrading praise, eg:

“Wow, you are a person with a disability in public! You’re not even in your house! You are doing a thing! That is so inspiring!”, or:
“Hello, fellow parents at the conference. This is my son. I never gave up on him, so he’s going to play the guitar badly for us. See what our special kids can accomplish if we believe in them?!”, or:
“Wow, you sure are good at driving that wheelchair that you have been using every day for the past ten years.“
“Wow, really, you’re autistic? I never would have known! I don’t see you that way at all. You even talk to people and everything.”

And then there’s the other side, where everyone just completely ignores difficult things that people with disabilities accomplish when the difficulty was disability-related, eg:

Learning, through considerable focused effort, to speak in a way that others can understand (nondisabled people are allowed to be proud of their communication skills)
Preferring to walk and putting in a lot of effort to retain the ability (nondisabled people are allowed to be proud of their ability to run)
Bearing hate and breaking into a profession that’s hostile to people with disabilities
Learning to read even though it’s cognitively difficult (nondisabled people are allowed to be proud of learning to understand something difficult)
Learning how to recognize facial expressions
Figuring out a way to do calligraphy even though your motor skills are awful (nondisabled people are allowed to be proud of mastering a difficult artistic skill)
Explaining your reality to someone who you need to understand it

When people don’t acknowledge this kind of thing, it’s degrading in a different way:

Doing things that are easy for most people can, genuinely, be a major accomplishment for us
Our struggles aren’t acknowledged very much, and almost never in respectful terms
And our disability-related accomplishments aren’t often celebrated, except when they’re being used as a way to shame nondisabled people into being less lazy or something
Having the difficult things we do go completely unacknowledged is also degrading
Disability-related accomplishments matter just as much as accomplishments not related to disability

Or, in short, these things are very different:

Being exhibited by someone else as you play the guitar badly, while that person implies the the audience that this is the height of what you will ever accomplish
Having messed up hands, deciding to try to learn to play guitar anyway, getting to the point where you can coordinate well enough to play a few songs badly, and being proud that you’ve come so far

It’s ok to be proud of doing things that are hard for you, even if they’re easy for most people. It’s not a failure of acceptance. It’s not the same as pushing yourself to be normal at all costs. Your accomplishments deserve respect.

“You’re just looking for a quick fix”

January 30, 2015June 10, 2021 Real Social Skills

If you use medication to make your life easier or better in any way, some people might object, and say “you’re just looking for a quick fix!”.

This is a mean and unhelpful thing to say.

Medication isn’t the right answer for everyone who has cognitive or mental health problems or pain or other reasons people take medication, but it can be game changing for some people. If you try medication and find that it makes your life easier, that’s a good thing, and it’s ok to be happy about it.

It’s ok to want your life to be easier. It’s ok if it turns out that there’s something that works quickly that makes things better. Using an effective strategy to make your life better isn’t being lazy; it’s being efficient.

Electricity is an access issue (short version)

January 15, 2015June 21, 2021 Real Social Skills

A lot of people with disabilities need reliable access to electricity. If you don’t make electricity continuously available at your event, your event is not accessible.

Some people need electricity in order to breathe. Some people need electricity to be able to move across a room. Some people need electricity for life sustaining medical treatments. Some people need electricity to communicate.

All of these people, and anyone else with an access need for electricity, should be welcome at your event. They can be, if you make proper plans and make sure that electricity will be reliably available.

(For further details, see this post.)

Electricity is an accessibility issue

January 13, 2015June 10, 2021 Real Social Skills

When you’re planning an event, conference, venue, retreat center, house of worship, community center, or similar, it’s important to keep in mind that many people need reliable access to electricity in order to be able to participate. A choice to build or use a venue without reliable electricity is a choice to exclude people with disabilities.

Access to electricity is always important, but it’s especially important for overnight events or multi-day conferences. Many people with disabilities absolutely depend on electricity to be able to participate in events.

Here are some people you’re excluding if you choose or build a venue without reliable electricity:

People who use electric wheelchairs or mobility scooters:

Power chairs do not have infinite battery power
They have large batteries that have to be charged overnight
Charging them takes a lot of power
Minimalist electricity isn’t enough. Having a generator available for a few hours in the evening will not make a conference without electricity accessible to people who need to charge large batteries
If people can’t charge their chairs at your event, then you’re excluding power chair users.

High-tech AAC (alternative and augmentative communication) users:

Not everyone can talk.
Some people who can talk can’t reliably use speech to communicate
Many people use high-tech speech-generating devices to communicate
(For example, some people use apps such as Speak For Yourself on an iPad, or a dedicated device such as a DynaVox)
High-tech AAC devices only work if they are charged
The batteries aren’t infinite. Devices need to be charged overnight and some may also need to be charged during the day.
If your venue doesn’t have reliable electricity, people who need to keep their communication devices charged can’t participate
A choice to hold an event in a venue without reliable electricity is a choice to exclude people with communication disabilities who use speech generating devices to communicate

People who use ventilators and other breathing equipment:

Everyone needs to breathe
Not everyone can breathe adequately on their own
Some people need ventilators, bipaps, or other breathing equipment
People who use breathing equipment also do things besides sit at home and breathe, like go to conferences or other events you might be planning
People need to breathe while they do things like go to your event, which means they probably need to be able to plug in their machines
Machines can run off of batteries, but no battery has infinite power. Reliable access to electricity is important. No one should have to worry about where their next breath is coming from because they can’t find an electrical outlet.
If your venue doesn’t have reliable electricity, people who need machines to breathe can’t safely participate in your events
If you choose to hold your event in a location without reliable electricity, you’re choosing to exclude people with disabilities who need breathing support

People who need powered medical equipment:

Some people with chronic conditions need to do regular nebulizer treatments in order to keep their lungs functioning
Some people who eat through feeding tubes need powered infusion pumps to eat safely
Some people need to sleep with a CPAP in order to breathe at night
Some people use powered dialysis systems at night
If your venue doesn’t have reliable electricity, people who need powered medical equipment can’t safely participate.
If you choose to hold your event in a location without reliable electricity, you’re choosing to exclude people with disabilities or chronic conditions who rely on powered medical equipment

Medication:

Some people rely on medication that needs to be refrigerated.
If you hold a conference in a venue with no electricity and no refrigeration, they can’t safely participate.
A choice to hold an event in a venue without electricity is a choice to exclude people who need medication which must be refrigerated.

Some specific considerations in making sure electricity is available:

There need to be available outlets in people’s rooms and in the public areas where events are happening
Make sure the outlets are available and in good working order
(A broken outlet will not charge someone’s wheelchair)
Neither will a two-prong outlet. Make sure three-prong outlets are available.
If the available outlets aren’t at the tables (or whatever other space) you’re using, make sure you have a three-prong extension cord that reaches them
An outlet on the other side of the room is better than nothing, but it’s still a barrier to full participation. Extension cords can often solve that problem.
(In any case, a long, three-pronged extension cord is a good thing to keep in your supply kit for events; there are a lot of situations in which they are useful)
If you can, arrange the room so that the outlets are near the tables you’ll be using (this is also helpful to people who need to charge computers and phones).

Short version: Electricity is an accessibility issue. Having an event (and especially a conference) in a venue without reliable electricity excludes people with disabilities whose adaptive equipment requires electrical power.

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.