Being seen as “manipulative”

A reader asked:

Hey! I was wondering what you think about adults thinking of neuroatypical kids as “manipulative,” “charming,” etc. surely not everyone who says that is wrong, but it can’t be a coincidence that it’s usually said about neuroatypical kids?

realsocialskills said:

I think that people jump to that conclusion really quickly with disabled kids. “Manipulative” can kind of become a catch-all category for ways to delegitimize a kid’s interests, opinions, and self-advocacy.

Manipulative often translates as meaning things like:

  • “She resists doing what I tell her to do, and tries to distract me so I’ll let her do something else”
  • (without reference to what it is they’re telling her to do, why she doesn’t want to do it, and what she does want to do)
  • (Sometimes this means that she is 12 years old, and she’s resisting doing a preschool curriculum worksheet for the zillionth time)

Or this:

  • “He keeps trying to say things I don’t want to hear, and to convince me that what he’s saying is important even though I keep telling him it isn’t.”
  • (Without reference to what he’s saying, why it matters to him, or why it’s so unreasonable for them to listen to him about it)
  • (Sometimes this means that he’s in pain, and trying hard to tell them and get it to stop, but they don’t believe him or don’t care if he’s hurting.)

Or this:

  • “Other people sometimes believe her about things when I tell them she’s lying”, or
  • “Other people ask for her side of the story even after I’ve told them mine.”
  • (And expecting you to believe the adult automatically that it’s unreasonable to ever believe anything the kid says)
  • (Sometimes this means that they’re hitting her when no one who cares is looking, and they’re afraid that she might eventually convince someone with power that they’re doing something wrong.)

Charming can also mean “other people like this person more than I do, and more than I think they deserve”.

That said, being manipulative in a bad way is a real thing, and people with disabilities are just as capable of being manipulative as anyone else is.

Being manipulative in the bad sense involves doing things like:

  • Having highly developed skill at getting other people to like them and want their approval
  • Using that skill to ride roughshod over people’s boundaries
  • And/or get them to do things that they don’t want to do or shouldn’t do
  • Convincing people they want to manipulate that they are friends, and not actually reciprocating friendship in a meaningful way

Sometimes people with disabilities are manipulative. More often, they are manipulated. (For instance, adults often have nondisabled kids volunteer to pretend to be the friends of disabled kids. This usually results in the disabled kids being manipulated in really degrading ways and misled about what friendship is.)

Short version: Being manipulative is a real thing, but disabled kids are accused of it far more often than they are guilty of it. When a disabled kid is called manipulative, it often means that someone is objecting to their entirely justified attempts to get control over their life. (Which would be seen as normal and acceptable in a nondisabled person their age.)

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.

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.

Disability doesn’t make it ok to be creepy

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.

Illegal doesn’t mean uncommon

So, sometimes when I talk about disability or racial or sexist or religious discrimination, people will be like “but isn’t that illegal?!”.

If you’re inclined to react that way, consider this list of things that are also illegal in the United States:

  • downloading copyrighted movies without paying
  • uploading someone else’s copyrighted content to YouTube
  • Scanning a whole book and putting it on Blackboard for your students to download 
  • smoking marijuana
  • shoplifting

You may have done one of these things in the past week, and you almost certainly know someone who did at least one of those things within the past week.

Illegal discrimination is like that too. It is against the law, but people don’t always follow the law. And, while serious consequences are sometimes imposed, a lot of people get away with breaking those laws without facing any serious penalty.

People who are discriminated against know this. You should keep that in mind when you talk to them about discrimination and the law.

 

Pride in disabled accomplishments vs inspiration porn

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”

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)

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

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.