social skills nondisabled people need to learn

Some inclusion requires ongoing effort

Inclusion means a lot of different things. Sometimes inclusion can be passive, sometimes it needs setup, and sometimes it needs ongoing effort and/or expense.

Sometimes inclusion is passive. In that sense, it’s the opposite of active exclusion.

Some examples of passive inclusion:

  • Meeting in a building that happens to be accessible.
  • Not harassing disabled people with intrusive unwanted “help”
  • Seeing a conspicuously disabled adult alone in a public space without assuming it’s somehow an emergency or that they’ve escaped from needed supervision. (And therefore not bothering them.)
  • Raising no objection when people bring service dogs into a store or some other place
  • Not having an admissions policy that prohibits people with certain disabilities from enrolling in a school

Sometimes to get to passive inclusion, you have to spend some time changing one thing or setting it up. After the temporary period of active change, the inclusion becomes passive.

Some examples of inclusion that requires setup, but may not require ongoing active effort:

  • Building a wheelchair ramp
  • (Or renovating an unsafe ramp and bringing it up to code)
  • Hiring an architect knowledgable about accessibility when you’re building a new building
  • Making your book available on Bookshare 
  • Changing a restrictive admissions policy

Sometimes there is no passive way to include people. Sometimes inclusion means active ongoing effort or expense

A couple examples of active inclusion:

Captioning:

  • Some people need captioning to understand speech reliably. (Including many people who can hear).
  • Captioning takes time and human effort. Computers can’t do it; it has to be done by people.
  • Live captioning has to be done by experts (in CART or TypeWell), and it’s inherently expensive.  
  • CART or TypeWell captioning events/classes in real time takes time, effort and expertise. It is inherently expensive.
  • High quality captioning also requires ongoing collaborative effort with the providers - people doing the captioning need to understand the words you’re saying in order to transcribe them accurately. So they need  to be provided with any acronyms, technical vocabulary, or culturally specific words you will be using.
  • If videos and events/classes aren’t captioned, a lot of people are passively excluded.
  • There’s no cheap or passive way to include them. Inclusion requires effort and resources.

Alternative format materials:

  • Some people can’t read standard print.
  • In order to access education or events involving print, they need materials in an accessible format
  • (Eg: electronic copies, braille, scans, large print, audio recordings, or something else, depending on the person)
  • Someone has to convert materials to an accessible format, every single time. This is inherently time consuming, and may in some cases require expertise or expensive equipment. 
  • Every time materials aren’t converted, print disabled people are excluded. 
  • There is no passive way to include print disabled people.
  • Inclusion of print disabled people is only possible when communities and schools and teachers are willing to put effort, time, and resources into inclusion.

There are many, many more examples of all three types of inclusion. When we talk about inclusion, the conversation needs to be about all three. Passive inclusion, setup inclusion, and active inclusion are all vitally important. People with disabilities are worthy of time and money.

Tl;dr Sometimes inclusion is easy and sometimes it’s hard. Sometimes inclusion means that you stop actively excluding people, and include them by letting them be. Sometimes inclusion means setting something an access feature initially, then including people by letting them be. Sometimes inclusion takes ongoing effort and expense. Sometimes inclusion means you stop passively excluding people, and start actively including them. All of these forms of inclusion are vitally important.

Autistic kids need to be able to talk about disability

Disabled kids need to be able to talk about disability. Difference isn’t a good enough word. Everyone’s different from everyone else in some way. Not everyone has a disability. People who have disabilities need to be able to talk about that, both in general and specific terms.

I’m writing this partly in response to comments I’ve seen on several good posts that have been circulating recently on why it’s important to tell autistic kids they’re autistic.

I’ve seen some parent responses that seem superficially positive, which actually miss the point:

  • “Yes, we told him about that. We told him it’s the thing that makes his brain different, and that it’s why he’s so smart.” or
  • “We told her that autism means she’s awesome!”
  • “We told him he just thinks a little differently.”

That’s not good enough, because it doesn’t address autism as a disability. Knowing the word “autism” only goes so far. Kids also need to be able to talk about disability in a nuanced way, without glossing over things.

Kids will know that there are difficult and painful aspects of being disabled whether or not you talk about it. You can’t protect children from that knowledge by refusing to talk about it; you just end up sending the message that they’re on their own in dealing with it.

Here are some other things autistic kids need to know, beyond the word autism (not an exhaustive list by any means):

The basic version:

  • Autism is a disability
  • It’s one of the reasons some things are really hard for you
  • It also comes with strengths
  • You’re not going to grow out of it. You *are* going to grow up.
  • You can do things that matter.
  • There are other kids and adults like you, and we’re going to help you meet some of them
  • Some people are prejudiced against people like you. It’s ok to be upset about this.
  • Some things are going to be different for you than they are for most other kids, in ways that might not be predictable.
  • It’s ok to have questions
  • It’s ok to feel however you feel about all of this
  • Your parents and other supportive adults are here for you, and will help you figure things out and get help when you need it

Some other, more complicated (and also not exhaustive) information:

And any number of other things.

Disability is complicated. Disability is something we spend our whole lives dealing with, and that we never stop learning about. This is not something you can cover with your child in one conversation When you talk to your kids about being disabled, it’s really important to let it be complicated, and to be honest about it being a long-term conversation. It’s important that they know that you can handle talking about it, and that it’s ok for them to have questions, feelings, and to need help figuring things out.

tl;dr Telling your autistic kid that they are autistic isn’t enough. You also have to talk to them about disability.

respectful autism language for people who aren't autistic

Anonymous said to :

Regarding your post about language politics and history, Do you recommend NT people use autistic or person first language as a default?

Of course I would change what I’m using based on the preferences of the autistic person I’m talking to, but if I don’t know preferences or if I’m talking to NT people?

I realize you can’t speak for everybody, I’m just looking for some guidance.

realsocialskills said:

I think the principle to keep in mind is that your language choices should always reflect respect for the people you’re talking about. The best way to do that is somewhat context-dependent.

I think usually the best thing to do is to alternate between “autistic” and “person with autism”, and explain why you’re doing that. Here’s an example of an article written by a speech language pathologist that does that well.

In certain contexts, it might be better to use one or the other. If you’re speaking at a developmental disabilities conference, it’s probably better to use person first language because that’s what most people present are likely to feel respected by.

If you’re speaking to a group of people who identify as autistic self advocates, you should say autistic. If you’re writing stuff on Tumblr or in social justice circles, you’re more likely to encounter a lot of autistic people who are offended by person first language, so “autistic” is probably a good default.

If you’re speaking at an autism conference dominated by parents and providers, it gets more complicated because they are likely to get very offended if you don’t use person first language, and spend a lot of time arguing with you about it. Sometimes it’s a fight worth having for the sake of expressing solidarity with autistic people who tend to be silenced in those spaces; sometimes the best thing is to say “autistic,” explain why, and let them be offended.

Sometimes it’s better to let it go and use the language they prefer so that they will listen to the other things you’re saying and not get hung up on words. That’s a complicated choice and there aren’t always right or wrong answers. (If there are autistic speakers at the conference as well, it’s worth checking in with them about what they would prefer that you do. If you want to express solidarity, it’s best to have people who are directly affected take the lead on issues like this.)

Also, most people are not offended by “on the spectrum” or “people on the autism spectrum”. It’s not associated with silencing autistic people in the way that professional use of “people with autism” is. When you’re in a group of people who have very strong views in opposite directions about “people with autism”, “on the spectrum” is often a good option.

tl;dr “Autistic” and “person with autism” are both personal berserk buttons for a lot of people those phrases describe. If you’re writing/speaking for an audience of people who have an emphatic preference for how they describe themselves, use that word. If you’re writing for a general audience, alternate between the two and explain why you’re doing so.

"Attention seeking behaviors"

Autistic people and other people with cognitive disabilities are often interpreted as doing things for attention, whether or not that explanation is plausible.

For example:

  • Alice is autistic. She flaps her hands.
  • Hand flapping is part of Alice’s body language. She moves her hands to express a large range of thoughts and feelings, just like some people move their facial muscles to express a broad range of thoughts and feelings
  • Alice also sometimes flaps her hands to calm down when she is overloaded
  • Bernice is a behaviorist. She is distressed about the fact that Alice flaps her hands.
  • Whenever Alice flaps her hands, Bernice stares at her, and pays intense attention to the fact that she is flapping her hands
  • Bernice notices that every time Alice flaps her hands, Bernice pays attention to her
  • Bernice concludes that her attention is reinforcing Alice’s flapping behavior
  • Bernice concludes that Alice’s hand flapping is an attention-seeking behavior
  • Bernice puts Alice on a behavior plan based on ignoring her whenever she flaps her hands

Behaviorists and others make this mistake a lot. They very, very frequently assume that the fact that they are paying attention to something means that it is being done to get their attention. It doesn’t. It just means they’re paying attention.

Starting at someone whenever they do something doesn’t mean that they’re doing it because they like being stared at. It just means that you’re staring at them.

tl;dr Stop calling everything attention seeking behavior. The fact that you’re paying attention to something doesn’t mean that someone is doing it because they want your attention. Not everything a person who has a developmental disability does is about you.

People with disabilities are not professional development objects

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.


tl;dr 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. 

A way people with disabilities are often wrongly percieved as angry

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).

tl;dr 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.

"I hope that I will live one heartbeat longer than she does"

youneedacat:

realsocialskills:

Content warning: This post is about sentiments leading to murder of people with disabilities. Proceed with caution.

At an autism conference recently, I heard the father of a 20 year old autistic man say in his speech to the whole conference, “I hope to live one heartbeat longer than he does. I’m sure many of you feel the same way about your children.”

That sentiment gets people killed. If you are the parent of a disabled child and you say things like this, it is a matter of life-and-death importance that you stop talking this way. The father who said this is probably entirely correct that many of the other parents in the audience felt the same way. I have heard this sentiment expressed by many other parents of children with disabilities (not just autism.)

Parents who hope to outlive their autistic children are talking about people who, barring tragedy, will almost certainly outlive their parents. Autism does not limit lifespan; most autistic people should live to be old. If you hope to outlive your autistic child, it means that you are hoping that their life will be tragically cut short. It means you think they’re better off dead than they would be living without you. That’s dangerous.

It’s not true. Nobody is better off dead. It is not a blessing to die young. Expressing a desire for someone to die young is not love. (People who say this may well love their children in other ways, but this sentiment is not love.)

Please stop implying that your child will be unable to live and be happy after you die. People just like your child live on in adulthood after their parents die, and your child can too. And they will have a much easier time of it if you accept that they will outlive you, and help them to prepare for their life without you.

The only way it’s likely to live a heartbeat longer than your autistic child is if you kill them and then yourself. Many parents who feel this way do exactly that. And, even if you would never kill your child, people who are considering committing murder can hear what you say. If you say that you hope to live a heartbeat longer than your child, it makes the murder that is the only way this can plausibly happen seem like a much more legitimate choice. Don’t give potential murders that kind of encouragement.

In the disability community, we observe a day of mourning and read a list of people with disabilities murdered by caregivers.

The list is long. And it’s only a list of the names we know. There are many others who died without making the news. 

I hope and pray that your child never ends up on this list. I hope and pray that they outlive you and have a happy and meaningful adulthood. I hope and pray that this list never gets any longer. 

One murder is too many. Not ever again.

Under the cut is the (as of this post) current list of the names we know. In loving memory; may these murders be the last:

Read More

youneedacat said:

Joel Smith and I (Mel Baggs) helped compile the original list of autistic people who were murdered by parents and caregivers, back in 2003.  This is a different list, but it incorporates that list so I am adding this on as historical information.

Also… I am autistic and have other physical, developmental, and psychiatric disabilities.  Right now I am in the process of outliving my father.  He is dying of cancer.  We don’t know how long he has, but it doesn’t seem like it will be long.  My mother has a number of life-threatening medical conditions, but has not been given any estimate of her lifespan.  But currently, despite my own poor health, my autistic brother and I look like we will outlive both of them.  My brother lives “independently” (which means he is dependent on all sorts of things, but they’re the same things nondisabled people depend on, so they’re invisible).  I live with a great deal of support for autism and a large number of medical needs.  I have people in my house several times a day and a service at night that can come within 5 minutes at any time.  

Meaning I’m one of those people that parents are afraid to let live.  Because I require extensive supports.  Fortunately, my parents have never expressed such sentiments and never would.  In fact, when my mother first heard someone say that, she freaked out and sent me a long email about how ever since a doctor counseled her to abort me, she’s wanted me around, and I should never ever doubt that she wants me alive.  So when you say those things, you also upset parents who have always wanted their children.  But anyway…

I’m going to survive the death of both my parents, barring some freak accident or sudden change in my health status.  Right now, I’m under treatment for my health problems (I have a feeding tube and take steroids for my adrenal insufficiency), so my risk of death is lower than it’s been in years.  I will not enjoy my parents dying.  Very few people would, unless their parents were total assholes, and even then they often mourn them anyway.  But I’m going to live through it.  I think my attitude towards death is healthier than most nondisabled people.  I can handle this.  Being autistic does not mean that my life will be over just because my parents’ life is over.

If you are afraid of what will happen to your children after you die, then start fighting for services right now.  It is parents and self-advocates who fought for the services that, right now, keep me and almost all developmentally disabled Vermonters outside of institutions.  You can do this anywhere.  People have done it everywhere.  Look at what people have done and emulate it.  Find ways to make the money follow the person, Medicaid waiver programs, that kind of thing, so that a person can live in our own apartment/house/mobile home or with a roommate if we choose, regardless of severity of disability.  The precedents are there, in countries around the world.  You can do this.

Don’t just build what you think is some kind of utopian institution (those awful farm communities everyone seems to love, but they’re still institutional in power structure) and put your child there.  Make a world where your child has a choice of where to live, even if you think they’re never going to be capable of making that choice, that’s not yours to decide.  I know people who couldn’t communicate choices until they were 30, 40, 50, 60, even 70, so don’t write your own children off.  Fight for the same rights that DD people already have in many places.  That’s where your energy should be going, not into whining about how you are the only person who could ever care for your child properly.

Because guess what?  You aren’t.  In fact, in many cases, people who are hired as caregivers do better jobs than parents.  Because parents have all kinds of emotional entanglements.  Parents try too hard to make decisions for their offspring, they cross boundaries that shouldn’t be crossed.  Other caregivers can do this too, but parents are especially prone to it.

One time a man said to me, “You mean I should let some high school dropout take care of my child?”  He had no idea that in the room was my caregiver, a high school dropout, and one of the best caregivers I had ever had in my life.  Lose your prejudices, they don’t do you any good.  I see a lot of classism in parents deciding that paid caregivers won’t be any good at their job, or will somehow be worse or more likely to abuse than parents or family will.

Not that what I have is perfect, but it’s a hell of a lot better than living with my parents, and it’s way better than being murdered.  And outliving your parents is an experience almost everyone has to grapple with, denying that to autistic people (by killing us!) is denying us one more normal experience in life.  Nobody takes it well.  Almost nobody, anyway.  That doesn’t matter, we still all have to deal with it.  Parents of disabled children often have this idea they should shield us from life’s difficulties, and that always is destructive.  Always.

disabledxena:

When disabled people say they don’t want to be treated differently, we mean we don’t want to hear your voice go up 5 million octaves as you talk to us like we’re toddlers, or see your face contort into a big plastic smile when you see us. 

We mean, treat us with the respect and dignity a human being has every right to.

We do not mean, ignore our disability and hold us to abled standards. 

Abled people just don’t get that.

Toward A Behavior of Reciprocity -- Morton Ann Gernsbacher (2006)

youneedacat:

This is the article by Morton Gernsbacher that references that teaching nonautistic children social skills improves autistic children’s social skills better than teaching autistic children social skills.  And other very interesting stuff along those lines.  This is one of my favorite of her examples of how everything we think we know about autism is wrong.

The link to the article is a PDF file.  I’ll paste the abstract below:

Abstract: Toward a Behavior of Reciprocity

GERNSBACHER, M. A. (2006). Toward a behavior of reciprocity. Journal of Developmental Processes, 1, 139-152.

It is frequently believed that autism is characterized by a lack of social or emotional reciprocity. In this article, I question that assumption by demonstrating how many professionals—researchers and clinicians—and likewise many parents, have neglected the true meaning of reciprocity. Reciprocity is “a relation of mutual dependence or action or influence,” or “a mode of exchange in which transactions take place between individuals who are symmetrically placed.” Assumptions by clinicians and researchers suggest that they have forgotten that reciprocity needs to be mutual and symmetrical—that reciprocity
is a two-way street. Research is reviewed to illustrate that when professionals, peers, and parents are taught to act reciprocally, autistic children become more responsive. In one randomized clinical trial of “reciprocity training” to parents, their autistic children’s language developed rapidly and their social engagement increased markedly. Other demonstrations of how parents and professionals can increase their behavior of reciprocity are provided.

Question for Autistics

ilovemyneurons:

Do you feel like you can spot other Autistics when you’re out and about in public?

I think that many of us are great at passing - not because we’re particularly fantastic actors, but because NT people are only aware of the most stigmatized elements of Autistic “behavior” (obvious stimming, loud voice, repeated echolalia, obvious misinterpretation of social cues etc.) 

For me, I find it fairly easy to recognize other Autistics based on their eye movement, gestures, body language, what they are wearing, how they respond to auditory stimulus, conversation patterns, and more subtle stim behaviors. 

I have had many interactions, mostly stim-based, with these members of my community, and I get a bizarre and euphoric feeling after these encounters. They have given me a lot of self-confidence, and make me feel connected in a way I never have before. It makes me feel a lot of feels. 

But when I try to explain these interactions to NT family/friends, I feel as though I am met with disbelief and anger. This causes me to question my own cognition and my feelings of community, and I am unsure of how to proceed with these feelings. 

realsocialskills said:

This all sounds really familiar.

Recognizing other autistic people and interacting in autistic ways is so great.

And then nonautistic people have no idea what you are talking about, because they see autistic differences as just meaningless weird things we do for no reason.

But our movement and other actions *are* meaningful, and being able to communicate with other people that way is *awesome.*

Whether NT folks understand it or not.

onceuponatumbl:

Thoughts on noticing disability experiences

realsocialskills:

saturniidaenightfever replied to your post“Anonymous asked realsocialskills: I’m physically disabled, and it…”
As an able bodied person, I am never certain when/if it’s appropriate to bring it up. I don’t want to belittle disabled persons, but…

onceuponatumbl said:

This is something that was really difficult for me when I first started working with adults with disabilities. Especially acknowledging the person’s disability or their equipment. It’s silly that people (myself included) try so hard to treat people with disabilities the way they would treat people without, that they fly past normal and end up in Awkwardly-Ignoring Town. It took me an embarrassingly long time to even feel normal/comfortable reminding a client to bring along her cane. A cane. It’s a stick! We can all see it, there’s no reason to pretend it’s not there.

Also, I’m hyper-aware of how matter-of-fact I am when assisting my clients in public places. I don’t really know why that is. I’m usually fairly matter-of-fact because my job is to help them do things, but in public I’m much more aware of my own behavior. Maybe I’m just being mindful that I could be setting an example or something?

Whatever. My point is this post is awesome and something that I’ve been trying to remember in my life for a few months.

Thoughts on noticing disability experiences

saturniidaenightfever replied to your post“Anonymous asked realsocialskills: I’m physically disabled, and it…”
As an able bodied person, I am never certain when/if it’s appropriate to bring it up. I don’t want to belittle disabled persons, but I also don’t want to be protected from their reality. How do you bring this up respectfully?
realsocialskills said:
The short version is - bring it up when it matters, respond respectfully when they bring it up, and don’t be creepy about it.
Some details:
On responding respectfully:
  • If someone mentions disability, acknowledge what they say, in the same way you acknowledge other things people say. Do not ignore them or wait for them to change the subject.
  • (I’m mentioning this because, very often, when I mention being disabled, people completely ignore me until I change the subject. It hurts. Don’t do that).
  • I think sometimes people ignore us when we mention disability because they’re anxious about saying the wrong thing.
  • It helps to keep in mind that someone mentioning disability probably isn’t actually asking you to understand everything and fix their lives by saying something brilliant. They’re probably just talking about their life, just like everyone else does
  • Even if you don’t know what to say, say *something*, or respond *somehow*
  • Eg, if someone mentions that they’re in pain that day, saying “That sucks” is a lot better than ignoring it.
  • Just, generally speaking, don’t treat disability as a scary taboo subject. Treat it as a normal thing to talk about.

A thought on language:

  • Generally speaking, the best language to use is the language someone uses for themself
  • Eg: If someone calls themself Deaf, don’t call them hearing-impaired
  • People have widely differing preferences on person-first language. Some people prefer to be called people with disabilities. Some people prefer to be called disabled. Some people don’t care much one way or the other. It’s best, if you can, to mirror the language someone uses for themself.
  • It’s also worth being aware that almost everyone hates being called “differently abled” and that most adults do not like to be called people with special needs.
  • That said, the most important thing is to speak to someone respectfully and to acknowledge them. Getting the language wrong is less bad than refusing to acknowledge or mention disability

Help people in a matter-of-fact way when they ask for help:

  • People with disabilities often need help at various times
  • Getting help can be really complicated
  • A lot of people like to feel like they are ~helping~, and that it’s an emotionally laden act of charity. 
  • But actual help is just - doing stuff people ask you to help them with. It shouldn’t be a big deal. 
  • .
  • Eg: Jane and Sue are in a meeting with other people in their office.
  • Someone in the meeting passes out an agenda
  • Jane’s hands aren’t working well that day, so she asks Sue to pick up her copy for her
  • Sue should do so without comment (unless she needs to ask a question in order to clarify what Jane wants her to do)
  • This would not be a good time for Sue to ask Jane questions about her hands
  • .
  • Another example:
  • Sam and James are coworkers. Sam is blind and James is sighted.
  • James and Sam work closely together and often go to offsite trainings or meetings
  • In a meeting in an unfamiliar place, Sam asks James to show him where the food is and tell him what is available.
  • James does so, and it’s not a big deal, because people who work together help each other with stuff. 

More thoughts on help:

  • If you have reasons for not wanting to do a particular thing, that’s ok
  • (Eg: if someone asks you to move a heavy box out of the way of the ramp, it’s ok to say “Actually that’s too heavy for me too - how about if I find someone else to move it?”)
  • If you think that something other than what the person is asking for might work better, it’s ok to suggest it, but not ok to override them
  • (Eg: “There’s an elevator across the street. Would that work?”, NOT “Just take the elevator!”, or “I think they may have accidentally sent us salad with croutons. Is that dangerous to you, or will you be able to pick them out?” NOT “Can’t you just pick out the croutons?”)
  • If someone tells you that they do not want help, back off. (Eg: If someone with a mobility impairment tells you not to hold the door, don’t hold it. They have a reason.)
Sometimes it’s important to bring up disability. When you see a potential access issue, say something to the person it affects, and ask them what to do:
  • Like “We all want to get together for dinner. Jane’s Loud Bar and Grill has awesome steaks, but it’s really loud. Does that work for you, or should we pick a different place?” or:
  • “We’re chartering a bus for the company picnic. What should we know about your access needs? Should we get a bus with a lift? Or is there another way that would work better?” or:
  • “There’s going to be a booklet for the conference. Do you need it in an electronic format ahead of time?” or:
  • “We’d like to show a movie to the class. What do I need to know about avoiding your seizure triggers?”
  • Don’t worry about making someone feel different. We know we’re disabled, and we know we are different.
  • What we can’t count on is having our access needs met so that we can actually do what we need to do.
  • Being willing to talk about access *and follow up on it* makes a big difference
  • Having to initiate access conversations all the time is exhausting (particularly since people tend to react very poorly to being asked to accommodate our needs)

Similarly, if you notice discrimination, let them know that you see it too, and, if appropriate, respond to it:

  • Eg: If you see someone treat a disabled friend or coworker in a degrading ableist way, it’s ok to say to them “Wow. That was horrible how he treated you. I’m sorry that happened.”
  • It can be really, really helpful to know that other people are seeing it too
  • It’s much less helpful if you’re looking for brownie points for noticing though; that can become another microaggression

Sometimes questions are ok, but some questions are really creepy:

  • We don’t like being everyone’s education objects or self-narrating zoo exhibits
  • But a lot of us are happy to answer certain kinds of questions
  • Eg: I’m generally happy to talk about my vision, my movement issues, cognitive stuff, and stimming, so long as the questions are asked respectfully and it’s clear that the person will back off if I don’t want to answer.
  • Do not ask questions that are aimed at investigating/debunking or the like. For instance “Why are you using a wheelchair? I saw you walk! Do you really need it?” is an obnoxious question. So is “Why can’t you look at me when I talk to you? My brother’s son got therapy and now he makes eye contact all the time.” or “Seriously? You’re allergic to *that*? No one had allergies like that when I was a kid. Why all these allergies all of a sudden?” or asking someone to answer a bunch of questions with their communication device in an attempt to trip them up.
  • Do not ask creepy questions. For instance: asking someone how they have sex, asking someone how they go to the bathroom, asking someone detailed questions about their body (particularly if you’re asking about body parts covered by clothing)
  • Back off if they don’t want to answer the question
  • They do not owe you an explanation of anything disability-related, or of why they’d rather not talk about things
  • Do not ask questions in order to assuge your own fears (eg: don’t ask someone how they became disabled if what you’re really asking is “please reassure me that this can’t happen to me”.)
  • Do not ask someone to justify choices they make about mobility, treatment, therapy, diet, health, how they move or anything else disability-related.
  • Do not ask someone to justify their desire to have children. Particularly, if you know someone is trying to get pregnant, do NOT ask them whether what they have is genetic.
  • (Yes, I know about gluten-free diets. No, I will not be trying one. No, I will not be explaining why.)

It’s ok to notice equipment. 

  • People who use mobility equipment know that they use mobility equipment
  • Really
  • This is not news to them
  • Admitting that you also notice will not be a sudden revelation to them that they are different
  • It’s not nice to ask nosy questions. But if someone, say, puts a bumper sticker on their battery box, it’s ok to notice and comment on said bumper sticker
  • If someone gets an awesome new cane, it’s ok to say you like the flower print on it
  • Just, generally speaking, you do not have to pretend mobility equipment is invisible

Also, acknowledge that being unaware of disability issues is a problem, and work on solving it. Don’t make your awareness the responsibility of your disabled friends or coworkers; this is your job, not theirs. If they choose to help you understand, they’re doing you a favor; appreciate it and don’t lean on them too heavily. Read things. Ask people who have chosen to make themselves available for education. Realize that being unaware of disability issues is a major gap in your understanding of the world, and seek to address it.

Replying to "Noticing a Consent Problem"

Offering multiple concrete choices can be a good idea if you notice that the person you’re talking to says ‘yes’ OR 'no’ more than usual.

My sister seems to have the opposite issue that you’re describing here; she replies with “no” to a lot of statements, even if I’m suggesting something she usually likes (like going to a movie). And similar to another reader’s experience, open-ended questions can get overwhelming for her. If I ask, “If you don’t want to go to the movies, what do you want to do this afternoon?” she usually answers, “I don’t know”. But if I say, “Would you rather spend time alone?” she’ll say, “No”. At this point I used to walk away, and I would tell her where to find me when she figured out what she wanted to do. Both of us would feel lonely after this happened.

But a few years ago I changed my strategy. The best response from me is the same as for the consent problem you described. If I offer my sister three or four choices of activities, she can figure out what she wants a lot better. And we can go through options or variations until she can communicate what she actually wants to do. We have a lot more fun when we spend time together now!

disability pity

Anonymous asked:

I heard that disabled people dislike getting sympathy, and I had trouble understanding that. But then later I was somewhat disabled, and received some unwanted sympathy, and I found it really horrible. I had a very strong feeling, maybe it could be called humiliation. So then I understood; but I don’t know how to explain that to people who haven’t experienced it. My theory: people like sympathy if something bad has just happened, but if it’s long-term then it’s normal for them.

realsocialskills said:

I think the main problem is that people offer disabled people sympathy for all the wrong reasons.

They want to tell us that our bodies are awful, and sympathize with what they imagine it must be like to be in such an awful body. There’s not a lot of respect there. Or willingness to listen to what we actually experience or how we actually see things.

People like that want to offer sympathy that it’s hard to understand without captions, but no sympathy for how frustrating it is that no one ever provides them. They want to offer sympathy for people’s inability to walk up stairs, but no sympathy for how awful it is that people decide not to build ramps. They want to offer sympathy that someone is dying for disability-related reasons, but no sympathy for the fact that they are being denied treatment by ableist doctors.

People with disabilities are, first and foremost, people. And people who ooze sympathy are not interested in recognizing that.

[content warning for brief mention of drug use and self harm]

I want to talk about something that has come up for me when applying/asking for assistance from health care providers, doctors, therapists etc (but I think it also happens with friends, relatives and co-workers/teachers etc). 

I just applied for disability assistance and this involved a fair bit of paper work and assessment of my disabilities, limits and abilities to figure out what I need help with and what I can do on my own. People go through lists of issues and ask if I have them, and almost invariably in these situations they will come to more stigmatised things like delusions, hallucinations, psychosis, and instead of asking me like they did with every other item on the list they just say that obviously I don’t have them and go to the next point. This happened also with things like personal hygiene (I am able bodied; this is probably different with people with physical disabilities) and around intelligence and language abilities and sometimes with drug use and self harm.

This happened usually during the first appointment I ever had with these people, meaning they had known me for only ten or twenty minutes. This makes it extra blatant, but especially as a health care provider you should not make these assumptions no matter how long you’ve known a patient.

This puts me in a very awkward position because the other person has just made it clear that they think the issue in question is somehow too shameful to even ask if it may apply to me, so if I DO have any of those things it has now become extra difficult to admit to them. It is already difficult to admit to having stigmatised health issues, but this makes it ten times harder. 

So you should never skip these kinds of questions or answer them yourself because there is a high risk of people not speaking up and correcting you and ending up not recieving vital care. And these are people who may already have a hard time getting access to health care because stigmatisation and ableism make it extra hard for them to ask for help or even consider that they might be allowed to get care.

Younger people with canes - a list of protocols

cecilbuildsthefire:

Hi everyone! Today we’re going to talk about cane users, and things you should/shouldn’t do around them!

Being a cane user (having graduated from a wheelchair, to arm crutches, to this) myself, I deal with a lot. I can’t use both hands to carry things. I often take stairs a little slower than everyone else. I make several trips. I start out to destinations extra early.

I was born with extremely poor alignment in my legs, leaving the tendons and muscles in my knees to cope with this and suffer a lot of damage. Additionally, I suffer from a blood disease that has weakened my body significantly, giving me balance and stability issues that recently have peaked due to the increase in physical activity required from attending college.

I want to go over a few things people should do around persons with canes - especially younger folk with canes.

The Do’s

  • If you see a cane user struggling, offer to help them! Sometimes, we just need a little extra help, whether it’s getting that package through the door or negotiating our food tray back to our seat.
  • Pick up the cane when they drop it if you have closer access to it than them. I have anxiety so when I drop my cane I immediately freeze up, going into overdrive and clutching the nearest thing to me for fear of falling.
  • Slow down for them a little. If you are walking in a group with a cane user, be aware that they may have a little trouble keeping up. I can haul ass when I want to, but it’s not painless or energy efficient.
  • Be aware. If you know a cane user is near you, be careful with your own body and items that you don’t disturb their balance or their cane.
  • Be polite. Don’t stare or ask questions, even if they look like they don’t need a cane or are too young to have one.

The Don’ts

  • Don’t ask questions. If they want to tell you, they will. I’m tired of explaining to complete strangers that no accident happened, that I simply have really messed up legs.
  • Don’t constantly offer help. It is one thing to lend a hand when it looks like it’s needed, but another to act like the cane user is a complete invalid. 
  • Don’t grab their cane. I don’t know why I have to put this on here, but whether they are standing or sitting do not take a cane user’s cane away from them. I rely on that to get around. Don’t be a jerk.
  • Don’t insist on helping if they turn it down. We know our limits, and can usually get around fine on our own. I personally am really shy so I have trouble accepting help from strangers. Insistence only furthers my anxiety about it.
  • Don’t stare. It may be odd to see a young person with a cane, but when you stare you can make them feel even more othered than having a cane already does.

Feel free to add to this if you think of something else! This is just a quick list I developed from my experience.

(ok to reblog)

iammyfather:

Uppity Negress: Some examples of social violence against disabled folks

sappy-nirvana:

frogsandrosbifs:

realsocialskills:

I wrote a post a while back about writing characters with disabilities. I said that in real life, disabled folks experience social violence regularly. In order to write realistic disabled characters, it’s important to write in…

iammyfather said:

Scaring people.  Some people think that if they see a blind person they can walk up and grab their arm and be “helpful”.  Think about it for a second. you’re in a crowd and a complete stranger comes up from behind, grabs you, and says “I’m here to help.” how would you feel.  I If you really want to help, Introduce yourself and ASK.  a simple “May i help you?” isn’t that hard.  If the person answers yes, THEN place your elbow  ahead of the unused hand and say “just reach forward and take my elbow.” Easy, non invasive, and helpful.  If the person says NO, do NOT insist.  Also if some one is deaf, DO NOT SHOUT.  It don’t help and it is embarrassing.

faintedincoils:

Time flies. The time flies feed on rotting clocks: Don’t take the accessible seats if you don’t need them

realsocialskills:

A lot of places have a few designated accessible seats, for instance:

  • Movie theaters will often have some seats next to wheelchair seating areas.
  • Bathrooms often have one accessible stall and several more inaccessible stalls
  • Busses usually have designated seating near…

faintedincoils said:

My friends always get angry when I refuse to sit in the accessible seats at the movie theater, or to let them do it.  "But Crystal, someone else will just sit in them!“ they say, like that’s an argument.  It’s just like, "Yeah.  And maybe that someone will be a person who needs to be there.  Keep walking up the stairs, people, leave those seats alone.”

Don’t take the accessible seats if you don’t need them

A lot of places have a few designated accessible seats, for instance:

  • Movie theaters will often have some seats next to wheelchair seating areas.
  • Bathrooms often have one accessible stall and several more inaccessible stalls
  • Busses usually have designated seating near the front for folks with disabilities

If you don’t need the accessibility features of the designated seats, it’s important not to sit in them. 

Because even if you’re willing to move, people don’t know that. A lot of people who sit in those seats are not willing to move, and become belligerent when people ask them to, particularly if they are not using mobility equipment. People who need the seats have no way of knowing how you will react. By sitting there, you are putting people in the position of having to decide whether risking asking you to move is more dangerous than risking going without the seat.

Do not do this to people.