actuallydisabled

Assistive technology does not cure disability

When I get into an airplane, I don’t turn into a bird.

All assistive technology is like that.

Airplanes are not wings, and wheelchairs are not legs.  Rolling is different from walking, and it’s ok that it’s different. Typing is not speaking, it’s typed communication. Reading braille isn’t seeing with fingers, it’s tactile reading. And so on. Assistive technology is important, and worth respecting.

Airplanes are amazing. I respect them without pretending that they are wings. Likewise, other people respect me as a competent human being without pretending that an airplane has turned me into a bird.

Assistive technology enables people with disabilities to do more things. It does not turn us into nondisabled people — and it doesn’t need to. We do many things differently, and that’s ok. Respecting us means respecting us as we really are, including acknowledging that our assistive technology exists and matters.

We're just like everyone else — and we're also different

In some ways, people with disabilities are just like everyone else. In some ways, we are very different. Both sides of that matter. Bad things happen when either is overlooked.

We are different from everyone else in that our bodies work differently. Most people have bodies that can do certain things. Our bodies can’t do all of the things that most other people can do. That matters. Being blind means something. Being d/Deaf means something. Having an intellectual disability means something. Being autistic means something. Having a mobility disability means something. Fatigue means something. Depression means something. The way we move, communicate, think, and perceive the world matters. Thinking about the differences created by our disabilities allows us to think about how to live with them — and live well with them. These differences do not need to be cause for alarm — we’re just people, and we’re part of the world, just like everyone else.

We are just like everyone else in that we are human beings. Our bodies are important. We experience pleasure. We have feelings. When people hurt us, we feel it, and it matters. Injustices against us are important, and we have the right to resist. We learn for our whole lives. If we survive to the age of adulthood, we become adults. When we wrong people, it matters. We are able to love. We can reciprocate relationships, consideration, and efforts. And any number of other things. Basically, we are people.

We are different from nondisabled people in that we can’t assume that we will be treated as equals in any context. Few, if any, spaces are designed with the assumption that we will be present, or that our presence is important. A school with a wonderful reputation for supportive friendliness may be aggressively, or subtly, hostile to students with disabilities. A movie theater may not bother to unlock the accessible doors, or may not have accessible doors at all. Airline policies may make travel impossible. People who say they are our friends may see us as charity projects, possibly with the encouragement of teachers or therapists. Or any number of other things. The daily toll of unmet access needs adds up, especially when the barriers are unnecessary, especially when they could be easily removed if anyone cared to do so.

We often can’t even assume that our humanity will be recognized.  In our culture, we are surrounded by people who think that disability makes us less than human — sometimes even within disability community. Sometimes it’s subtle, and sometimes it’s blatant. Many of us grew up subjected to therapy that would have raised outcry if it had been done to a typically developing child. Any number of books and movies raise the question of whether death is better than disability. 

Conversations about disabled people often do not include us, and often do not even recognize that we have perspectives of our own. When disabled people are murdered by caregivers, the murderers often get more sympathy than the victims. Ethicists with tenure debate whether disabled people ought to be allowed to be born, whether medical treatment for people with disabilities is a good use of resources, and whether we’re really people after all. And so on. The dehumanization adds up, too.  Even when we are treated well, we live with the knowledge that people just like us are not. 

We are fully human, and it is wrong to treat us as subhuman. In that sense, and many others, we are just like everyone else. We are also different. We are physically and cognitively different from other people, and those differences are important. We are also treated very differently from others, and that experience is important too. All of these things shape who we are, and the skills we need to live well. Glossing over disability does not serve us. We can get a lot further if we are matter of fact about all of this, and face these realities honestly. 

Tl;dr People with disabilities are just like everyone else in some ways. We are different from everyone else in some ways. We are the same in that we are people. We are different in that our bodies work differently — and in that others treat us as subhuman. All of these things matter.

We are people

When I see a picture of someone who looks like me, it’s usually illustrating a tragic or demeaning story.

Sometimes it’s a picture of a child, illustrating a story about how difficult life is for parents of autistic children. Or a story about how the child’s favorite thing got turned into therapy. With depressing bullying statistics.

Sometimes it’s a picture of an adult, illustrating a story about how difficult life is for parents of autistic children once their kids reach adulthood. Or a bleak story about unemployment statistics. Sometimes it’s a story about a special business or sheltered workshop for autistics that the parent is proud to say their child is involved with. With depressing unemployment statistics.

Sometimes it’s a story about how an autistic person has a special talent. Maybe they’re an artist. The story is always about how mysterious and beautifully tragic it is that autism sometimes gives people special abilities along with significant impairments. The story will not take them seriously as an artist. It will be a human interest story about autism, and no art experts will be quoted — but the headline will probably say “autism does not define him.”

This gets corrosive. It can make the world seem bleak and hopeless. It can be hard to remember that this isn’t an accurate way to describe us. That we are, in fact, more than that.

In real life, we’re people, and we do things. We do things besides be miserable or be inspiring. We have thoughts and attributes that are not convenient to the tragic plots of newspaper articles. We’re people. We do real things. And we matter.

I am not a tragic story; I am not an illustration. I am a real person. And so are you.

thoughts on dating while autistic

Anonymous said to :

Hi! I’m autistic, and I’ve never dated anyone, although I have been asked out before. Truthfully, I’m terrified of dating or being in a relationship, because I’m almost 18 and I’ve never even kissed anyone before, and I’m embarrassed!

I’m a pretty attractive girl and very good at hiding my autism, so people are interested in me at first, until I totally mess up flirting because of my social awkwardness.

Can you tell me what dating/relationships are like, so I know what to expect/how to act? thanks!

realsocialskills said:

I can’t answer this directly because dating and relationships are different for everyone. They aren’t about scripts; they’re about building something with another person that works for both of you. I don’t know what they will be like for you. That is something that you will figure out as you get more experience.

But I can tell you some related things:

It’s ok to be embarrassed. Figuring out dating is embarrassing for most people. That doesn’t mean that you can’t date or have relationships. It just means that you will be embarrassed sometimes.

Flirting is at least sort of embarrassing even when it’s working. Figuring out whether or not someone is interested in you is at least somewhat embarrassing for almost everyone. Flirting is a way to make the process of figuring it out more pleasant than embarrassing.

Flirting effectively is a bit like learning to play the violin — just like initial attempts to play the violin sound terrible, initial attempts to learn how to flirt tend to be acutely embarrassing. That’s ok. It doesn’t mean something is wrong with you. It just means that there’s a learning curve.

Also — it’s not unusual to be 17 and not have kissed anyone yet. Sometimes the way people talk about teenagers can make it sound like everyone is dating and having sex, but it’s not true. Some people are, and some people aren’t. Both are ok. A lot of people your age haven’t kissed anyone. And the people who are kissing others also get embarrassed and unsure of themselves.

(It would also be ok even if it was unusual. It’s ok if some things are harder or take longer for you than they do for most people.)

Many of the skills involved in romantic relationships are the same skills involved in friendship. And one of the most important skills involved in friendship is figuring out how to tell whether you like someone, and whether they like you.

Figuring out whether you like someone can be hard for a lot of autistic people. Among other reasons, a lot of us are taught that we have to be friends with anyone who will tolerate our company. That’s not how dating works and it’s not how friendship works either.

If you don’t like someone, you shouldn’t date them. If you don’t like spending time with someone, you shouldn’t date them. If you’re hoping that they will change dramatically, you shouldn’t date them. It’s only a good idea to date someone if you like them and enjoy their company as they are now. You can’t build a good relationship with an imaginary person.

Similarly, it’s important to only date people who like you. People who are hoping that you will change, or who want you to act nonautistic all the time, are not people who like you.

You can’t become nonautistic to please people who find autism repellant, and you aren’t going to be able to hide autism from them forever. It always becomes noticeable sooner or later, because autism affects you and your experiences and impairments matter. You are who you are, and your disability is part of that. And that’s ok, because disabled people can date, and we can do it well.

The most important thing to know about dating and relationships is that, in good relationships, the people involved like and respect each other. Respecting and liking yourself is an important part of learning to build a mutually respectful relationship. Liking yourself helps you to like others; and to tell whether others like you. Respecting yourself helps you to learn to treat others respectfully; and to understand whether or not the ways others are treating you are ok.

From the way you phrased your ask, I think that you might be having a lot of trouble feeling ok about yourself as an autistic person. I think that it would help you a lot to work on understanding that it’s ok to be autistic, and that you can be a fabulous autistic human being.

It sounds to me that you think that you have to pass as non-autistic to be dateable. You don’t have to do that. Autism doesn’t prevent kissing and it doesn’t prevent love.

A lot of autistic people struggle to feel worthy of love and friendship. A lot of us feel repulsive a lot of the time. We’re often made to feel that our thoughts, feelings, interests, and body language are disgusting flaws. But they are not. We’re ok. Being autistic is ok.

We are beautiful. The way we look and the way we move and the way we think is beautiful. Autistic beauty is real, and there are people in the world who appreciate it.

We are often taught that, unless we learn to pretend that we’re normal, no one will ever like us. (That’s the basic message of the Social Thinking curriculum, for instance). We’re also often taught that we’re not allowed to make mistakes. A lot of us feel like every time we make a social mistake, it’s showing that we’re deeply flawed and hopelessly unworthy.

That makes dating really hard, because everyone makes acutely embarrassing social mistakes as they learn how to date. (And often even after they have a lot of experience.). It sounds to me like you might feel like you have to earn the right to date by never making any embarrassing mistakes. You don’t. If that was the standard, no one would ever be able to date. It’s ok to be fallible and embarrassed and unsure of things. You’re ok.

There are people who will appreciate your beauty. There are people who will find you attractive. There are people who will love you.

You can learn how to date, and you can do it as yourself.

Respectful language as a nondisabled person

tiraspark replied to your post “person first language?”
I also think it’s very different for a disabled person to use these terms interchangeably than it would be for an abled person. You get to make that decision for yourself because you’re a part of the group so to speak?

realsocialskills said:

I don’t think so, actually. Nondisabled people have to use some form of language to refer to us. 

There’s not really much neutral terminology, and there isn’t a broad cross-disability consensus about which language is better. Even within disability groups, this issue is often contentious.

Nondisabled people have to call us something when referring to us, and I think that they could do worse than using both terms interchangeably. 

This article by an SLP, “Would you accept this behavior toward a non-autistic child?” is a piece that I think uses both terms in a clearly respectful way.

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.


tl;dr 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 and risk

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


For instance:


Housing:

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

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


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

Everyone gets blamed for their condition

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


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


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


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


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


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


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

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


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

Inclusion and accessibility don't go without saying

People don’t know that you will meet their access needs unless you tell them you will. Many people won’t, and people with disabilities can’t read your mind to figure out your intentions.

It goes a long way towards easing stress for everyone if you talk about access explicitly, rather than assuming it goes without saying that you will do the right thing.

For instance, if your store sign says “no dogs allowed” it should also say something like “except service dogs” (don’t say guide dogs specifically, because there are a lot of reasons other than blindness that some people have service animals)

  • This sends the message that you know service dogs exist
  • And that you’re not going to kick them out of the store for having a service dog
  • This does not go without saying; people with service dogs get illegally kicked out of stores all the time

Similarly, if you ban laptops/electronics, it’s important to say “except when they are needed by students with disabilities.” (and not to demand proof of diagnosis).

If you’re organizing a retreat and there is a rule against outside food, it’s important to either make an exception for people with dietary needs, or else work with people to provide them food they can eat. And to make it explicit that you will do this, because it very much does not go without saying.

If you’re advertising an event and it’s in an accessible venue (which it should be), put that information on the fliers (and make sure it’s true). That doesn’t go without saying. Many organizations whose values suggest that they should care about accessibility routinely hold events in completely inaccessible venues. No one will know that you’re doing it the right way unless you tell them. 

There are any number of other examples.

tl;dr: Keep in mind that people with disabilities can’t read your mind, and make it explicit that you will meet access needs, especially if your statements or rules suggest that you won’t.

I get where you’re coming from saying all autistic people are disabled, but I’m autistic and don’t consider myself disabled, because I move through the world with no external accommodations. I feel uncomfortable claiming the word disabled and I feel more uncomfortable when people apply it to me without my consent.
realsocialskills said:
Here’s what I mean by saying all autistic people are disabled:
Autistic people, *all* autistic people, have things that they can’t do that almost all neurotypical people can do.
That’s a significant fact. And it doesn’t go away because you’ve arranged your life in a way that works for you. And losing site of that can cause a lot of problems.
To use a personal example:
I have a terrible sense of direction. I absolutely need my iPhone to be able to go anywhere new by myself without allowing an extra hour to get lost. That’s true no matter how simple the route is.
I have, at many points, forgotten that I am disabled in this particular way. In my day-to-day life, I normally stay within a small range of a few very familiar city blocks. So I don’t experience my disability, I don’t notice I am disabled. I even, sometimes, forget that I am impaired in that way. I used to get myself into a lot of trouble assuming that I’d gotten over it.
Similar things happen with executive functioning. I need a lot of cognitive cues to be in place to be able to do things. If they’re there, then I can forget that I have problems doing stuff. Which can cause serious problems if what I need to do shifts and my existing cues don’t work anymore. 
Understanding that I haven’t gotten over disability and I’m not going to get over it helps me to function better. Because whether I notice my disability or not, it’s always there. When I remember and acknowledge that I am disabled it, I can plan to accommodate my disability.
I think this is true of all autistic people, whether or not they identify as disabled.

On feeling like you have no right to call yourself disabled

I have depression and OCD and I keep feeling like I don’t have the right to consider myself disabled or seek accomodation because they’re mental illnesses. How do I shake that feeling?
realsocialskills said:
I think that it might help to realize that self-doubt is normal for people with disabilities. I think most of us feel that way, regardless of what kind of disability we have. 
The reason this is important to understand is that often, when we feel doubt, it can feel like evidence that there’s a *reason* to feel that kind of doubt. But it it isn’t. Most people with disabilities feel that way.
I don’t think this actually has much to do with your particular conditions being mental illnesses. 
Categories don’t matter, except for some practical reasons like access to services and making it easier to find other people who get it. What matters is what your needs are. If you need accommodations in order to function well, it’s important to seek them out. Spending a lot of mental energy agonizing over whether or not you deserve them is not going to do you or anyone any good.
I think part of the reason a lot of us feel this way is that we never really see descriptions of disabled folks who resemble us, but we see a LOT of descriptions of disability that don’t match us at all.
Think about what the media’s like. It’s full of people who bravely overcame their disabilities. It’s also full of stories like “the doctors said my baby would never walk, but we didn’t listen to those doctors and now she’s an honor student!”. It’s also full of smutty stories about people who didn’t overcome their impairments suffering and dying and being mysterious unpeople. Or as having super powers, or as having a disability kind of like an accessory, without it affecting their life in any significant way. None of these descriptions match what people with disabilities are actually like, but they are *the only ones we ever see*.
And even beyond what the media says, most people without disabilities have no idea how wrong these descriptions are. It’s jarring. 
When your actual experience with disability bears little resemblance to what everyone around you thinks disability is like, it’s easy to feel like a fraud.
One thing that helps with that is seeking out other people with disabilities similar to yours who think of disability in a matter-of-fact way, and work on trying to live well with your kind of disability. When you talk to people who get it, it makes it a lot easier to realize that what you are experiencing is real.
So, for you, it would probably be really helpful to find more people with depression and OCD to talk to, and more authors with depression and OCD to read.
Also, be careful about exposing yourself to people who yell a lot about fake disabled people or appropriation. Those people are wrong, but what they say hits insecure disabled folks really hard. If you’re not confident about yourself, you can get hurt really badly by that ideology.
Do any of y'all have suggestions either of good resources for depression/OCD community, or other ways of coping with feeling like you don’t have the right to consider yourself disabled?