disability hate

When fear of wheelchairs is really fear of institutionalization

Journalists sometimes inappropriately describe wheelchair users as “wheelchair-bound”. This is offensive, because it’s misleadingly negative. Wheelchairs aren’t a restriction, they’re a liberation. They make it possible to go places and do things, and to move through the world without needing someone else’s permission. Wheelchairs are absolutely amazing and should be viewed as positive.

Except — in institutions, wheelchairs are routinely used as restraints. (And sometimes instruments of humiliation and torture). And I think that is probably a factor in why many people find wheelchairs frightening.

Walk through the hall of any nursing home, and you’ll see people parked in clunky manual wheelchairs that they aren’t able to self-propel. (And which don’t fit properly, don’t have good positioning support, and can be very painful to sit in for extended periods). Those people aren’t being liberated. Those people are very literally wheelchair bound. Often over their obvious protests.

People in institutions who try to get out of wheelchairs tend to be strapped in with seat belts they can’t undo. People who persist in resisting that tend to be medicated until they can’t. People who live in institutions also tend to have some times in their lives where things look pretty good, where it looks like they’re being well cared for and that they’re happy and enjoying themselves. Those good times aren’t representative of what it’s like to live in a institution. On some level, everyone knows this.

I think sometimes, when people are afraid of wheelchairs, what they’re really afraid of is institutions. They’re afraid that needing a wheelchair means that those kinds of things will happen to you. They see people in wheelchairs having a good time and out and about in apparent freedom, and they viscerally feel like it’s an illusion, like it’s no more representative of reality than the times you see institutionalized people having fun and looking free.

I think that in order to teach people that they’re wrong about wheelchairs, we have to teach them that they’re wrong about institutions. Losing mobility doesn’t have to mean living locked up in a nursing home. Neither does losing speech or words or cognitive functioning. People with severe physical and cognitive disabilities live in their homes in the community.

There is no disability that means someone needs to be institutionalized and treated the way people are treated in nursing homes. No one should be stuck in an institution. Institutions aren’t inevitable; they are always a social failure. Institutions are bad; wheelchairs are good, and wheelchair users can live in their homes as free people and have good lives. 

Tl;dr Wheelchairs are good, but a lot of people are viscerally horrified by them. I think this is in part because people associate wheelchairs with institutionalization. They see horrible things happening to wheelchair users in institutions, and think that’s what it means to be a wheelchair user. If we want people to understand that wheelchairs are good, we need to teach them that no one needs to live in an institution.

Pedestals, disability, and equality

When people effusively praise people with disabilities for doing trivial things that we do every day, it can seem like they’re putting us on pedestals.

I think they’re actually putting *themselves* on pedestals.

They think that we have a human need to feel respected. They also think that we’re incapable of doing anything worthy of real respect. They believe that they are nobly twisting reality to give us what we need. They think that we need everyone to lie to us constantly, so that we will be able overselves to fill a false sense of being valued.

They put themselves on pedestals that they can look down at us. They express contempt for us and expect us to see it as a favor. This is an awful thing to do. The things we do matter (even when they are small), and we are all worthy of real respect. 

We should all meet as equals. No pedestals are needed.

Ableist hostility disguised as friendliness

Some people relate to people with disabilities in a dangerous and confusing way. They see themselves as helpers, and at first they seem to really like the person. Then the helper suddenly become aggressively hostile, and angry about the disabled person’s limitations or personality (even though they have not changed in any significant way since they started spending time together). Often, this is because the helper expected their wonderful attention to erase all of the person’s limitations, and they get angry when it doesn’t.

The logic works something like this:

  • The helper thinks that they’re looking past the disability and seeing the “real person” underneath.
  • They expect that their kindness  will allow the “real person” to emerge from the shell of disability.
  • They really like “real person” they think they are seeing, and they’re excited about their future plans for when that person emerges.
  • But the “real person” is actually figment of their imagination.

The disabled person is already real:

  • The helper doesn’t like this already-real disabled person very much
  • The helper ignores most of what the already-real person actually says, does, thinks, and feels.
  • They’re looking past the already-real person, and seeing the ghost of someone they’d like better.

This ends poorly:

  • The already-real person never turns into the ghost the helper is imagining
  • Disability stays important; it doesn’t go away when a helper tries to imagine it out of existence
  • Neither do all of the things the already-real disabled person thinks, feels, believes, and decides
  • They are who they are; the helper’s wishful thinking doesn’t turn them into someone else
  • The helper eventually notices that the already-real person isn’t becoming the ghost that they’ve been imagining
  • When the helper stop imagining the ghost, they notice that the already-real person is constantly doing, saying, feeling, believing, and deciding things that the helper hates
  • Then the helper gets furious and becomes openly hostile

The helper has actually been hostile to the disabled person the whole time

  • They never wanted to spend time around the already-real disabled person; they wanted someone else
  • (They probably didn’t realize this)
  • At first, they tried to make the already-real disabled person go away by imagining that they were someone else
  • (And by being kind to that imaginary person)
  • When they stop believing in the imaginary person, they become openly hostile to the real person

Tl;dr Sometimes ableist hostility doesn’t look like hostility at first. Sometimes people who are unable or unwilling to respect disabled people seem friendly at first. They try to look past disability, and they interact with an imaginary nondisabled person instead of the real disabled person. They’re kind to the person they’re imagining, even though they find the real person completely unacceptable. Eventually they notice the real person and become openly hostile. The disabled person’s behavior has not changed; the ableist’s perception of it has. When someone does this to you, it can be very confusing — you were open about your disability from the beginning, and it seemed like they were ok with that, until they suddenly weren’t. If this has happened to you, you are not alone.

“Choosing to be disabled”

Ableists often believe that “choosing to be disabled” is a major social problem. They aggressively believe that most disabilities aren’t real, and that people could stop being disabled if they’d just make better choices. They think most disabled people are fakers who just stay disabled out of laziness.

They may see accessibility and accommodations as “enabling”, and try to get them taken away. Or, they may try to force people into treatment (whether or not safe and effective treatment actually exists.) Or they may just be mean and hostile towards disabled people they encounter. Or any number of other things. This hurts all disabled people badly.

People with disabilities often feel like they have to prove that they are not faking, and that their disability isn’t a choice. This can lead us to worry a lot about whether we’re somehow doing this on purpose. In this state of mind, it’s really easy to find things that feel like evidence that we’re fake.

Disability usually involves tradeoffs. We can’t choose to have all of the same abilities as nondisabled people, but we often can make some choices about which abilities to prioritize. This can superficially look like “choosing to be disabled” if you don’t understand how disability works.
For instance:

Medications:

  • All medications have side effects
  • Managing the condition and the side effects can involve complicated tradeoffs
  • There is usually more than one option
  • It can often be a choice of what abilities you prioritize most, and which impairments are most tolerable
  • You may be able to choose to make any particular impairment go away
  • That doesn’t mean you could choose to be unimpaired
  • Ableists will think you are faking no matter which choices you make. They are wrong.

Mobility equipment:

  • People with mobility impairments often have more than one option, and there can be complex tradeoffs. 
  • Eg, which is more important to someone?
  • Being able to go further without fatigue (in a power chair) or being able to ride in a regular car (with a collapsable wheelchair)?
  • Being able to travel a mile on the sidewalk (in a wheelchair), or being able to use all of the subway stops (by walking)?
  • Being able to get into inaccessible buildings (by walking), or being able to go out without being in pain (in a wheelchair)?
  • Retaining the ability to walk (by spending a lot of time doing physical therapy) or being able to take a full course load in college (by spending that time on studying and losing the ability to walk)?
  • No matter which choice you make, ableists who don’t understand disability will see it as “choosing to be disabled”. They are wrong.

There are any number of other examples, for every type of disability. This affects every kind of disability, including physical, sensory, cognitive, psychiatric, chronic illness, and the categories I forgot to mention.

Tl;dr We all have to make choices about how to manage our disabilities, and there are often complicated tradeoffs. No matter which choices we make, ableists will think we’re making the wrong ones. No matter which choices we make, ableists will think that we are faking.

In the face of this kind of hostility, it is easy to start doubting ourselves and believing that we’re fake and terrible. It helps to remember that the ableists don’t know what they are talking about (even if they are disabled themselves). Making choices about how to manage disability is just part of life. The ableists are not experts in how you should be living you life; they are wrong and they are mean.

A reason your kids need you to talk to them about their disability

Sometimes parents avoid talking to disabled kids about disability because they don’t want to make them feel different.

The thing is, it’s not actually possible to prevent your child from noticing that they are different. They will notice that they aren’t just like all the other kids. Partly because it’s obvious. Kids compare themselves to other kids, and to adults that they observe. Disability is as noticeable as the fact that some people are fat, female, tall, short, black, white, or whatever else. Kids notice differences. They will notice this difference too. And that’s ok.

They will notice that you are willing to talk about some differences, but not others. If you refuse to talk about disability, they will still know that they are different. They will just learn that you consider the difference unspeakable.

They will also notice what other people think about them and their disability.

People will stare at your child and make disparaging remarks. People will call them the r-word, and every other disability slur. They will say “special” and “special needs” with a sneer. They will make fun of your child for not being able to do things. They will say, or imply, that they would be able to do them if they’d just try harder.

You can stop some people from doing this to your child (and you should), but you can’t stop them from ever encountering it. They will probably encounter it every day. They will know that they are different from other people, and our culture will teach them incredibly destructive things about what that means.

You can’t stop your child from hearing what our culture thinks of disability — and if you don’t talk about disability yourself, your child will believe that you agree with it.

If you don’t talk to your child about their disability, the only words they will have for themselves are slurs they hear other people call them. You can give them better words, and better information.

If you don’t talk to your child about their disability, they will end up with a lot of misinformation about what their difference means. If you talk to them, you can tell them the truth.

tl;dr Refusing to talk to kids about disability doesn’t protect them from feeling different. It just prevents them from getting accurate information about what their disability is and what their difference means. When kids who don’t know the truth about their disability face hate, they have little-to-no protection against internalizing it.

Don't be mean to fat disabled people

Some disabled people are fat.

Some fat disabled people have mobility impairments, and need to use wheelchairs and scooters.

Some fat disabled people need to sit down a lot.

Some fat disabled people need to park in handicapped parking.

Some fat disabled people need to sit in the disabled seating on busses.

Some fat disabled people need to use the bathroom stall that has grab bars.

Some people act like fat people are somehow “not really disabled, just fat” as though the two are somehow mutually exclusive. They’re not. Fat is not a cure for disability. Fat disabled people are as disabled as thin disabled people. Fat people have every right to exist in public and use mobility aids and other adaptations.

Some people act like being mean to disabled fat people will somehow force them to stop being fat and disabled. It won’t. Being mean is not a cure. If you yell at a fat disabled person for needing to park close to the building, it won’t give them the ability to walk further safely. It will just mean that their day got worse because someone decided to be pointlessly cruel to them.

tl;dr Fat disabled people exist, and have a legitimate need for access and accommodations. Being mean to fat disabled people for having access needs doesn’t cure their disability. It just makes the world a crueler place. Don’t be a jerk.

you don't have to be perfect at self care to deserve medical treatment

Disabilities and chronic conditions often require difficult and time-consuming self care.

For instance:

  • People who are paralyzed have to pay very close attention to their skin to avoid dangerous pressure sores
  • People with CF have to do a lot of breathing treatments
  • A lot of people have to keep track of a very complicated medication schedule
  • Or any number of other things

A lot of medical complications are preventable with the right self care. But no one manages perfect self care, because self care is hard, and people are human and nobody is perfect.

Making a mistake that leads to an injury that was theoretically preventable sometimes pisses off doctors. It’s also something that people sometimes feel very ashamed of. This can be a deterrent to getting medical care.

It’s not right that it’s this way. You don’t have to be perfect to deserve medical care. Sometimes you make mistakes and need treatment. That’s part of the human condition, and it doesn’t mean you’re somehow less deserving.

Nondisabled people injure themselves doing careless things all the time. People who fall off bikes in a moment of carelessness and break bones get to have medical treatment without facing that kind of hate. So do people who burn themselves cooking. Doctors are capable of understanding that people make mistakes and get hurt — and people with disabilities deserve this understanding just as much as anyone else.

Everyone who needs medical care deserves it. Including people who make mistakes. Including people with disabilities who make mistakes. You don’t have to be perfect at self care to deserve treatment.

Rigorous attention to self care is important. So is medical support for needs that arise, including as the result of mistakes.

youneedacat:

soilrockslove:

realsocialskills:

altimetres:

realsocialskills:

fourloves:

realsocialskills:

When people say “I can’t” I’ll sometimes encourage them to say “I decided not to” or something instead. Nobody can predict the future, so maybe nobody can know for sure whether somebody would be able to do something if they tried some more times. However, a person has a right to decide to stop. They may judge that it’s so unlikely they would succeed that it’s not worth trying; and doing it may not be worth a tremendous amount to them. I also have a right to my opinion that maybe they can.
realsocialskills answered:
You have a right to your opinion, but you don’t have the right to have them respect your assessment of their abilities. You especially do not have the right to have them take your opinion into consideration when they’re deciding what they can and can’t do.
Inability to do things is real. And yes, I may sometimes be wrong about my inability to do things, but taking it seriously when I think I can’t do something matters. Even if I’m wrong.
There’s a difference between deciding I don’t want to do something, and deciding that I think I am incapable of something, or that doing the thing is unacceptably risky for me.
Even if other people think I’m wrong - I still have the right to assess what my limits are and act accordingly. And even though I will sometimes mistakenly think that I am unable to do something I am actually capable of, “I can’t” is still a vital part of my vocabulary.
There’s a difference between not wanting to do a thing, and reaching the conclusion that I’m probably not capable of doing the thing and that trying is hurting me.
I need to be able to acknowledge that I have limits in order to manage them correctly, and do what I can instead of pretending that enough willpower makes everything possible.
So does everyone else. In particular, people with disabilities who have been taught that we’re not allowed to take physical limitation seriously. But being disabled and physically limited isn’t a moral failing. It’s just a fact of life that sometimes needs to be accounted for.

fourloves said:

anon needs to go away

who else gets chills when special ed teachers say “the word ‘can’t’ is not allowed in my classroom”

realsocialskills said:

Yes, teaching kids with disabilities not to recognize their own limits is a *major* anti-skill, and it does serious damage to people with disabilities.

altimetres said:

This. This. THIS.

I cannot tell you how many times in my early education I was told I am not allowed to say “I can’t” by special education teachers. At such a young age, that is dangerous. You are telling someone that they are not able to say “I can’t” to a variety of situations which can lead to very bad endings, and it is never the students fault.

One thing I remember clearly is one of my physical education teachers doing this. I have had joint problems my whole life (at 14, my knee joints were filled with micro-fractures, and that was not enough to get me out of PE), and it was never respected. One particular day, the teacher was putting harnesses on us to climb this indoor rope net. I KNEW I would not be able to manage it, as it requires a lot of work from your lower body. More importantly, your fucking knees. 

I told my teacher “I can’t do this” and she gave me the same speech that anon gave. “You CAN do it, we can’t tell what’s going to happen. You’re not allowed to say you can’t.” And even when I fought it, even when I went to walk away, I was threatened with a failing grade for the day. And since all my special education (well, 97% of it told me I couldn’t say no), I ended up on this net.

And what happened?

I made it four feet up, my knee popped out of it’s socket, and I was taken down crying as it popped itself back in. As my joints did.

And my teacher said “See, you CAN. Even with pain you CAN, you just don’t want to.”

This landed me on crutches and in doctors offices for 2 weeks.

So yeah, I wish I would have had more teachers with the guts to tell me “You can say no and mean it”. 

Fuck ableist teachers, get a new job.

realsocialskills said:

Yes, this.

This is what it does to people when you tell them “You’re not allowed to say I can’t.”.

soilrockslove said:

All of this!

And besides all this, if someone says “I don’t want to” and you force them to do it anyway - that’s no good either. O_o  And most people who I know who have said “don’t say can’t” aren’t that good at respecting “won’t” either.

youneedacat said:

This attitude is extremely popular among nurses, LNAs, and physical therapists and my local hospital.  And I’ve seen it do serious damage, both to me and to roommates I’ve had.

There’s a particular, really seriously awful, trick I’ve seen them pull on people multiple times.  Including me once, at which point I refused to ever get in a position where they could do it to me again.  (Which involved at one point firing my physical therapist.)

So here’s an example:

I was in really, really bad pain.  Not the worst pain I’ve ever felt, but bad enough that I couldn’t make myself sit up.  And I’m good at making myself do damn near anything.  This turned out to be because my feeding tube hadn’t been inserted properly, but they treated me like I was just being a wuss and complaining too much.  Like my roommate at the time would get them rushing into the room and giving her five different kinds of pain meds for every twinge, while I was actually frequently delirious from pain and they only grudgingly gave me pain meds, and only one kind.  It was really frustrating.

But here’s what they pulled on me:

They wanted to get me to get up and transfer to a bedside commode to use the bathroom, rather than being rolled and using the bedpan.  I don’t know about you, but if I’d been able to get up and use the commode, I would have:  I hate bedpans.  But they seemed to think I was being lazy.  They said they had people with much worse surgery than me up and moving on the first day, and therefore that I was just being lazy.  Nobody thought to check and see why I was still having excruciating pain so long after the tube was placed, when it shouldn’t be doing that.  No, they just chose to doubt that the pain was really that serious.  The pain had to get to a nine on the pain scale, after I got home, before anyone even checked the position of the tube, only to find that a piece of it was lodged in a really horrible position.

So what they did:

They badgered me and cajoled me and forced me until I finally put forth a phenomenal amount of effort to get up.  This involved gradually rolling over and creeping along the bed, taking frequent breaks in which I was crying and screaming from pain.  (It takes a lot of pain for me to do that.)  It was painstaking and horrible.

Then, after getting some help and getting to the commode, they showered me with praise and told me “See, you can do it after all, you just have to try.”  They told me how great I was for trying.

It was horrible.

Doing that to someone is a violation.

And it wasn’t a one-off thing, I saw them do that to a roommate with myasthenia gravis who was terrified of falling, forcing her to walk across the room and then showering her with praise at the end.  She had some cognitive disabilities that made it hard for her to see that as manipulation, and they were able to talk her into endangering herself regularly.

If you’ve never been in that situation, maybe you don’t know what a huge violation it is.

But to push someone into doing something that is painful or dangerous to them, to badger and cajole and threaten and harass them until they do it, and then shower them with praise when they can do it after all… it gets into their heads.  It tells them that they’re wrong about their abilities, that some nondisabled person has to show them their real potential.  And it puts them in grave danger, a lot of the time, because it overrides their own ability to judge what is safe for them and what is not.  It’s awful and it should never be done.

After the incident above, I fired my physical therapist and refused to get out of bed until the pain went away some.  I was told that if I stayed in bed for even a week I’d get deconditioned and horrible things would happen.  I told them I’d single-handedly brought myself back from months worth of deconditioning and that a week wouldn’t kill me.  But I had to fight them every step of the way.  It was worth it, though, because pushing through pain that bad is never a good thing.

disabilitythinking:

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 I…

disabilitythinking said:

This is SUCH a great list. I mean it. There’s a complete disability etiquette seminar in there, and much better than the usual boilerplate and rather obvious stuff that usually passes for disability etiquette / awareness content.

I’d like to add an item …

Just as a surprising change of pace, if you want to connect with a disabled person, instead of asking about their disability, ask them whether they often experience barriers or discrimination. For most disabled people, the subject of their actual disability and how they become disabled is boring old news. What continues to engage us every day are the barriers and discrimination we face, and talking about them is kind of taboo on us, because we don’t want to be seen as complainers. Inviting us to vent can be most welcomed, and at the same time will give you a glimpse into what life with a disability is like.

Be prepared to listen though. Don’t invite the conversation only so you can engage in some kind of “devils advocate” debate, or to expound your theory that accessibility is a waste of money, or that there are too many handicapped parking spaces.

realsocialskills said:

Yes, this.

Also, keep in mind that if you really listen to disabled people about discrimination, you’re going to come to realize that you’ve done things that hurt disabled people. You’re also going to find out about awful things people you like and respect have done to your disabled friends and coworkers.

This might be hard to hear. You might have trouble believing that someone who is otherwise wonderful could possibly be the kind of person who would do things your disabled friend tells you about. You might be tempted to try to smooth things over, tell your friend what a great guy they are, or try to convince them that it wasn’t a big deal and they meant well.

Don’t do that. People with disabilities really do experience humiliating discrimination on a regular basis from ordinary people, including people who do a lot of good in the world and treat many people well.

twistmalchik:

a shorter version of the last post

oneautisticturtle:

realsocialskills:

As disabled people, we learn early that it’s our job to protect abled people from ever having to notice either the logistical problems or the hate we face. And especially, we learn not to show that it hurts us. And double especially, we learn that we are not allowed to tell friends or caregivers…

oneautisticturtle said:

Something that helps with unlearning it? Stop trying to look normal. Figure out what are your sensory sensitivities, for example (or any other needs, but I started at sensory), what would help. Does that make you look abnormal? Use it anyways. Don’t do anything other than use it. If someone asks, tell them why. 

Don’t purposefully stim, or purposefully avoid stimming, but if there’s a way you can keep track of it, the more you just say, I am just actively saying I’m not looking normal, I’m doing what I need, you’ll probably start stimming more in public. Or maybe your stims will change. And people might ask. Or they might start stimming alongside you. 

Don’t be afraid of needing some things sometimes and not at other times. That’s one of the hardest parts for me, is getting through the part where you don’t always need the same thing. It’s okay to use a cane sometimes, if you need a cane sometimes, and that doesn’t mean that you’re faking because you only need it sometimes. Using it those times where it makes it a lot easier for you, even if you could make due without. Why do that to yourself? That’s not the purpose of everything. It’s not about looking normal. It’s about making yourself functional. 

People will ask questions. Sometimes, it’ll be friendly, sometimes it won’t. Sometimes, you’ll not be able to deal with it all right then, and will be embarrassed afterwards that you gave in and used an easy way out and didn’t give all the information. (Like when I used my migraines as the reason I carry things which I would carry just for my migraines, but use to cope with other disorders).

But overall, you’ll likely be more open to yourself about how you act in general in terms of not hiding, by starting with the tools you use. And the tools will likely grow as you get more and more accepting of yourself in that way you didn’t realize you weren’t accepting of.

I have an AAC app on my phone now. I’ve used it to do things like order food. I didn’t even realize an AAC app would be helpful a few year ago.

I started with just getting earplugs about two years ago. 

Is it everything? No, but it definitely helps.

twistmalchik said:

I agree with this reply.

Part of being happy and healthy as a disabled person is being unapologetic.

My stims and sensory needs don’t hurt anyone. The cane Boyfriend uses doesn’t hurt anyone. Why are we the ones being told to apologize?

Somehow existing as a disabled person who isn’t sorry that they are disabled is seen as militant. Not wanting to be pitied or used as others’ inspiration porn is militant.

I think we have to choose. Who am I going to take care of? Myself or the guy that’s making 47 false assumptions about me?

realsocialskills said:

I’ve found that it’s something of a double edged sword.

Being more open and unapologetic about who I am has helped in all of the good ways you both mention.

But it’s also made it much harder to get along with most ableist people. When I look more like myself, I attract more hostile attention. When I am honest about why I look the way I do, I have to deal with people’s assumption that autistic people have no empathy, feelings, or ability to care about other people.

I am much more comfortable in my own skin now. But that comfort means that, now, I expect to be treated well and I get angry when I am not. I’m much less willing to back down when people treat me badly or refuse to meet my access needs. This can be good, but it can get really bad really fast.

I think - my approach is better than it used to be, but that it probably still needs a lot of calibrating. There are battles I try to fight that I should probably back away from. There are people I need to be more cautious about antagonizing. There are people who it is very very dangerous to be honest with, and I’m not sure how to properly take that danger into account.

Do y'all have ways of dealing with the retaliation you face for being less apologetic about being disabled than people want you to be?

annekewrites:

Ugh, passing

applebeloved:

An anti-skill that interferes with friendship

realsocialskills:

This post is a further response to an ask by someone who identifies as aspie and is struggling to making friends.

Yesterday, I addressed the burden of stigma we face, and how it can make it hard to find…

annekewrites said:

Passing is so frustrating.

Some days I can hide my mobility issues, and I tend to feel like just because I can, I should.  In part because I’m also fat, and being a fat person with visibly obvious mobility issues is just asking for crap.

This rarely if ever ends well for me.  Just because I CAN go up stairs doesn’t mean, most of the time, that I SHOULD go up more than one flight of stairs at a time, and sometimes I really shouldn’t even do the one.

This is extra-fun when in an office environment promoting “fitness”.  :(

realsocialskills said:

I think The Spoon Theory is really helpful in dealing with this.

The costs of doing things matter. It is possible to be sort of capable of doing a thing at a high spoon cost, but incapable of doing it and all the other things without incapacitating yourself.

It’s hard to keep that in mind when other people think that if you can technically do the thing, you must do the thing or else you’re being lazy or something. But keeping it in mind really, really helps.

techno4tomcats:

tser:

secretsofthedisabled:

dendriforming:

slightmayhem:

secretsofthedisabled:

realsocialskills:

secretsofthedisabled:

SRS: Yellow

tw: ableism, staring at disabled people

realsocialskills:

I look contagious but I’m not. How do I tell people this? How do I get them to stop staring and stop being afraid they’ll catch my uncatchable condition?
realsocialskills said:
I don’t know, unfortunately. Do any of y’all have strategies for dealing with this?

secretsofthedisabled said:

My answer even now is cover up. That’s all I can do. I wish there was a better solution, sorry. If anyone has one, I’d love it.

(I’m also chiming in that wearing a t-shirt with my condition on it is highly uncomfortable and just not feasible.)

realsocialskills said:

What do you mean by cover up? Do you mean like, wearing a lot of clothing? Or something else?

secretsofthedisabled said

For example, if the mark is on your neck, wear high collars/a scarf. On your leg, wear pants. On your arm, wear sleeves/an armband. It sucks to do this when you’re really hot, but I chose to instead of being stared at. (You may choose not to, and that’s fine, of course.)

Depending on what type of mark it is, and how sensitive you are, you may be able to use make-up.

slightmayhem said:

people can judge you as “looking contagious” from other chronic disabling conditions besides skin conditions.  CF, COPD or asthma for example can cause a chronic cough that might appear like pneumonia or another contagious cough.  Anxiety can manifest in chronic itching or skin picking which could be judged as head lice, etc.

Sometimes, it’s safer to lie about these conditions than to tell the truth and disclose (for example, if you are afraid of being outed at work, or if you are afraid of social backlash from a more chronic condition.) 

Or simply stating “it’s not contagious” will often work. 

dendriforming said:

Yep.

I wish “it’s not contagious” worked more reliably, though. I have CF, and I disclose to more people than I probably should, because a lot of people won’t stop pushing after I try that.

secretsofthedisabled said:

Both of you have excellent points. By the way, has “something’s caught in my throat, no biggie” worked for any chronic coughers?

tser said:

“Something’s caught in my throat,” wouldn’t work for my kind of cough. It’s huge, gagging, doubling me over for minutes on end, and has often ended with me throwing up in public. (Or wetting my pants. Yes I am admitting this in public on tumblr. Sorry for the TMI, but these are the realities people with disabilities face.)

In addition, so many times no one says anything, they just glare, or move away with a look of disgust, so I don’t feel like I can say anything.

This is something I’m dealing with a lot lately. Most people in the studio know it’s chronic and not contagious, but there’s one guy who looks at me, very pointedly, EVERY TIME I start coughing like, “So rude, why did you come to the studio SICK,” and “Ewwww.” And I always get THE LOOK on the bus. 

I get constant commentary like, “Summer cold?” “Do you have the flu?” along with people moving away, avoiding me like I have the plague, etc. I mean, I understand. Because of the chronic illness, I can’t afford to get Regular Sick myself, it could make me really really sick and end up in the hospital, so I am very careful to wash my hands, avoid people who are ill, and so on. I understand that no one ever wants to get sick, regardless of their general health status. I also understand people have specific phobias and OCD and similar disorders themselves that would make my cough terrifying to them.

But being ostracized all the time sucks. 

I had one clerk in Game Stop ask if I was turning into a zombie. I said no, it was a chronic condition, not contagious. He followed up with, “Okay. Well, are you going to bite me?” I said, “No, it doesn’t make me do that.” I know he was covering his fear with humor, but I felt humiliated. 

Not everyone assumes contagion, though sometimes it’s kind of amusing. I was resting this weekend on my walker at the side of the sidewalk, trying not to hack up a lung, and an eclectically dressed very loud woman, who had been swearing at various business people for not providing her with a staple gun, duct tape, or safety pins (seriously, she was ANGRY) as they walked by, suddenly stopped and said to me,

“VITAMIN C!”

I was like, “Wuh—*wheeze*-whha?”

“Vitamin C! Seriously, it’s an AUTOIMMUNE DISORDER. I should know. I had MS, I was in a wheelchair. VITAMIN C!”

I coughed and blinked and she yelled, “FEEL BETTER SISTER!” and darted across the road.

Well, I had consumed a cocktail of Airborne and Emergen-C that morning and guess what, I don’t have MS, so obviously it’s working. /sarcasm *lmao* 

techno4tomcats said:

People far too often mistake my slurred speech and poor motor control as drunkenness and it has gotten me into trouble a few times. (eg: someone calling the police because I was drunk and disorderly when in fact I have having an absence seizure) One time I was pinned out and shouted at which triggered a larger seizure from stress and panic. Was only when I started full out convulsing I was let go without being charged but I was yelled at and generally felt less than human.

I dont have any way of downplaying or fronting this, except having someone close by to assist me/reassure people I’m sick not stoned off my face.

I now have social anxiety at being alone in public spaces and i dont know how to overcome it. :/

secretsofthedisabled:

dendriforming:

slightmayhem:

secretsofthedisabled:

realsocialskills:

secretsofthedisabled:

SRS: Yellow

tw: ableism, staring at disabled people

realsocialskills:

I look contagious but I’m not. How do I tell people this? How do I get them to stop staring and stop being afraid they’ll catch my uncatchable condition?
realsocialskills said:
I don’t know, unfortunately. Do any of y’all have strategies for dealing with this?

secretsofthedisabled said:

My answer even now is cover up. That’s all I can do. I wish there was a better solution, sorry. If anyone has one, I’d love it.

(I’m also chiming in that wearing a t-shirt with my condition on it is highly uncomfortable and just not feasible.)

realsocialskills said:

What do you mean by cover up? Do you mean like, wearing a lot of clothing? Or something else?

secretsofthedisabled said

For example, if the mark is on your neck, wear high collars/a scarf. On your leg, wear pants. On your arm, wear sleeves/an armband. It sucks to do this when you’re really hot, but I chose to instead of being stared at. (You may choose not to, and that’s fine, of course.)

Depending on what type of mark it is, and how sensitive you are, you may be able to use make-up.

slightmayhem said:

people can judge you as “looking contagious” from other chronic disabling conditions besides skin conditions.  CF, COPD or asthma for example can cause a chronic cough that might appear like pneumonia or another contagious cough.  Anxiety can manifest in chronic itching or skin picking which could be judged as head lice, etc.

Sometimes, it’s safer to lie about these conditions than to tell the truth and disclose (for example, if you are afraid of being outed at work, or if you are afraid of social backlash from a more chronic condition.) 

Or simply stating “it’s not contagious” will often work. 

dendriforming said:

Yep.

I wish “it’s not contagious” worked more reliably, though. I have CF, and I disclose to more people than I probably should, because a lot of people won’t stop pushing after I try that.

secretsofthedisabled said:

Both of you have excellent points. By the way, has “something’s caught in my throat, no biggie” worked for any chronic coughers?

secretsofthedisabled:

realsocialskills:

secretsofthedisabled:

SRS: Yellow

tw: ableism, staring at disabled people

realsocialskills:

I look contagious but I’m not. How do I tell people this? How do I get them to stop staring and stop being afraid they’ll catch my uncatchable condition?
realsocialskills said:
I don’t know, unfortunately. Do any of y’all have strategies for dealing with this?

secretsofthedisabled said:

My answer even now is cover up. That’s all I can do. I wish there was a better solution, sorry. If anyone has one, I’d love it.

(I’m also chiming in that wearing a t-shirt with my condition on it is highly uncomfortable and just not feasible.)

realsocialskills said:

What do you mean by cover up? Do you mean like, wearing a lot of clothing? Or something else?

secretsofthedisabled said

For example, if the mark is on your neck, wear high collars/a scarf. On your leg, wear pants. On your arm, wear sleeves/an armband. It sucks to do this when you’re really hot, but I chose to instead of being stared at. (You may choose not to, and that’s fine, of course.)

Depending on what type of mark it is, and how sensitive you are, you may be able to use make-up.

bidyke:

❤ ❤ misandry ❤ ❤: Some examples of social violence against disabled folks

dadhomura:

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 social violence (and not blame it on the disability).

I didn’t include many examples though, which probably made the post more or less useless for people who don’t already know about such things

So here’s some kinds of social violence that are common for people with various disabilities:

Being asked invasive personal questions:

  • Detailed questions about their medical history
  • Questions like “What happened?” or “Why are you like that?”
  • Questions about how they have sex
  • Questions about how they use the bathroom
  • Unsolicited medical advice, often ridiculous (eg: “Have you tried veganism?”
  • Unsolicited and invasive prayers. Insinuating that they’d be cured if they had more faith

Not being believed:

  • Many wheelchair users can stand or walk a few steps. They’re often seen as faking their need for a wheelchair when they do
  • Some people like to test to see if people are blind by getting in their faces or doing inappropriate things in front of them
  • People try to trick AAC users by asking complicated questions in hope of tripping them up and proving that they’re not really communicating
  • Being told they’re just fat and if they’d lose weight they wouldn’t be disabled anymore
  • “You’re too young to need a cane”
  • Being told that something can’t really be a seizure trigger because it’s not flashing lights

Insults:

  • Being called the r-word implicitly or explicitly (happens to most people who are perceived as disabled, not just people with downs syndrome or other conditions that tend to cause intellectual disability)
  • Being told they’re a burden on society

Folks with service dogs:

  • People try to pet the dog
  • People ask invasive questions about the dog

Being treated like a young child:

  • “Where are your parents?”
  • “Should you be eating that?”
  • “You’re not flying alone, are you?”

There are a lot of other examples. This is not an exhaustive list.

frogsandrosbifs said:

Being told you can’t consider yourself disabled because some people have it so much worse than you, so you’re not really disabled since you can do the things you want. Courtesy to the shittiest psychologist on earth.

sappy-nirvana said

being told that you don’t need a wheelchair and arm crutches because “but you’ve had surgery and you’ve been walking since you were little!!” and also being told that you don’t have a disability.

“but you dont look disabled”

bidyke said:
  • Being doubted and perceived as spoiled or wanting to take advantage of people because they can’t see the barriers you’re facing.
  • Being perceived as rude or ungrateful when people offer you help you don’t need and refuse.
  • People telling you it’s all in your head and that all you need to do is change your attitude to be healthy.
  • People using ableist language and describing you and your body as broken, inferior, defected or unworthy.

"What he would have wanted"

sweetsweetsweetdivinething:

realsocialskills:

Talking about what someone would have wanted only makes sense if that person is dead.

If the person you’re talking about is still alive, talk about what they do want.

And assume that they want to live. Almost everyone does.

Even if they’re brain damaged, even if they’re in pain, even if they have dementia, even if they no longer recognize people.

They’re still a person. They’re still there. And they still want things.

So don’t ask what they would have wanted. Ask what they do want.

Before the cancer, my dad always said “I won’t be helpless. Just put a bullet in my head.“

That’s what he WOULD HAVE wanted.

Once he had cancer, he stayed in the hospital and was tube fed until he died. He met his previous definition of “helpless” for months, but complied with doctors’ orders to stay alive.

That’s what he DID want.

Don’t ever assume someone’s views haven’t changed with their circumstances.

That, too.