Thoughts on aging, assisted living, and death

Real Social Skills

When people age, they often move to assisted living facilities, either by their own choice or in response to outside pressure. Often, these facilities present themselves as being basically just like living in your own apartment, except that they clean for you, provide meals, and offer enjoyable activities.

And, when people first move in, this is generally true. People who can do the activities of daily living without help retain control over their lives, can come and go as they please, and live very similarly to people who live in their own places. But as residents age, they loose physical and cognitive abilities, and often lose control over their lives. What once looked like an apartment can look like an institution really quickly when you start to need more help.

On TV, we never see aging or death depicted very accurately. People who die on TV don’t decline over time, they’re just there until they’re not, and sometimes they look perfectly healthy in a hospital bed before they aren’t there. And sometimes, not being there isn’t dying, sometimes it’s being put into a home.
Real death is not like that. Real death is not usually sudden. People who die of old age normally become disabled first. On TV, when you become disabled enough for it to matter, you disappear. In real life, you are still there, you are still a person, and you still care about your life.
So, if you’re old enough to be considering moving into an assisted living facility, you’re old enough that you need to plan for what will happen as you become more disabled. Don’t assume that the people who run your residence will know what to do; you will be better off if you make the decisions rather than outsourcing them to other people.
On valuing your life:
If you are old, people might pressure you to refuse treatment for medical conditions you have so that you will die sooner. They might euphemistically call this dying naturally or not prolonging the dying process. But there’s nothing unnatural about using a feeding tube, treating an infection, or any number of other things people might try to talk you out of. Do not get all of your medical information from people who see the world this way. Medical decisions are yours to make, and make sure that the people advising you on your care believe that your life is worth living.
Pay attention to the disability community as well as the aging community. Some people feel like they would rather die than come to be impaired in a way they’re dreading. Hearing the voices of people who live with those impairments and value their lives will make it much, much easier for you to get past that fear.  Everything you face physically as you age is something that some disabled folks live with long-term. They know a lot about how to be disabled and still be free, self-respecting, and live. Disabled adults who live free lives and avoid nursing homes have had to gain a lot of skills that you are going to need. Not all of what they know has reached the aging community. Learn from both.
In particular: There’s a lot of fear and misinformation about feeding tubes. When people ask you to fill out a form indicating which treatment you do and don’t want, feeding tubes are one of the first things they ask about. People often see eating with a feeding tube as something like being a zombie, being undead, and living an unacceptable life. But feeding tubes are really just a way to eat and stay alive if you can’t use your mouth to eat. Similarly, breathing support is just a way to breathe. It doesn’t make you a zombie. It lets you stay alive and gives you more time to live and love and care about things.
Questions to consider:
  • When I am no longer able to walk as far as I want to go, how will I get a good wheelchair and learn how to use it?
  • If I lose the ability to speak, how will I communicate?
  • If I develop dementia, how will I communicate as I decline cognitively? What do I need to do now to make sure that if I develop dementia, I will still be treated like a person?
  • If I need assistance in the activities of daily living, will I still be able to decide how and when to do them, or will those decisions be governed by staff convenience?
  • If others decide that I am a fall risk, will I still be able to make my own decisions about when and how to get out of bed, and whether to use a bed alarm?
Just, generally speaking – your life does not end when you become disabled. It just changes. When you become disabled, your life will still be worth living, and you will still care what happens to you. Don’t let anyone talk you into devaluing it, and plan to keep your freedom.

To the creepy guy who reblogged the post about creepy guys

Real Social Skills

Someone commented on my post About Creepy Guys with a comment along the lines of:

“LOL. I guess there’s no safe place for men to flirt with women anymore, unless they’re attractive guys.”

Quote over.

That’s a creepy comment.

Here’s why it’s creepy. My post was about how it’s unsafe for women to reject unwanted attention, because men hit on them in ways that leave them no polite way to say no. Because men are allowed to implictly threaten women with impunity in public, and women who tell them off are seen as rude or otherwise bad.

If by safe, you mean places in which your attentions are guaranteed to be welcome, then no, there is no safe place and there should not be a safe place. Women are allowed to be uninterested.

Consensual flirtation is an offer. It isn’t a negotiation. It isn’t an attempt to pressure a woman into saying yes or convince her to do something.

If you’re continuing the conversation after someone has made it clear that you want them to stop, you’re being creepy.

If you’re flirting with someone in a place they can’t easily walk away from you, you’re being creepy. No one should ever be a captive audience for flirting.

If you take no as a humiliating personal insult, you’re being creepy. No is the default. Most people aren’t going to want to date you or sleep with you. They are not wronging you by being uninterested.

It’s true that hot guys tend to get away with a lot of things they shouldn’t. It’s harder to tell that someone has no regard for consent when you want the things they want you to want. It’s easier for people to tell that you’re being creepy if they aren’t attracted to you.

That doesn’t mean it’s ok to be creepy, or that women are wronging you by being creeped out. It means there’s a bad thing you need to stop doing even though some people get away with it.

On being triggered by infodumping

Real Social Skills
A reader asked:
I have a really odd question, and this probably wouldn’t of help to anyone else (I am the only person I’ve EVER heard of this happening to) but do you have any advice for NT people about how to deal with autistic infodumps? I’m really really sorry if this is the wrong place to ask, but you’re the only blog I’ve found that even remotely deals with this sort of thing. Trouble is, they trigger me sometimes.
I have an emotionally abusive father who I’m about 90% sure has aspergers and starting when I was really little, he would take me places in the car and just drive in circles for hours and talk at me. Sometimes about something he thought I’d did wrong, sometimes just about his interests. He’d never let me go home or let me join in the conversation; and I could never get him to quit. I literally could never get away and ended up feeling really trapped. Trouble is, I now have an autistic fiance who enjoys talking to me about his interests.
I know he’s doing it innocently and I don’t want to take away something he enjoys, but at times he can go on really long and I start panicking- and, I’m pretty sure; being triggered. How can I politely exit from a conversation like that without hurting his feelings? It isn’t my fiance’s fault, and I’m probably making too big a deal out of this, but IDK I thought you might have some useful suggestions.
realsocialskills said:
First of all, your needs matter. You are not making too big a deal about this. (And I actually think this is probably more common than you realize).
He might not be doing anything inherently wrong, but the situation is not ok for you, and you’re going to have to figure out together how to make it better.  I don’t think there’s a pre-existing way to politely exit from a conversation with him; I think that this is a problem that you and your partner will have to work out a solution to together.
You’re probably going to have to hurt his feelings, at least in the short term. Not because he is doing anything wrong, but because this is a touchy subject for autistic people. Most of us have been treated horribly for having focused interests and infodumping about them. Having other people express boundaries about infodumping can hurt a lot; it can even be triggering.
But people are still allowed to have boundaries about how much they are willing to listen to us go on about our interests, and we have to be able to negotiate that in close relationships. Even when it hurts to think about. Even though it’s triggering sometimes.
Telling your partner that his infodumping hurts you sometimes will probably be a very difficult conversation for both of you. It will probably be complicated figuring out how to negotiate boundaries that work for both of you.
But it’s an important conversation to have, and it probably won’t be the last issue in which you need to have a difficult conversation about something that is loaded for both of you. That’s part of the work of an intimate relationship, particularly when both partners have triggers.
Some things that I think might help:
Make it clear that you don’t see his interests as the problem:
  • A lot of autistic people have been subjected to a lot of pressure to give up our interests, or stop being so focused on them
  • If you’re asking to negotiate boundaries about discussing the interests, it’s really easy for that to feel like rejection or like you are disgusted by him liking things
  • So, if you don’t see it that way, *say so*
  • (If you do see his interests as the problem, that’s a different problem and I’m not sure what to suggest)
Think through what your needs are:
  • What do you need once you get triggered? A subject change? Being by yourself for awhile? Reassurance? Being explicitly reminded that your partner doesn’t see you as an infodump-recieving object? Food? Something else?
  • What would help you to avoid getting triggered? Being able to change the subject easily? Avoiding certain topics when you’re in the car? Something else?
Agree on a way to signal that you need to change the subject:
  • If you’re getting triggered, particularly if you have a compliance trigger, it’s important to figure out a way to communicate that you’re not ok
  • It might be good to have a rule about him checking in periodically about how you’re doing in a long conversation about something he’s really into
  • Or to try to identify explicitly what the signs are that you are being triggered (eg: when you’re not ok, do you go quiet? Do you start agreeing to everything? Does your body language change? Something else), and ask him to pay attention to whether you’re doing those things and check in with you if he sees them
  • It also might be good to agree on a specific thing you will say or a specific gesture you need to make if you need to change the subject.
Listen to what he has to say about this and what his needs are:
  • He’s going to have thoughts about this
  • Some of them might hurt to hear, or might be scary or triggering given your history
  • And this isn’t going to have a simple solution where you mentioning the problem makes it go away
  • It’s important to listen to his perspective and think through together what’s going to work for both of you

I think this is probably something you can work out if you both act in good faith. (Not guaranteed; some people aren’t compatible in this area through no fault of their own. But from what you’ve said it sounds possible to work out).

Computer games to teach boundaries?

Real Social Skills
sighsexual asked:
I love this blog so, so, so much and I am so happy it exists. I go to school for special education and game design and I have devoted a large portion of my life working with children with specific needs, helping them to learn new tricks to feel more included and comfortable in social spaces. I was eventually hoping to create a video game that would help to teach these very concepts, as well. I’d love to hear your thoughts on that, if you wouldn’t mind sharing ^_^
realsocialskills said:
I don’t know huge amounts about game design, but I’ve wondered if there’s a way to use games to teach people about boundaries.
Maybe you could make a game about saying no?
And I’m not talking about “say no to drugs” or “resist peer pressure to do things adults think you shouldn’t” or any of that. I’m talking about figuring out what you want, and saying no when you don’t want that thing.
I think it might help to make a list of situations in which people might be pressured into making choices one way or the other. Like:
  • when adults want you to be friends with someone
  • when people want to play with you
  • when someone wants to borrow your toy
  • when someone wants your phone number
  • when someone wants to be your girlfriend/boyfriend
  • when someone wants a hug

And then make game situations involving those things? This would be hard to write, but I bet it could be done. (One reason it would be hard to write is that saying no doesn’t always work even when you have every right to say no, and it’s important not to teach kids that it’s their fault when they can’t make people stop hurting them.)

It’s really, really important for people to be able to assert boundaries. And people with disabilities are often taught from early childhood that they aren’t allowed to have any boundaries, dislike anything, or say no.

On the right to communicate

Real Social Skills

all-women-kick-ass asked:

Is the word “stupid” ableist? I keep trying to explain to people that it’s a really important word for a really important concept but I can’t seem to put into words WHAT exactly that concept is.

realsocialskills said:

I don’t think “stupid” is an ableist word, and I’ve also been struggling to explain why. At some point I’ll write about that in more detail. I have not yet been able to do so, so this is not that post.

But I want to address something else that I see in your question. I think that, to an extent, what you are asking is more along the lines of:

  • Everyone is telling me a word I use is a bad word
  • I have something to say that I think is important
  • I can’t say it without using that word
  • And I can’t explain why that word is important
  • And people are upset with me
  • Is it ok for me to keep using the word anyway, or should I shut up about the thing until I can explain why I need that word?

And my answer here is:

I think that it is almost never a good idea to give up using a word that you feel like you need. I think you should probably keep using that word, unless you are able to find an alternative that still allows you to communicate the concept that is important to you.

Sometimes when people feel overly attached to a bad word because they are attached to expressing the bigotry associated with that word. If you’re worried that might be the case with you, work on addressing that. If that’s the problem, becoming less bigoted will probably make you less inclined to use the word anyway. If you stay bigoted, changing the word you use is unlikely to help.

You can’t avoid this issue by just saying that you don’t mean it that way. It has to actually be true. And, if you’re using a word that a lot of people object to, it’s worth considering whether you’re actually saying something worse than you think you’re saying.

That said, sometimes bigotry or hatred has nothing to do with why you feel like you need a word other people want you to stop saying. Sometimes you feel like you need the word *because you actually do*. Take that possibility seriously; don’t let people pressure you out of communicating.

And, as you consider these things, keep in mind the difference between basic morality and personal piety.

There may be worthwhile attempts to move away from certain words that you are not in a position to participate in, because you might not be able to give up those words without damaging your communication.

I think that people should use whatever words they need to use in order be able to communicate.

Words matter. But communication matters more. Don’t give up words you depend on to communicate clearly lightly.

A problem in discussing feminist issues

Real Social Skills

I don’t know a solution to this. I think it’s a serious problem, but I don’t know how to talk about it in a good way.

Feminist issues can get really, really hard to talk about.

There are a lot of forms of abuse that play out in a gendered way fueled by misogyny, that have some of these attributes:

  • They’re usually done to women by men (eg: rape; stalking; sexual harassment at work)
  • Almost all of the people directly affected by them are women or girls (eg: the overwhelming majority of people who need to have abortions are women or girls)
  • They are almost always motivated by misogyny 
  • There’s a pattern of misogyny that enables them to happen
  • Most of the culture is dedicated to denying this
  • People really, really pressure everyone to pretend this isn’t a misogynistic pattern

But, for all of these things, there’s also this:

  • Some of the abusers are women (eg: there are female rapists and stalkers)
  • The same thing, or a similar thing, happens to men (there are male rape and stalking victims)
  • Some people who are affected by the things aren’t women (eg: intersex folks who can get pregnant also need access to contraception and abortion and reproductive healthcare, so do trans men and nonbinary folks who can get pregnant)
  • Some people are taught they have no right to say no for reasons other than gender (for instance, this routinely happens to both boys and girls with disabilities)

That creates a complicated problem. Here’s one aspect of it:

  • People who are harmed by these things other than as a form of male-on-female abuse tend to be erased
  • And often even don’t realize that the things that happened to them actually happened, or that it’s ok to take them seriously
  • And often the only things that they have access to are things that implicitly or even emphatically describe this as something that ONLY happens to women and is ONLY done by men
  • For instance, most of the books about learning to have boundaries are women’s self-help books written in a way that suggests that being taught not to have boundaries is always mostly the result of growing up socially perceived as female a misogynistic culture
  • And it can be hard for trans people of any gender to get anatomically appropriate medical care without facing unbearable hostility to their gender identity
  • Or for female victims of female abusers to find supportive spaces, since many women’s spaces assume that men are dangerous and women are safe
  • This can be awful situations to be in, and exposure to some kinds of feminist discourse can make it worse for people who experience this pattern of abuse in a way that doesn’t fit this model

Here’s another aspect of the problem:

  • The pattern of misogyny that creates the male-on-female forms of the abuse is very much a real thing
  • And a lot of people don’t want it to be talked about, ever (eg: MRAs, people who want to say that women are just imagining everything and that really men have it just as bad if not worse, etc)
  • And some of them use other kinds of victims as pawns. And use them to say that it’s wrong to talk about women’s issues or patterns of misogyny, because there are exceptions
  • And that’s a seriously messed up form of derailing, because misogyny is real and so are the patterns feminism describes. Gendered patterns are real, and important to talk about, even though similar things happen in ways that don’t fit those patterns
  • And, more often than not, the people saying these things don’t actually care about victims who don’t fit the patterns – they often don’t ever talk about them except to derail feminist conversations

And another aspect:

  • Sometimes people who talk about lack of representation are totally sincere
  • They often get accused of derailing when they’re not remotely doing so
  • They’re interpreted this way by people who want to derail the conversation *and* by people who want to prevent it from being derailed
  • This can make it hard for these people to ever have any space to talk about their experiences
  • Or things that contributed to them
  • Or patterns of ways they happen
  • Or ways to fight these patterns and protect people

The result ends up being that there’s some people who tend to get overlooked or shouted down by just about everyone. I don’t know a good solution to this. I think noticing the pattern might be a starting place. I wish I knew more to do about it.

On feeling like you have no right to call yourself disabled

Real Social Skills
A reader asked:
I have depression and OCD, and I keep feeling like I don’t have the right to consider myself disabled or seek accommodation 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.

Thoughts on noticing disability experiences

Real Social Skills
A reader asked:
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.

A shorter version of the last post

Real Social Skills

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 or ~nice ladies~ or others that they are hurting us. And triple especially, we learn that we are not allowed to be angry because that’s ~just the way it is~ and ~people don’t understand~.

I think that protecting abled people from having to notice disability and ways we are harmed as disabled people goes so deep we do it automatically and without noticing most of the time. And abled people *really* don’t notice, because they think it’s normal and natural and have not had any need to challenge it. They feel completely entitled not to have to deal with disability, and the entitlement feels so natural that they don’t even *notice*. And we don’t notice how much we protect them, either.

I’m not sure what to do about that, but I think it’s worth figuring out how to get past it.

When it takes a long time for someone’s ableism to become apparent

Real Social Skills
A reader asked:
I’m physically disabled, and it seems like it usually takes abled people i become friends with a LONG time to “show their true colors” about it. I’ve seen it take 2 years from the first time they knew i was disabled and I openly spoke about it around them. Is this common? Why the heck so long?? Are they actively trying to hide it….or am i just missing a lot of subtle red flags? (Hard to imagine since @ this point I actively watch for them, but anything’s possible!)
realsocialskills said:
I’ve been wondering about this recently, too. I mostly encounter it in professional contexts (and I’m not sure whether to describe my disabilities as physical or not since autism affects my movement in disabling ways but I’m not mobility-impaired), but I think it’s a similar dynamic.
I think that it’s that abled people really, really don’t know very much about disability. They don’t know about the sheer logistical challenges we face, and they *really* don’t know about the stigma.
They think, on some level, that disability is an overwhelming tragedy, and that if we do things other than be overwhelmed by tragedy, then disability can’t really matter much. And they are really, really not emotionally prepared to deal with the fact that disability matters all the time, and they’re not at all prepared to deal with it in a matter-of-fact way. And meanwhile, for us, it’s just *life*.
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 or ~nice ladies~ or others that they are hurting us. And triple especially, we learn that we are not allowed to be angry because that’s ~just the way it is~ and ~people don’t understand~.
I think that protecting abled people from having to notice disability and ways we are harmed as disabled people goes so deep we do it automatically and without noticing most of the time. And abled people *really* don’t notice, because they think it’s normal and natural and have not had any need to challenge it. They feel completely entitled not to have to deal with disability, and the entitlement feels so natural that they don’t even *notice*. And we don’t notice how much we protect them, either.
Some of the people we protect have been exposed to a lot of disability awareness and sensitivity training. And who can recite a lot of information about various conditions, know not to pet service dogs, and would never touch someone’s mobility equipment, and who tell others off for using the r-word. And maybe they know what the ADA is and know a few horror stories about institutions in the 60s. And, they think that means they know how it is – they have no idea how sanitized all of that is.
Sensitivity training teaches them that we are just like them. It does not teach them to cope with all the ways in which we are very different.
I don’t have a good answer to this. The only that I’ve found is that it helps to be more open with my friends about what I am experiencing, what my limitations are, and how I feel about what is going on. There’s a price I pay for that, though. The other thing that helps is having more disabled friends, or friends who understand being marginalized in a way that your family is not (eg: I’ve found that some nondisabled LGBTQ people have been able to relate to a lot of this.)