disability – Page 11 – Real Social Skills

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

March 17, 2014June 21, 2021 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.)

On figuring out what’s wrong

February 19, 2014June 21, 2021 Real Social Skills

A reader asked:

I don’t know what exactly is wrong with me (as a child, i was forbidden to even mention mental health or autism, and now it’s prolly too late to bother). But I find a lot of useful and relatable in this blog (that was thanks). Thing is, I end up just cutting all connections with society (aside from parents). Not leaving my home, being happy only in solitude. But I still need to provide for myself, so I do some coding. Except often I just can’t force myself to work for unknown reason. Any advice?

realsocialskills said:

First of all, it’s not too late to bother. Understanding yourself better is always helpful. It’s a lot easier to manage unusual things about yourself if you have the right words to describe them. Among other things, having the right words allows you to connect with others like you and learn about things that work for them.

Also, some mental health or neurological issues are treatable, even in adulthood. (For instance, many adults with depression, ADHD or OCD find that medication improves their lives).

Most of us spend most of our lives as adults. This stuff doesn’t go away when we grow up, and it doesn’t stop mattering, either. So – it’s not too late, and if you think that you have a mental health or neurological condition, it is worth taking that seriously, whether or not you pursue formal diagnosis or medical treatment.

I can’t tell you why you’re having trouble working. There could be any number of reasons. Some include:

Do you like your work?

If your work requires a lot of intense focus, and you find it intensely dull, it’s likely to be hard to make yourself do it, particularly if no one else is around
If you’re so bored with your work that you regularly can’t force yourself to do it, it’s probably time to start trying to find different work
Which might still be coding if that’s your skillset – not all programming projects are the same
There’s only so long you can work against yourself by brute force

Is being alone all the time bad for your work?

Some people need to work with or alongside other people in order to get stuff done consistently
Not everyone is like this, but some people are, even many people who enjoy solitude
If that’s part of your problem, it might be important to work on ways to have company that you can stand
This could be virtual, like one person you’re on IM with while you code
Or physical, like working out of an office or hackerspace
It doesn’t necessarily need to be intensely social
This might not be a problem you have, but it is a problem some people have

Are you depressed?

If being unable to force yourself to code is a new problem, it’s possible that you’re depressed
Particularly if you’re also *generally* disinterested in most things you used to like
For some people, depression is a treatable medical problem
If that sounds likely to be part of your problem, and if you can go to a doctor safely, it might be worth bringing up the possibility that you’re depressed

Do you need better cognitive cues for work?

For some people who work alone from home, it can be really hard to *tell* when you should be working
I have this problem and I don’t have a great solution to it, so I’m not sure how much I can suggest
For some people, making a schedule helps
For some people, always working early in the day helps
For some people, using LeechBlock makes it easier to focus
Some people find that HabitRPG helps them to keep track of tasks and stay motivated

Are you ok physically?

It’s hard to work when you feel horrible physically
And a lot of neurodivergent people have trouble telling when something is wrong physically
Do you eat enough? Do you get your nutritional needs met? Going without sufficient protein or iron can quickly make everything difficult.
Do you remember to drink liquids?
Are you in pain?
Is your working environment comfortable? (eg: are the lights bothering you? is your chair painful to sit in? is your keyboard at a comfortable or uncomfortable height?)

Disability pity

January 10, 2014June 21, 2021 Real Social Skills

A reader asked:

I heard that disabled people dislike getting sympathy, and I had trouble understanding that. But then later I was somewhat disabled, and received some unwanted sympathy, and I found it really horrible. I had a very strong feeling, maybe it could be called humiliation.

So then I understood; but I don’t know how to explain that to people who haven’t experienced it. My theory: people like sympathy if something bad has just happened, but if it’s long-term then it’s normal for them.

realsocialskills said:

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

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

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

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

“I can’t” is an important phrase

December 19, 2013June 14, 2021 Real Social Skills

A reader asked:

… I think it’s more empowering to say “I decided to stop” than to say “I can’t”. It’s OK to stop when there’s still a tiny chance that you might have been able to succeed.

realsocialskills answered

There are different reasons why people decide to stop doing things.

One reason is that they reach the conclusion that they probably aren’t capable of doing the thing. Probably

That’s different than reaching the conclusion that they don’t want to do it, or that it’s not worth doing, or that they’d rather do something else.

Actually this reminds me of something I’ve seen – often disabled kids who can’t do something will pretend that they’re refusing to do the thing. And that they’re refusing to do the thing on purpose in order to provoke the teachers. When everyone involved thinks that’s what’s happening, things can get really bad really quickly.

(Particularly if the thing is something like a kid going nonverbal and pretending that they’re refusing to speak and are just making animal noises to be rude).

Inability to do things is real, and it’s important for people to know their limits and take them seriously.

Acknowledging limits makes it much more possible to do things than pretending not to have any.

Ignoring reality isn’t empowering.

And it’s legitimate to say “I can’t” when what you mean is “it’s possible that I might technically be able to do it, but it’s risky and dangerous, and I couldn’t function if I took that kind of risk routinely”.

(This is in fact a meaning of “can’t” used by people without disabilities all the time.)

Some thoughts on PTSD at school

November 22, 2013June 21, 2021 Real Social Skills

A reader asked:

I developed PTSD last year and took time off college, and I’m about to go back for the first time since then. I’ve been auditing classes for a few months now though and I’m suddenly terrified. I can barely read anymore (I can’t focus and it’s often panic inducing). I dissociate in class and sometimes even have highly humiliating episodes in lectures. I never retain anything and it feels futile and I’m afraid I’m gonna flunk out. If you have any advice I would appreciate it so much. Thank you!!

realsocialskills answered:

Since I don’t know you, all I can do is guess – but here are a couple of possibilities that comes to mind:

Do you find evaluation triggering? Like, tests, quizzes, papers, things where you have to prove that you mastered the material? Or knowing that you’re being graded?

If so, I wonder if maybe a full course load might be too much for you right now. Being terrified is exhausting and time consuming. So is dealing with being triggered a lot. That plus a full course load might be taking up more time than you have.

It might be better to start by only taking one course for credit. That could give you space to work on figuring out what’s triggering and how to deal with it.

Another possibility: If you’re missing material because you dissociate in class, you might be able to get a notetaker as a disability accommodation. Or you might try recording the lectures (which is a disability accommodation you can get even if recording isn’t normally allowed). Similarly, if you find a particular *kind* of assessment triggering, you might be able to arrange a modified form (eg: if taking a quiz in-class causes you to dissociate, you might be able to arrange to do a take-home instead.)

You might also try collaborative note taking:

It’s a good strategy for anyone to try who is having trouble paying attention in lecture
But it might also be helpful for you if your episodes are the kind someone can help you avert if you see one coming on
Because then you’d already be communicating with your notetaking partner, so if you see a problem coming it might give your the opportunity to get help

Another possibility: Are you dealing with a triggering or cognitively incompatible teacher?

For some people, teachers who teach in certain ways can be triggering
Or can be so hard to understand that they exhaust you in ways that take away the cognitive abilities you need to do school
Or can be hostile to you in subtle but intensely destructive ways
Or any number of other serious points of incompatibility
If you’re having a debilitating reaction to a particular teacher, it’s probably really important to not take classes with that teacher, even if it looks like a good idea on paper

(There’s a range of different things that work for different people, so it would also be good to seek out different perspectives.)

When you’re without a diagnosis and not sure whether or not to describe yourself as disabled

November 3, 2013June 21, 2021 Real Social Skills

A reader asked:

I don’t really know how to say this the best way, but apparently I “might” have Aspergers. I had been having some trouble at college, and the woman we spoke to at disabilities services said that “clearly, something isn’t connecting here.”

But instead of getting me diagnosed or anything, everyone just kind of ignored it after that? The whole thing was really confusing. I don’t want to claim disability if I don’t have one, but I might have one, but I might not. I just don’t really know what to do

realsocialskills said:

That’s a hard place to be. It can be really hard when you think you might have a disability but you’re not sure. Especially when it’s a developmental disability and you are only starting to realize in adulthood that you might have it.

Several things I think help in this situation:

Take the problems you are having seriously:

You are having trouble, and that matters
You are not faking it
You are not being appropriative
It’s ok not to be sure exactly what’s going on
It’s important to take your needs seriously and to work on figuring out what would help
Keep in mind that whatever is going on, your needs matter

Whether or not you’re autistic, things written by and for autistic people might help you:

It’s ok to use them whether or not you’re autistic
The point is to do things that help you understand yourself and function well in the world, and that will involve learning from a lot of people
People with different kinds of disabilities and differences have substantially overlapping experiences, and it’s ok and important to learn from one another’s communities
One thing that might be particularly helpful is a guide the Autistic Self Advocacy Network made called Navigating College. It has a lot of really helpful practical suggestions
It’s probably a good idea to look at stuff written by and for people with other kinds of disabilities too (particularly ADHD, dyspraxia, dyslexia, and depression, but a surprising number of things end up being helpful to know about cross-disability)

It helps to identify specific things you’re having trouble with, for instance:

Are you having trouble reading?
Are you having trouble paying attention?
Do you get stuck trying to figure out what you should be doing?
Are you forgetting to eat?
Are you having sensory problems?
Is handwriting difficult for you?
Are you having trouble speaking, or processing speech quickly enough to participate in conversations?
Is it hard for you to navigate and get yourself to where you need to be?
Do you have problems planning projects?
Other things?

It’s helpful to identify the specific things you’re having trouble with, for several reasons:

There is a lot that people know about how to help with specific problems.
For instance, if reading is an issue for you, changing the font, using audio books, or using ebooks rather than print books might help.
Knowing a diagnostic label can be very helpful, especially in identifying people similar to you who might understand
But it’s even more important to figure out what you’re having trouble with in practical terms, and what can help
The tests doctors and specialists use to diagnose learning disabilities tend to paint a very broad brush, and they don’t necessarily give you great information on what exactly is going on or what would help
The more specific you can be about what’s going on, the more likely it is that people will be able to help you

If you’re in college, seeking formal evaluation and diagnosis is probably a good idea:

It is far easier to get schools to make accommodations if you have a diagnosis
There are a lot of fairly standard modifications that schools are used to making, but which they are generally only willing to make if a doctor recommends that they do so
And whether or not you disclose to individual professors is still your choice
There are downsides to diagnosis, but the advantages probably outweigh them in your situation

Don’t wait for diagnosis, though:

Diagnosis is a tool, not a solution
It can help you, but it won’t make things go away
There are problems you can solve now
And diagnosis is more helpful if you already know some things that would help you, because often doctors won’t think to put things in their report unless you suggest them
Working on living with a disability or even just a difference is a lifelong process.
And ultimately, you have to figure out for yourself how to manage that, and you shouldn’t wait for anyone’s permission

Don’t worry about being appropraitive or falsely claiming disability:

Whatever is going on, your problems are real and you should take them seriously
It’s ok to suspect that you might have an autism spectrum disorder and be wrong; that doesn’t hurt anyone
Figuring things out has to start somewhere, and it’s ok if you have to think through several possibilities to get the right words for yourself
The important thing is that you figure out what is going on and what can help you
That can be really difficult and scary, but it also makes life a lot better

Good luck. You’re in a scary place, but it’s possible to figure things out and get through this. You will be ok.

The power of “I can’t”

October 26, 2013June 14, 2021 Real Social Skills

People will try to tell you that you can do things you can’t do.

It’s hard to insist that no, you can’t do them. Or that you can’t do them safely. Or that you can’t do them without using up all your spoons and losing the capacity to do things that are more important.

They will tell you that this is giving up, or being lazy. They will tell you this with their words and their body language. And by pretending that you have not said anything, and just refusing to take into account your actual abilities.

They will tell you this with hate. They will tell you this with good intentions. They will tell you this as concern trolls and terrified parents.

Sometimes, in that situation, it’s easy to feel like you aren’t allowed to say no until you’ve run yourself into the ground trying, or until you’ve tried and failed and things have gone badly wrong. Because people won’t believe you, and will put pressure on you in all kinds of ways.

The thing is, they’re wrong, and you don’t have to believe them or comply with their demands.

It helps a lot to be confident in your ability to judge what you can and can’t do. Sometimes you have to say no over and over.

Knowing ahead of time that something won’t work for you and insisting on planning accordingly isn’t lazy.

It’s being responsible.

Some signs that a place might be an institution

October 22, 2013June 14, 2021 Real Social Skills

Lack of accomodation for disability:

An organization workign with disabled or elderly or sick people ought to have a clue about access and adaptability
If they don’t, it’s a major red flag
Some examples:
If there are a lot of people who need wheelchairs, and none of them have personally-fitted chairs, that’s a red flag. If everyone is using an institutional wheelchair, it’s probably an institution
If there are a lot of residents who have limited use of their hands, and no one has any adaptive equipment for doing things like changing TV channels, it’s probably an institution

People conflate patient/client opinions with family opinions

For instance, if they claim that everyone there wants to be, but then they only talk about what family members say about it
If it’s a place people can be put into by their family members without any attempt made to see if they consent
If all the information on a website is for family members or social workers, and none of it is directed at people who might live in or get services from a place, it’s probably an institution

If people need staff assistance or permission to contact the outside world

If people who can use phones independently don’t have access to phones without asking first, it’s probably an institution
If there are no computers available, or all the computers are in public places, it’s probably an institution
If you need a password for the wifi and the residents don’t have the password, it’s probably an institution
If nobody has a personal cell phone, landline, or computer, it’s probably an institution

Concepts of functioning levels

If a place claims to be a last resort for people who can’t function in a normal setting, it’s probably an institution and it’s probably doing horrible things

Bragging about mundane things as evidence of being wonderful places:

It’s very common for institutions to loudly proclaim that they have a pool, TVs, a barber shop, a charity shop people can work in, or other such things
If they think this is deeply impressive, something is wrong
Things that wouldn’t be particularly notable in an apartment building or neighborhood shouldn’t be particularly notable just because elderly or disabled people are involved
If people think they are, it’s probably an institution, and it’s probably intentionally confusing clients about what it means to be free and in the community

If people involved are required to regularly praise it

Everyone is disgruntled with workplaces or other aspects of their life sometimes
Free people express this sometimes
If everyone involved in an organization says it’s wonderful, and you can’t find anything people it serves are willing to complain about, something is wrong
This is particularly the case if the wall or website is full of testimonials about how great it is
And also particularly the case if people are regularly required to sing songs praising the place

If there isn’t serious regard for the privacy of people the organization serves

For instance, if there is a description of every single resident and their activities available on a public website, something is wrong
If you are brought into someone’s room without their freely given consent just so you can see what the rooms look like, it’s probably an institution

Intrusive questions when you work with the public

September 23, 2013June 21, 2021 Real Social Skills

A reader asked:

I was wondering if you or your readers might have some advice. I have very poor balance and a pronounced limp due to a life-threatening illness and I work with the public. They comment on it, often asking what happened. It’s motivated by concern, but it’s embarrassing(I literally make people sad just by leaving the house) and I don’t know how to respond (do they think it’s going to be a funny story?). I think I’m bad for business and could quit if I really wanted. How do I deal with this issue?

Realsocialskills answered:

I don’t know. I have a couple of guesses based on things I and friends have experienced. I think many readers of this blog are more qualified to answer this than I am.

Here are my guesses:

Keep in mind that working with the public doesn’t mean you anyone an explanation of your health issues:

Just because someone asks doesn’t mean you have to explain
If you give an answer, it doesn’t have to be accurate
It’s your business and not theirs

Sometimes people aren’t actually looking for information. Sometimes they just want reassurance that they’re not supposed to be rescuing you.

For people like that, it might help to say something like “Don’t worry; I’m used to it.”

Some people are obnoxious nosy jerks, and I don’t know of any good approaches to them. The best I’ve seen is pretending they haven’t said what they’ve said, or else telling them in plain language to knock it off.

It might be better to say something like “Don’t worry, I’m used to it.” Sometimes what people want isn’t information; they sometimes really just want reassurance that there isn’t anything they should be doing to fix it.
Or something obviously absurd like “I’m recovering from a zombie attack.”
It’s also ok to say “That’s a rather personal question.” That probably works better with colleagues or in social situations than when working with the public, though.

It also might help to change the subject to something that’s actually on topic for your job. It’s possible that what they really want is reassurance that it’s ok for them to be asking you to help them even though you look sick. Eg:

“You look like you’re falling over. Are you ok? What’s wrong?”
“I’m fine. Can I help you select some sunglasses? There’s a sale on women’s styles this week.”

Anyway, those are my guesses. Any of y’all have more informed advice?