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12:14pm
July 5, 2015
➸ Think You Need a Kosher Scooter? | Jewniverse
Okay wow, someone responded to that by saying “By finding ways to get around Shabbat laws are you really keeping Shabbat?” That really pisses me off. We’re talking about someone’s ability to walk, here. Or their ability to use a communication device (I’ve seen communication devices with a delay inserted into the works so that they are usable on Shabbat). We’re not talking about people doing unnecessary work. It would be like if someone cut your legs off every Shabbat and told you that by trying to get your legs back you were breaking Shabbat. Or if they cut out your voice box every Shabbat, same deal. People finding ways to use assistive technology without violating religious restrictions should not be treated as if they’re just taking the easy way out or something. FFS that reply pissed me off.
(I’m not Jewish, but I’ve known a lot of observantly Jewish disabled people who needed modifications to adaptive equipment so they could still use it on Shabbat. And I can’t make myself see that as against the spirit of the Shabbat restrictions at all.)
4:31pm
May 19, 2015
FYI
I heard about medical scribes on the radio earlier this week. Apparently, pay is decent, it is a growth field, and a lot of the job involves sitting quietly in the back of the room taking notes on a laptop, not talking, and making facial expressions as little as possible no matter what happens. Some of you might want to check that out.
Wow. Makes me wish I was well enough to work. Well a lot of things make me wish that. But when I go through the hospital and get different procedures, I get to see a lot of different people doing their jobs, to make the hospital run, and it takes so many different sorts of skills and different sorts of people. I often think I’d enjoy working in radiology in some capacity. But seriously, I get annoyed with medical TV shows that glorify doctors and make it sound like nobody else in the hospital exists, barely. When, doctors do really important work, but the everyday work of cleaning, patient care, doing x-rays and other tests, drawing blood, etc., is all done by an army of people who rarely get any airtime at all, even though as a patient you see nurses and LNAs and respiratory therapists and radiology technicians far more often than you see doctors.
I still badly need to write my thank-you note to the housekeeping department. And to the nursing/LNA staff on a few wards that did amazing care in the last few hospital stays. Good nursing staff can make or break a “good” hospitalization.
1:24pm
May 4, 2015
There is nothing wrong with your stutter.
Order the meal you actually want.
Stick up your hand and ask your question.
Phone and make an appointment.
Take the drive through.
Ask a stranger instead of google.
Volunteer to give the presentation.
Speak.
Be bold. Be inconvenient. Be proud.
And when they look away, stutter louder. When they giggle or stare or ignore, stutter louder still.
Your voice is beautiful, it is irreplaceable, and it deserves as much space and attention as any other voice on the planet.
There is nothing wrong with your voice. Your stutter deserves to be heard.
8:59pm
April 22, 2015
I’m already a cyborg.
GJ feeding tube, IV port, InterStim implant.
Oh, that’s not what they meant? Too bad, disabled people are almost all of the real cyborgs these days. :-P
(OTOH, I love my feeding tube, and I love my port, and I’m okay with the InterStim. Nobody ever wants you to love your implants, but I totally do.)
2:12am
April 18, 2015
Another thing…
I am not very good with words. And right now that is making getting through college difficult, so it is on my mind a lot. College is not always friendly or accomodating to disabled people. And even if it were, I’m not sure I would belong here.
And yet I’ve been doing really well on a lot of non-academic things, like helping a friend set up a new garden and chose plants for their exact position, sun exposure, and soil type. And some of those things are another facet of the not-words. And I’ve been helping teach a class and the students seem to like me.
Wish for more respect for all who are not strong with words, whose gifts may lie elsewhere.
10:52pm
April 17, 2015
For no shame day/disability pride day. Because of my disabilities, I move differently, which is not usually looked upon as a good thing. I’ve especially gotten flack for all the times I’ve been able to communicate with my hands better than my mouth.
This particular kind of shame is especially difficult - because it forms another barrier to communication. Because in order to communicate you need to work through the fears of what people will think of your signing or writing.
Disabled people are just as beautiful and good as nondisabled people.
My body is beautiful, my stimming is beautiful, my voice (such as it is) is beautiful, sign language is beautiful and allows more communication.
The heart and the ILY sign are for my disabled sisters/brothers/siblings/cousins.
7:16pm
April 6, 2015
Stress makes everything harder
Autistic people are autistic all the time. Sometimes some difficulties fade into the background, then come back out again when someone is particularly stressed out. This is true across the board for sensory issues, communication issues, movement, and all kinds of other things. (This is also true for people with any other kind of disability).
The intermittent nature of some apparent difficulties can sometimes lead to them being misinterpreted as psychosomatic. They’re not. Everyone, autistic or not, has more trouble doing things that are hard for them when they’re experiencing significant stress. Some things are particularly hard for autistic people, and those things also get harder with stress.
This is how it actually works:
- Doing the thing always takes a lot of effort
- Putting in all that effort has become second nature
- When you’re not exceptionally stressed, you might not notice the effort it takes consciously
- When you *are* really stressed, you don’t have energy to do the thing in the ways you normally can
- So you end up having more trouble than usual, and probably looking a lot more conspicuously disabled than usual
For instance, with motor issues:
- For those of us with motor difficulties, moving smoothly and accurately takes more effort than it does for most people
- This can become second nature, to the point that we don’t consciously notice how difficult it is
- But it’s still there
- And when you’re really stressed or overwhelmed, you may not have the energy to make yourself move accurately
- So things you can normally do (eg: handwriting, not walking into walls, picking up objects, pouring water) might become awkward or impossible
- That doesn’t mean you’re faking or somehow doing it on purpose
- It just means that things are harder when you’re stressed
Or with sensory issues:
- Living with sensory sensitivities means that a lot of things hurt
- For the sake of doing things anyway, a lot of us build up a high pain tolerance
- To the point that we may no longer consciously process things as pain even though they hurt
- Ignoring pain takes a lot of energy
- When we’re really stressed, we may not have the energy to ignore pain
- And things we normally tolerate can be experienced as overloading or intolerably painful
- That doesn’t mean we’re faking the pain to avoid something stressful, or that we’re somehow bringing it on ourselves.
- It just means that everything is harder under stress, including tolerating pain
Or with communication:
- Communication can be hard for a lot of us in varying ways
- For some of us, being able to speak requires juggling a lot of things that are automatic for most people
- Or being able to use words at all, including typing
- For some of us, that’s true of understanding people when they talk to us
- Or of knowing what words are at all
- If someone can’t talk, understand or use words under stress, it doesn’t mean that they’re somehow faking it to avoid a difficult situation
- It means that communication is hard, and stress makes everything harder
tl;dr Stress makes everything harder. For people with disabilities, that includes disability-related things, including things that we don’t normally seem to have trouble with. Sometimes we’re wrongly assumed to be doing on purpose or faking to avoid a difficult situation; it should actually be seen as an involuntary, normal, and expected physiological response to stress.
4:13am
March 22, 2015
Hoofbeats in your stethoscope
“When you hear hoofbeats,
Think horses, not zebras.”
That’s what the doctors say
They mean think of obvious diseases
Before the obscure ones
But my life has been a testament
To when this doesn’t work
So I have some lists
To guide doctors on their way
When you hear hoofbeats
The first thing you need to do
Is discern what country you are in
And what country your patient is in
As well as what country your patient is from
What country their parents are from
How far they have traveled
And where
So when you hear those hoofbeats
Galloping up your stethoscope
Here are some things to look out for:
Horses, cows, pigs, sheep, goats, donkeys, mules —
The farm animals and beasts of burden
Familiar to Western doctors
Llamas, alpacas, camels, dromedaries
Asses of all sorts
And not just horses’s asses —
Like some of you
Oxen, buffalo, tapir, rhinoceros
Yaks, wild hogs, deer, antelope
Peccary, chevrotain, and of course zebras…
Can I stop now?
Do you get the idea?
Do you know how many times
I’ve almost died
Due to doctors thinking
“It’s either horses or psychiatric”?
I have a list of non-horse medical diagnoses
Some rarer than others
All confirmed by rigorous testing
Performed by standard medical practitioners
And so does my whole family
So when you hear hoofbeats
Think ungulates
Then try to figure out which ungulate it is
That is, after all, your job
And whether you find horses, zebras, or miniature deer,
You will save lives.
8:18am
February 24, 2015
Mouth Magazine on Help and Power, and what disabled people know that do-gooders never seem to grasp.
The pictures are GIFs, but they’re from a time when GIF was just an image format like JPG or PNG, it didn’t mean they had to be animated. These ones are not animated. Everything beyond here is an excerpt from Who’s In Charge? from Mouth Magazine. If you’re interested, this is just the end of a lengthier article. And this is only one page from their website, which has some pretty amazing stuff.
Here is one picture of helping.
Here is another.
Pictures of helping deserve a second look. The photo at right, from a cancer camp, shows a helper offering her hand.
Should the boy accept this offer, on the trajectory indicated, he will lose his wheels and dangle, helpless.
He can see it coming. She cannot.
He will, all his life, be the real expert on what help he wants or doesn’t.
That is exactly not what is taught to students at helping schools.
He will learn: (a) that not all help is helpful, (b) that he must find graceful ways to decline even ill-conceived help, and © that gratitude is required in any event.
3:04am
February 19, 2015
Your Feeding Tube
people have told me
they would never want to eat
artificially
I’ll believe when they decide
to throw out their stove and fridge
(title is a writing prompt)
2:20am
February 16, 2015
WTF, Medicare?
Does it occur to you that I don’t have $116 + $185, + the $200 in pharmacy bills this month, and the money I owe the hospital because you don’t think having a feeding tube is adequate reason to see a nutritionist?
~~~~~No, I’d need diabetes or kidney failure before I’d need a nutritionist. Getting an entirely new way of putting food in my system, and making sure the calories and nutrients are correct, that’s not a nutritionist’s job at all~~~~~
And this lateest billl doesn’t even tell me what I’m being billed for. Not in English anyway.
And the cat needs to go to the vet, but I have to wait for vet insurance claim forms to be changed over.
And my rent just doubled practicallly.
Grrrrr it’s like moving all over again, except there’s no reason this that I can see other than to torture poor people with expensive disabilities.
3:56am
January 30, 2015
Feminist blog that is apparently popular writes post explaining why mainstream feminism perpetuates feminism. Post is written by a disabled woman.
All of this is well and good, but the first and most prominent part of the article is all about language, including metaphorical language. Sigh. Are we still at the point where language is considered the primary issue?
To be fair, there was a part about accessibility—though it wasn’t as specific as it could have been, IMO. So it wasn’t as though the author completely reduced the issue to language.
All the same, the relative weights and placement of these sections are pretty telling.
I get it. It’s much easier to tell people what words and phrases they shouldn’t say than to tell them to make their events accessible, start having sign language interpreters, etc. But if we don’t even make some kind of effort, then these things sure as hell aren’t going to happen.
Reblogging because this commentary post seems right on, although haven’t read the post it’s responding to.
Completely off-topic WTF the update seems to have broken xkit’s ability to automatically add the same tags that were being used in the post you were replying to. Hey tumblr, I was using that!
8:47pm
January 18, 2015