You want to know why people with disabilities or chronic or mental illness are so “lazy”? It’s because arms are not designed to be substitutes for legs. It’s because brains aren’t supposed to be that one coworker that actually has a negative level of productivity. It’s because it’s much harder to be a pancreas than to have a pancreas. How much work would you get done if someone handed you a screwdriver when you needed a hammer. It’s a tool right? It should get the job done.
“it’s much harder to be a pancreas than to have a pancreas” tf does that mean???
It means there are millions of people out there, loosing sleep, trying to function as a pancreas for themselves or their type 1 child. They make thousands of decisions each week the rest of us take for granted because those decisions are made for us by a tiny, precise organ. It means that despite their best efforts and the science and technology we have today most will only hope to stave off the worst complications of the diagnosis. Because a person cannot do the job of a pancreas as well as a pancreas can.
Tag: disability
Understanding Competing Accessibility Needs
“There is no such thing as fully accessible, but what we can strive for is a world in which everyone’s needs are acknowledged, accepted, and catered to. And that begins with listening to disabled people.”
Investigation into prisoner’s suicide focuses on treatment of disabled inmates | WTOP
“An investigation into the death of an isolated inmate at Maryland Correctional Institution for Women has found the prison ran afoul of the U.S. Constitution as well as the state’s constitution and the Americans with Disabilities Act.”
Investigation into prisoner’s suicide focuses on treatment of disabled inmates | WTOP
More ouch from that survey:
The survey found 70% of respondents who needed prompting in order to eat had missed meals because they did not get this support and 86% said they had not washed for the same reason.
Nearly two thirds of those surveyed needed prompting to help them wash, dress or feed themselves.
So I was automatically thinking, “maybe I’m not doing too badly, then”. Never mind that Mr. C was offering to call and remind me to eat during the day when I was having a particularly rough time for a while there 🙄
(His own lousy executive function and all, but that’s another story. He was certainly willing to try.)
A couple people have asked if they can use the Fork Theory if they’re not (fill in whatever, I don’t care.)
The short answer is, “Of course.”
I’d like to just say that gatekeeping takes up too much energy, uses too many spoons and sticks forks in people.
Both hubby and I deal with chronic mental and physical health issues. Mine are more obvious–severe rheumatoid arthritis on top of a stack of other issues will do that to you. But “running out of spoons” happens even to people who do have the physical ability to exercise, for example. Just because someone starts out their day with more spoons, or bigger spoons, doesn’t mean they can’t run out. And EVERYONE has a fork limit.
This was designed to be a corollary, not a substitute, and I would not for a second limit who could use this idea. Everyone, disabled or not, has limits to what they can take.
In fact, the difference, in many cases, between an able-bodied person and a disabled person, between a person without mental health diagnoses and someone with mental health diagnoses is very small, and can be encompassed by one word.
The word?
YET.
You live long enough, life is going to throw trauma your way. You live long enough, you will experience disability.
And if you don’t, well, apparently you are terminally unlucky.
Seriously, gatekeeping this particular thing is a zero sum game and I really wish people wouldn’t. We need the curb cutter effect of able-bodied people understanding our metaphors. Of being able to shorthand something and have someone else go, “Ah, I understand.”
It’s tempting for me, with how disabled I am, how much more disabled I’ve been at times, to think, “Oh, no one could really understand how bad this is” with the undercurrent of (I assume I’m handling this badly compared to everyone else, but if I’m the only one feeling this way, and others don’t understand, then it’s not my fault.)
The fact of the matter is that disability is hard, and isolating and literally anyone who went through what I have gone through would have a hard time with it. I don’t have to feel guilty about not dealing very well with it.
My sister said to me once, and it stuck with me forever, “This shit is objectively hard.”
And yeah, RA is. Lupus is. Thyroiditis and Ehlers Danlos and allergies and asthma and sleep apnea and depression and isolation and dealing with the current political situation and worrying about money and stressing about jobs and kids and and and and… this stuff is hard. Lots of people can deal okay with a couple of issues, some people deal gracefully with some huge issues and most of us? Just muddle along doing our best and it would behoove us to assume that others are also trying.
We discover in our online communities commonality of experience, that we are not alone in our not-dealing-very-well, that when some people are dealing better it may be because they have more resources or know information that they can share with others.
If we forget that the reason we come together is for understanding, and start to shut people out… we’re just part of someone else’s bad day. And I’d rather not.
(Oh, and as for the knife theory, it’s pretty damn simple… in this context, knives are the things you bleed from when you pull them out, the things that make triggers, the lasting traumas, the actual aggression. They’re the things you may need medical or mental health attention to heal from.)
If You’re Gonna Make Something Wheelchair Accessible, Don’t Make it a Thing
Here’s some examples awkward accessibility being a thing:
Your at a hotel that has a lift to get you from one sub-floor to another, but the lift can only be unlocked and operated by one specific person that the hotel now has to go find. Sure, they’ve made the entrance to the sub-floor is accessible, but now it’s a thing.
The buses are wheelchair accessible but the driver has to stop the bus, take 30 seconds to lower the goddamn ramp, move passengers out of their seats, hook up the straps and then secure you in the bus. Sure, they’ve made the busses accessible but now it’s a thing.
The restaurant has an accessible entrance, but it’s past the trash room and through the kitchen. Sure, the restaurant is accessible, but now it’s an insulting thing.
Here’s some great examples of accessibility not being a thing:
The train to the airport pulls up flush with the platform. I board with everyone else and sit wherever the fuck I want. Riding the train is accessible and not a thing.
In Portland, I press a button the side of the streetcar and a ramp automatically extends at the same time the door opens. I board in the same amount of time as everyone else. This is not a thing.
I get that it is difficult to design for wheelchair accessibility, but folks need to start considering the overall quality of the experience versus just thinking about meeting the minimum requirements.
For the love of all things holy please pay attention to this
Disabled Homeless People – Good4you – a charity for disabled homeless people
This dissertation seeks to show that charities for homeless people have a duty to address disability, and that these charities fail to do so even though more than half of homeless people are disabled people.
The duty to address compliance with disability legislation is examined briefly, and the logical implication that disability among the beneficiaries of a charity must first be recognised is stated.
Two surveys were done to illustrate that more than half of homeless people are disabled people. In contrast, 16% of Britain’s population are disabled people, with a spending power of £80 billion per annum.
A computer search of disability, poverty and homelessness literature was done to find direct links between disability and homelessness. No such links could be found, illustrating that disability and homelessness are not conceptually linked in theory or common practice.
The causes of homelessness were examined, and the question raised whether many of these ‘causes’ of homelessness are directly linked to disability. Might disability poverty cause someone to be unable to meet rent payments, so that “rent not paid” is not the actual cause of homelessness. The causes of homelessness were examined in the light of the post hoc ergo propter hoc fallacy.
In conclusion I recommend that disability and Homelessness charities seriously examine the links between disability and homelessness, and that University graduates in Disability Studies are appointed to the board as Disability Officers, where they should hold no other portfolio.
I recommend that the leaders in charity governance alter governance methods and objectives in such a way that an awareness of disability and homelessness will filter through to grassroots levels, and permeate our society, as happened in the case of blind people, who are no longer homeless people. If this happens people with unseen disabilities will also cease to be homeless.
Download the complete 55 page PDF report:
I also remembered running across this site several years ago, and managed to track it down again. The author (who also got this foundation going) became homeless for disability-related reasons, and was only able to get off the street after managing to access some services. Funny how that works.
And until I ran across some of his commentary, I hadn’t been aware of some of the bass-ackward discourse around these issues which is apparently too common in the UK. I was more familiar with the US versions going on about the failures of deinstitutionalization causing people to end up on the street, which are often disturbing enough in some other ways.
Never had I run across an approach based on the idea that existing systems are just so great that surely nobody could end up homeless because of disability! Being homeless just coincidentally causes a lot of health problems. (Which is probably also true, but yeah. That’s really unlikely to help the condition of somebody who is already disabled.)
That would indeed be in a political context where “one-third of Autistic adults in the UK have neither employment nor access to benefits” (*raises hand*), and “[r]ates of autism among the homeless population are 3000% to 6000% higher than in the general population”. As just one example. (Another cause of autism: homelessness! 😐 )
It’s kind of a mess, all around–and of course not just here. With the current austerity climate, trying to help get homeless people who need it access to disability services would have to be an even harder proposition, down to things as simple as disabled travelcards. But, glad somebody saw the need.
Ran across this while looking for something else, and it’s unfortunately more relevant all the time.
Disabled Homeless People – Good4you – a charity for disabled homeless people
Financial abuse coming up got me thinking some.
One of the big pieces of relationship advice my mom had for me was to quietly stash some money away every pay period, just in case I might need it later. Especially ending up way more financially dependent than I ever wanted, because disability.
Not that she ever really accepted that part, but hey. I hadn’t thought about it in those terms before, but I wouldn’t be surprised if some of the earlier experience there helped her keep pushing to stay working when she was just in no shape to. Thoroughly fouling up her SSDI eligibility in the process. (Tip: If you’re too disabled to keep it up and might need SSDI? File as early as you feasibly can, and don’t keep stopping and starting jobs. That can mess up your work credits but good within the specified time period. My mother learned that the hard way.)
But, I can see why she might have wanted to avoid being that vulnerable to abuse in general again.
She had planned on going back to work after I was born, but decided not to once her leave was up with some encouragement. They were pretty financially stable without her income by then, and I suspect some unacknowledged disability stuff made it look more tempting.
To make a long story short: Some existing abusive behavior out of my biodad escalated, after a while she got shut totally out of the household finances that she had been managing up to that point (because culture), and he eventually started getting all important mail sent to a PO box instead of the house. Nothing suspicious there, right?
Yeah, he went through huge amounts of money nobody could quite tell where it even went–including a bunch he’d borrowed without telling her, and/or in her name. He apparently got tens of thousands in “emergency” funds off my grandparents alone within the last couple of years, and she knew nothing about it until after the divorce. (They were also hardly rich starting out.) Gambling? Coke, given the time period and just basically his personality? Doesn’t really matter. He went through all their money, plus who knows how much more, in just a few years time. And got more and more abusive acting.
The end result was that he finally got the house foreclosed on, and she left the marriage penniless and with a really unfavorable settlement because she just wanted away from my biodad’s terrible behavior. (Kinda classic in abusive relationships even without the rest, but yeah.)
Plus of course a 6-year gap in her work history and some extra layers of mental health problems.
I can understand why she wouldn’t have wanted to end up in that kind of position again. Still doesn’t make some of pressure put on me over the years right, though. Besides the ableist denial, a lot of this stuff was very victim blamey. Just makes it sadder that she did also apply most of that to herself. Not a great way to live.
At any rate, I haven’t been following the advice to stash away an emergency fund. I did start out doing that, but stopped after maybe a year–and that mini-hoard got spent on expenses. Call me stupid if you like. I probably would, if a personal emergency fund should ever start looking like a good idea. Probably would have noticed some signs of that by now, but I could always be wrong.
[image description: 3 tweets by katie @katiehianna_. Altogether the text reads, “I find it hard to believe that people who go on about stopping benefit cheats on disability are doing it because they “care” about disabled people if thats the only issue they care about and don’t advocate for disabled people in any other way.
If you don’t care about disabled ppl being forced to live in poverty because they can’t get benefits they are entitled to, who can’t access the care they need and who are discriminated against daily then don’t claim that you call out potential benefit fraud for us.
Also this harms us more than it helps us because we get accused of faking our illnesses and we get denied benefits because the government are cutting 80% of benefits and don’t care if the people they deny are genuine or not (they ARE genuine because only 0.7% claim fraudulently)]
.
From personal experience, the difficulty and hoops involved in trying to get and keep my disability benefits are incredibly draining. Able-bodied cheaters are not the ones hurt by further difficulty in getting these benefits. Changes targeted to make benefits harder to get- disproportionately hurt those of us who are actually disabled- because we are less likely to be able to put in the time, energy and effort into jumping through increasingly difficult hoops in order to get benefits that we desperately need.
Disability benefits should be the equivalent of a full time job on living wage. Things don’t cost less because you’re disabled – in fact you often have additional costs of living. You shouldn’t be forced into poverty because you are disabled.
Before anyone comes in with ’ but then ppl would lie so they didn’t have to work!’
Two responses
Universal basic income + better wages is the way forward
Who fucking cares? Not me. This insistence that ppl lie to get benefits and as a result benefits should be a fucking pittance that it’s humiliating to apply for just fucks over disabled people and is inhumane
Added to this:
No retesting of permanent disabilities.
It is huge stress for people with autism or lost limbs or so forth to be retested, especially when they’re often denied – every two years or less – their benefits and forced to appeal and then get back what they originally had (or less) … it’s weeks without income, which has sent many people homeless or forced them into short-term loans and debt they can’t escape. It’s barbaric.
Also, payments made during appeal – if they don’t deserve the cash, they can repay over time, but if they do then you’ve stopped them from going into debt and/or being made homeless. The whole system needs a huge overhaul, especially with the assessors being paid per person chucked off the system.
It’s absolutely dehumanising to say the least.
And no more marriage/cohabitation policies so that people whose only source of income is those benefits can use them to contribute to a partnership instead of having them yanked away on the grounds that “your spouse can support you now.”
Make basic living income a thing.
Urocyon's Jaunts 2.0 
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