I’m going to blow your minds today. Are you ready?
– Sometimes I use crutches. Sometimes I don’t. – Sometimes I wear braces on my joints. Sometimes I don’t. – Sometimes I use my handicapped tag. Sometimes I don’t.
Have we all grasped the ‘sometimes’ concept? Good. Because here comes the hard part.
i’ve said this a million times but i’ll say it again for the abled people who still dont get it: you 👏don’t 👏"overcome" 👏 disability 👏 it’s an identity – you learn to embrace. He STILL has cerebral palsy. He’s STILL disabled.
The only extra challenges he faced are due to the fact that our society is still inherently ableist and inaccessible. Nothing to do with his physical condition.
A challenge to disability professionals and disabled presenters at conferences and panels: Please find a way to respond to the routine contempt that presenters with disabilities are treated with.
I’ve gone to a fair number of disability-related conferences in the past few years. At nearly every conference, I saw an audience laugh at a presenter/panelist with a developmental disability. This happened particularly often to presenters with intellectual disabilities, but I also saw it happen to autistic presenters and presenters with speech disabilities.
This isn’t a matter of random jerk encounters; it’s a major cultural problem. Even disability professionals who pride themselves on inclusivity and respect tend to behave this way.
This isn’t nice laughter. It’s not a response to something funny. It’s a response to presenters talking about what they’re proud of, what they’re good at, or talking about wanting control over their own lives. People also laugh similarly when parents and siblings talking about their disabled relative wanting autonomy or objecting to being treated like a little child. This happens all the time, and it needs to stop.
If you’re moderating a panel and the audience laughs at a panelist, here’s one method for shutting this down:
Be proactive about taking the panelist seriously:
Don’t look at the audience while they’re laughing, and *especially* don’t laugh or smile yourself.
Wait for the audience to stop laughing.
Pause briefly before going on. This will make the laughter feel awkward.
Ask the panelist a question that makes it clear that you respect what they’re saying.
You can explicitly ask “Did you mean that seriously?”
You can also be a bit less direct, and say something like “That sounds important. Can you say more?”
You can also ask a follow-up question about the specific thing they were saying.
I think that we all need to be proactive about changing this culture. (Including disabled presenters who get laughed at; we need to insist on being taken seriously. More on that in another post).
There are more ways to shut down disrespectful laughter and insist on respectful interactions than I know about. What are yours?
In order for disabled people to receive any sort of financial assistant for their housing, food, bills, medical supplies, etc., they cannot ever have more than $2,000 of resources to their name. Ever.
It doesn’t matter what it’s for.
You’re saving up for a new wheelchair?
For college?
To put a downpayment on a house?
Hell man, you just happen to budget for once in your life so that you can have some extra money in case something bad happens?
Your benefits immediately get cut off if you’re a cent over $2,000.
And, even worse, you usually end up having to pay back every dollar the government gave you that month.
So say you get $400. If they find out you’re twenty dollars over the resource limit, you have to give them all $400 back and you undergo an investigation of your funds to see if you will continue getting money.
“What if I spend the money that day?”
Doesn’t matter. In fact, from what I can tell, people who do this are actually put under investigation for fraud.
And yes, this system literally kills people.
Remember when “Guardians of the Galaxy” came out? one of Rocket Racoon’s creators, Bill Mantlo, suffered an accident in 1992 and has irreparable brain damage.
before the movie came out, Marvel gave him an exclusive preview screening. SOme people were upset because they felt if Marvel was really wanted to thank mantlo, they should have donated money to Mantlo’s family.
Bill Mantlo’s brother had to come out and explain: If Marvel gave them monetary aid, Bill Mantlo would lose his financial assistance.
That’s so utterly depressing.
disgusting
I have friends on welfare who won’t pick up a penny in the street because they’d risk the welfare they struggled to get for 10 years.
oh look another fucked up thing in this world. let’s just add it to the list. number 63858b
My brother has been on California State SSI for autism for the last 10 years, and he absolutely has to (no joke, HAS TO) spend all 720 bucks of his SSI every month, because if he puts it in the bank he risks losing his SSI altogether.
Sometimes, at the end of the month, he has no idea what to do with his money because the whole month went by and he still has 400-ish bucks in his account, and he fucking panics because he doesn’t want to get anywhere near 2,000.
And here’s the funnest part of the story!
One day he did a huge commission on Second Life and wound up earning 1500 bucks off of it, and he told the guy to donate it 500 bucks at a time over 3 months. The guy didn’t want to, and just donated all 1500, which put my brother at 2,036 bucks.
The state IMMEDIATELY (I’m talking less than an hour) called him up to tell him over the phone that they were canceling his SSI, because they noticed he had gone over the 2,000 buck threshold. He had to tell them that someone had made a charitable donation to him and that this was not a common occurrence in any way shape or form, and upon not believing him, my mother had to call to talk to them as his legal caretaker and say basically the same thing until they called off the cancellation of his SSI money.
He also had to cancel his renter’s assistance because it put him to 1,062 a month, so if he went 30 days without spending any money they’d cancel his SSI altogether. Like, none of us in the family have any fucking clue why that regulation is in place and it’s the stupidest shit in human history.
Please, legal side of Tumblr, tell me what positive reasoning this law has?
It’s not just money, though. Things you own can count against your resource limit as well provided that they’re not exempt and provided that they’re worth money.
Also, the rules about what is and is not exempt from being counted against your resource limit are incredibly vague and deliberately open to interpretation. Even things that are normally exempted like clothing or furniture could be deemed non-exempt if a capricious bureaucrat decides that it’s actually worth too much money and thus counts as an ‘investment.’
As someone who receives SSI this causes me a huge amount of stress.
This is so unbelievably fucked up
I knew a blind guy who apparently needed to get some kind of “medically necessary equipment” declaration to try to keep his computer from getting counted against the $2000 individual asset limit. He was in college, and really really needed access to screenreading software–which helped justify his even needing it at all.
That was also in the early ‘90s, when most people did not have PCs at home, they were considered more of a luxury item, and you could EASILY spend most if not all of that $2000 on a new desktop system. Forget laptops.
As much as the costs of basically everything but certain technology have gone up in the meantime, that $2000 individual asset limit for SSI has not.
A major purpose of allowing a certain amount of assets was: to cover major costs of an urgent nature, such as to replace a furnace or another essential appliance. The costs of such items have increased considerably since 1989.
In order for disabled people to receive any sort of financial assistant for their housing, food, bills, medical supplies, etc., they cannot ever have more than $2,000 of resources to their name. Ever.
It doesn’t matter what it’s for.
You’re saving up for a new wheelchair?
For college?
To put a downpayment on a house?
Hell man, you just happen to budget for once in your life so that you can have some extra money in case something bad happens?
Your benefits immediately get cut off if you’re a cent over $2,000.
And, even worse, you usually end up having to pay back every dollar the government gave you that month.
So say you get $400. If they find out you’re twenty dollars over the resource limit, you have to give them all $400 back and you undergo an investigation of your funds to see if you will continue getting money.
“What if I spend the money that day?”
Doesn’t matter. In fact, from what I can tell, people who do this are actually put under investigation for fraud.
And yes, this system literally kills people.
Remember when “Guardians of the Galaxy” came out? one of Rocket Racoon’s creators, Bill Mantlo, suffered an accident in 1992 and has irreparable brain damage.
before the movie came out, Marvel gave him an exclusive preview screening. SOme people were upset because they felt if Marvel was really wanted to thank mantlo, they should have donated money to Mantlo’s family.
Bill Mantlo’s brother had to come out and explain: If Marvel gave them monetary aid, Bill Mantlo would lose his financial assistance.
That’s so utterly depressing.
disgusting
I have friends on welfare who won’t pick up a penny in the street because they’d risk the welfare they struggled to get for 10 years.
oh look another fucked up thing in this world. let’s just add it to the list. number 63858b
My brother has been on California State SSI for autism for the last 10 years, and he absolutely has to (no joke, HAS TO) spend all 720 bucks of his SSI every month, because if he puts it in the bank he risks losing his SSI altogether.
Sometimes, at the end of the month, he has no idea what to do with his money because the whole month went by and he still has 400-ish bucks in his account, and he fucking panics because he doesn’t want to get anywhere near 2,000.
And here’s the funnest part of the story!
One day he did a huge commission on Second Life and wound up earning 1500 bucks off of it, and he told the guy to donate it 500 bucks at a time over 3 months. The guy didn’t want to, and just donated all 1500, which put my brother at 2,036 bucks.
The state IMMEDIATELY (I’m talking less than an hour) called him up to tell him over the phone that they were canceling his SSI, because they noticed he had gone over the 2,000 buck threshold. He had to tell them that someone had made a charitable donation to him and that this was not a common occurrence in any way shape or form, and upon not believing him, my mother had to call to talk to them as his legal caretaker and say basically the same thing until they called off the cancellation of his SSI money.
He also had to cancel his renter’s assistance because it put him to 1,062 a month, so if he went 30 days without spending any money they’d cancel his SSI altogether. Like, none of us in the family have any fucking clue why that regulation is in place and it’s the stupidest shit in human history.
Please, legal side of Tumblr, tell me what positive reasoning this law has?
Happy 4th of July everyone! This is what the “nation of opportunity” looks like.
I’m curious though, if this counts towards money in your paypal as well? Like, i know there are ways to get donations/payments through paypal, and you could send yourself money from your paypal to your bank (I have to do it when i get paid by clients/commissions i do). Are they able to track your paypal at all? Could you technically hoard money in your paypal? Are you allowed to have more than one bank account, or is that considered fraudulant behavior? (I know when my Grandpa, who was illiterate, came into our care, he had a bank account attached to his name, but since his relatives no longer wanted to care for him, we had to get “power of attourney”, to handle all of his financial shit, and my mum was on SSI and had her name on two bank accounts because of that, but i don’t remember if it affected her SSI or not??)
Good Question.
And this is also why a lot of disabled people don’t work. Because if they got a paycheck, they’d lose their SSI.
(”But!” I hear you say, “If they got a paycheck, they wouldn’t need SSI!”)
Ah, but then they’d also lose the insurance that pays for their medical equipment and medication, and personal care attendants that help them bathe and dress and eat, etc.
An entry-level job might allow you to have more than 2,000 in the bank after a few months (and the government could only take back what you owe in taxes, and not the whole thing), but it’s not going to pay for all the other things you need to stay alive and not die in a puddle of your own filth.
And if you’ve been disabled since childhood, you therefore can’t afford to ever get an entry-level job. … And good luck getting a salary in the upper range of five-figures, that you’d need to afford for paying for all those needs out of pocket, if you’ve never had that entry level job to begin with.
But, no: disabled people who have some skills but are not employed are just cheats and scroungers… Right. [/sarcasm]
(This, BTW, is also why we need single-payer health care, a living wage minimum, and a universal basic income, so corporations can’t jack up the prices of healthcare beyond the finances of 99% of the nation’s populace.)
I’ve heard a lot of advocates of inclusion say things like “kids with disabilities work twice as hard as everyone else” or “my employees with Down’s syndrome never come in late or take a day off.”
This sounds like praise, but it isn’t.
The time disabled people spend working twice as hard as everyone else has to come from somewhere.
There are reasons why kids aren’t in school every waking moment. There is a reason why vacation time exists and why it’s normal to be late occasionally.
People need rest. People need leisure time. People have lives and needs and can’t do everything.
Being disabled doesn’t erase the need for down time. Being disabled doesn’t erase the need for play, or for connections to other people.
Working twice as hard as everyone else all the time isn’t sustainable. Praising disabled people for doing unsustainable things is profoundly destructive.
People with disabilities should not have to give up on rest, recreation, and relationships in order to be valued. We have limited time and energy just like everyone else, and our limitations need to be respected.
It is not right to expect us to run ourselves into the ground pretending to be normal. We have the right to exist in the world as we really are.
I try to keep this blog pretty neutral on political issues, however I am also becoming increasingly aware of the general public’s gross misunderstanding of why ADAPT and other disability groups are protesting so prominently against the senate’s healthcare bill- and it’s a lot more complicated than preexisting conditions and losing insurance.
If you can make it through this, there are cute puppy photos of VSEPR at the end (from when he was an 8 week old ball of fluff).
I will start by saying I, like everyone, am quite biased on this subject. I am disabled, I am involved with several disability advocacy groups, disability activism groups, and disability coalitions. I am close to people with all sorts of disabilities. And many of them are a part of the community doing wonderful work because of medicaid.
There’s a perception that institutionalizing people with disabilities (physical and mental) is a thing of the past. And that institutions and nursing homes are significantly safer and more dignified than they were “way back when”. Neither of these are true, and a big part of whether someone who is disabled is a part of the community or is locked away in an institution has to do with where you live and your access to medicaid.
Medicaid is the primary insurer of low income individuals and individuals with disabilities, and almost half of children born in the US. Without the Affordable Care Act (ACA/Obamacare), it is often the only insurer for people with disabilities.
On a federal level, medicaid must cover the cost of a nursing home, but individual states can elect to offer what are called waivers for home-care for “non-skilled” and “skilled” medical care. “Non-skilled” is typically an aide who helps an elderly person or person with a disability function in the community but not providing skilled nursing. This can look like anything from helping someone with a physical disability dress and feed themselves to transporting someone to community events to attending doctors appointments to simply using the bathroom. “Skilled” care might be an in home nurse for maintaining IVs and IV medication or nutrition, in home physical therapy, helping with feeding tubes, or any number of other things an individual may not be able to do effectively by themselves. These services are what allow many disabled people and elderly people to stay in their homes and a part of their community. Private insurers generally do not pay for these services long term. Disabilities, however, exist long term.
Without medicaid waivers, becoming significantly disabled and not having access to a very dedicated family or an enormous amount of money to pay for these services means you are sentenced to live in an institution, away from the community.
The federal government is not saying “no” to waivers with the AHCA, they are restructuring the way they pay for medicaid. Rather than reimbursing states for how much medical care actually costs, the federal government would only pay a set amount per person (like a block grant). So, states that currently offer waivers would no longer be reimbursed for those waivers and often don’t have the budgetary means to offer them. This means that more and more people with disabilities will likely lose their access to the community and ability to live independent, dignified lives if the AHCA is passed. I, and most of the protesters, believe the right to get dressed and go to work, use the restroom, and be bathed without being institutionalized is a basic right that should be protected by the federal government. The AHCA deeply threatens that.
This is just one aspect of why this bill scares me and so many other people with disabilities. The bill and the issues surrounding it are complex and take years to understand. There are many problems with insurance and our healthcare system and medicaid is no exception, but in my opinion, gutting medicaid is not the right answer.
Help us be a part of society and contribute by educating yourself on this and expressing to your representatives how you think they need to vote to protect your community’s needs.
And as promised, puppy pictures:
It is not ~only natural~ to suddenly have to be taken out of your home, away from your independence, family, friends, pets, etc., because of who you are. American society largely thinks it is, but it’s not. Losing these things is devastating to anyone. It’s also totally unnecessary. There is nothing magical about places like nursing homes and other institutions that make them provide something that can’t be provided to us in our own homes. We’ve just been culturally conditioned to believe there is. I’m on my state’s developmental disability Medicaid waiver program and everyone here is scared shitless of what could happen, both to disabled people and to the jobs of the people who currently provide us services. (My home care agency is one of the largest employers in the county. This stuff affects (both disabled and nondisabled) staff, case managers, administrators, etc., not just (disabled) clients.) Disabled people are often the first people who start dying (and putting us in institutions kills us faster, this is known – even aside from the other things we stand to lose, of which I’m not sure if losing my cat or my freedom is worse) as a result of budget cuts when times get tough in a country. Wherever you live, don’t let us disappear without a fight. We are not tragic figures who need to accept that we’ll live in institutions forever and/or die before our time because that’s Just How Things Are. We’re people just like you who it harms just as much to forcibly imprison us against our will just because of how our bodies/minds work, and if you don’t think that’s what it means you aren’t paying close enough attention.
All of us have been brainwashed to some degree to accept this state of affairs but it is in no way normal, natural, inevitable, or right. I am still angry that when I was a young child, my neighbor disappeared forever and was sundered from most of her family relationships in any real way, and nobody thought there was anything massively messed up about this. She had severe MS that came on suddenly. She never left the nursing home. Her family occasionally visited her. People think this is normal, so they get sad, but they don’t often get mad. People think that our disabilities are to blame, that this is the only “cost effective” way we can exist, and that “cost effectiveness” is an okay way to judge ethics even though we don’t judge other accommodations for the limitations of nondisabled people that way.
(Don’t believe me? Calculate up how much money is spent on walking people who expect chairs and benches to appear every single place they go, on sighted people who need lighting to navigate in the dark, etc. That’s not a joke, it costs a crapload of money but since they are accepted by society as normal, nobody forces them to live in special places that are the only places that have lights or chairs. Nobody then blames them for being unable to handle a world with no lights or chairs – the world outside these few special institutions that have funding to give them lights and chairs. If this sounds ridiculous to you, it is – but it’s equally ridiculous to act like having a feeding tube or a wheelchair means you need to live in a special designated place for people with feeding tubes and wheelchairs, away from everything and everyone familiar that you care about.)
So please. If you’re sleeping here, wake up to the fact that none of the way disabled people are treated by most of American society is even slightly inevitable. Wake up to the fact that there are already alternatives – these are not a hypothetical utopian world, they exist now. And don’t go back to sleep. Don’t watch us die and get disappeared into institutions – both are already happening and can happen more – and do nothing about it. Unlike most oppressed groups, disabled people are a group that anyone can join at any time in their life with no warning at all. And whether we were born this way, acquire disabilities, or both – we are still human, we still have all the same innate wishes for life that everyone else does, and it still harms us just as much to decide that we’re not capable enough for normal society and need to be put away for our own good or to avoid becoming burdens or other BS. And this state of affairs is not a tragic and sad inevitability, but rather an injustice, a horribly widespread crime against humanity, that needs fighting, fixing, and changing. And needs to be prevented from getting worse and worse.
I know it is hard to face this. I know that denial is easier – especially if you’re not disabled and think that if you just do such-and-such a thing it will never happen to you. Especially if your fear of disability is still bound up with a fear of death – since so many treat the two as nearly identical, or disability as innately worse than death (so why help us live good lives, that’s ~impossible~, right?). Just please, please pay attention and do something. Even if you’re not disabled now, likely you or someone you are close to will be within your lifetime, and wouldn’t it be better not to have to fear being abandoned or institutionalized (or both at once) when the inevitable disability happens? And not to have such a fate treated as the sad but inevitable thing you must accept as a consequence of changes in your body that you had little to no control over?
Urocyon's Jaunts 2.0 
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