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@isthisableism
Booooooy how people donāt want to look at this.
Arguably, with age, the majority of people do become disabled.
^ ^ ^ ^ ^
āWhy should healthy people pay for sick people?ā āBecause the only things separating healthy people from sick people are time and luck.ā
Original image text:
āThe disabled population is the worldās largest majority of which anyone can become part of at any timeā
An emergency preparedness kit list for the elderly and people with disabilities.
How are safety nets and responsibility not incompatible?
Thatās just such black and white thinking.
Look ā does it never occur to you that you can be a thoroughly responsible person who plans and executed a sensible and productive life and still get hit with bad luck? A car hits you, or youāre diagnosed with an expensive cancer or chronic disease. And you think youāre covered, because people like you are covered for this shit, right, but nope, you get caught in some shitty insurance company escape clause and there you are: screwed. Or: all your sensible planning is upended out of nowhere by a seismic shift in the business or regulation or tax or technology landscape, or a war, or a natural disaster, and yes the same insurance bullshit applies there. (You can also of course be *born* with a disability or expensive medical condition, or get hit at two or nine or thirteen or nineteen, and just when exactly are you supposed to have exercised your native virtuous responsibility and organized yourself a proper adult life with the kind of cash flow and reserves and insurance that would in theory make that kind of disaster weatherable? Except that it wouldnāt, because turns out you canāt trust private insurance companies to honor *their* responsibilities, theyāre here for profit just like the rest of us and will use their corporate clout to drop your responsible virtuous ass like a hot potato?)
Many people who have good jobs and enough money and functional lives seem to have this incredible sense of invulnerability where they believe theyāll always be among the haves because just world + Calvinist virtue, and Iām sorry, but bullshit. Bad things happen to good people all the fucking time. The reason these people see a social safety net as incompatible with responsibility is that they have this bone-deep conviction that the whole reason theyāre doing well is their personal excellence and upstanding ways, so clearly itās not possible that theyāll ever be the one who needs the safety net; theyāve put in their time credentialing, work hard, have savings and insurance, are paying down their mortgages, obviously theyāll be fine, good productive middle-class people donāt need handouts from the govmint.
Chances are theyāre right and itāll all go fine for them. But if not, my own preference is for the rich, putatively decent, putatively First World country that they live in to have put a motherfucking safety net in place under them and their families, so they donāt end up broke in the streets or dying for want of what should be affordable treatment (letās leave designer cancer drugs at 250K per patient-year to a separate argument, Iām talking necessary chronic treatments costing much less than that. Insulin should be available, okay. For free, if you need it and canāt pay. I will die on that hill.)
I talk about āsafety netsā and not āwelfareā because the beneficiary is everybody. Me. You. Itās literally for myself that I worry, not just for all the people whoāve already been hit by the bad luck lotto in one way or another. Iām not in my teens or twenties any more, Iām generally privileged but also have a nonzero number of structural disadvantage points, I do not share this delusion of invulnerability and I do not trust my entitlement or privilege further than I can throw it. Weāre all human and weāre all at risk (barring the super-rich, by which I mean those with high enough investment income not to ever have to depend on a paycheck again even if expensive catastrophe) and tbqfh I Donāt Know How to Explain to You That You Should Care About Other People.
I love anaisneinās answer and I donāt want to detract from that at all, but I just need to respond to this, because the original question just makes no sense to me.
Safety nets and responsibility being incompatible? Iād rather ask how are safety nets and responsibility not two sides of the same coin?
Letās forget all about the figurative meanings ofĀ āsafety netā and go back to the literal one. Where are safety nets most often seen? Underneath people who are performing high above ground. Tightrope walkers. Trapeze artists.
How are they anything BUT responsible for using a safety net? Wouldnāt it be the height of irresponsibilityĀ to forego it?
If I see a tight rope walker performing up high without a safety net I walk away. Or I turn off the TV. I donāt want to see somebody being THAT stupid - THAT irresponsible.
ā¦
Put the figurative meaning back into the phrase, and I actually donāt view it any differently. Having a safety net in place doesnāt mean that you never take chances, or that you expectĀ others to catch you. It just means that youāre sensible about it, and that you take responsibility for your actions by providing yourself with a safe place to land - in case you need it.
the above is exactly what I meant, and perfectly illuminates why it doesnāt make any sense to see āsafety netā and āresponsibilityā as binary opposed/incompatible approaches to risk.
Having Ehlers Danlos Syndrome sometimes feels about the equivalent of being composed of jello and wet spaghetti. Nothing stays where its supposed to. Literally every single cell in the body is floppy, so fingers are definitely an issue for many of us. I can almost guarantee that for the majority of us, writing is not only slow and painful but nearly impossible at times. FIne motor skills? What even are those? An EDSer surely doesnāt have any of those. Even typing which is far easier than writing, is painful and daunting at times. But last year I joined the population of shiny zebras by getting fitted for a set of Silver Rings Splints and they are beyond magical.
For those of you who have not heard of The Silver Ring Splint Company, they are a company that custom makes finger splints that look like elegant pieces of jewelry. Donāt believe me? Well I canāt even tell you how many compliments Iāve received for them. Nobody even suspects that they might possibly be medical. But more importantly, they work amazing! I still have hand pain and finger dislocations when performing fine motor skills and writing is definitely not something I look forward to but I have saved myself thousands of painful dislocations, I can open doors easier, type faster, write longer and hold objects in my hands without looking like an alien from a sic-fi movie. With the rings on my fingers actually look like fingers rather than tentacles!
The company is also family owned and the people are so sweet and helpful!
If you are having trouble with hand pain, clumsiness and dislocations please check out this amazing company!
http://www.silverringsplint.com
Iām literally crying right now. I will be able to use my hands!!! As it stands I canāt do dishes, hold things, write, hold books, type, without pain or dislocation. Oh my gosh. This is a miracle.
We do not need a cure
Iām just now starting to use Instagram. I post pictures of my comfort object and my stim toys. I tag everything with the #actuallyautistic tag.
I noticed a lot of Autism Moms started following me. I looked at some, nothing too bad. Some blue for autism, some ableist things but nothing too uncommon.
Today a new person followed me. A title of something along the lines of āhelp raise autism awarenessā. A lot of pictures of a little boy. And then I found this:
I cannot translate to words how angry I felt.
Do you love your child? Do you love your autistic child? If you do, then stop āfighting for a cureā. A cure wonāt do any good for us. Geez, itāll probably ruin your child forever.
If an autistic child gets ācuredā, it wonāt be the same child anymore. Autism makes us who we are. Autism is something beautiful, not shameful.
Dealing with your childās meltdowns can be difficult for you, but I can guarantee that youāll never experience such panic, discomfort and pain that we, autistics, do during a meltdown. It affects our body, our mind, itās hell. Yet, you go around doing a pity party because āitās so hard to deal with an autistic childā. Bullshit.
Youāre wasting your money and resources for a ācauseā that will do more bad than good for autistics all over the world. We will probably be denied basic accomodations because āyou can just get a cureā. A cure that would probably kill us. A cure that would probably make us empty.
How many children will die in testing? How many kids will be forced to take a ācureā that will have horrible side effects until the researchers find what theyāre looking for? How many, I ask, will have to suffer until your ableist ass gets satisfied?
Autism wonāt stop existing. Autism will always exist. Itās not a plague or a sickness. Itās something inside us, itās our brain. We were born this way.
Just like what is happening with Downās Syndrome, people want to detect an autistic child inside the womb and kill it before itās born. How do you think we feel knowing that half of the world wants us dead?
Because I feel horrible. Angry. I want to fight back.
We are not monsters. We are human. We exist and we can have wonderful lifes. We are what we are because of our autism, not despite it.
We are autistic.
We are here.
Listen to us.
Kindly (but not so much), an autistic person that is pissed off.
(okay to reblog)
Weāre ramping up for the conference next week!
I am still fundraising for remaining travel and lodging costs associated with the trip up from Virginia. I am presenting twice at the conference as well as meeting my WCSA mentor in person for the first time, so this is going to be a great investment!
Thank you to everyone that has given and shared so far! Youāre all rad!
PayPal @ mrosborn1[at]gmail[dot]com Link to the Gofundme campaign and other ways to contribute in the two posts following this one!
I am presenting on health disparities being upheld and perpetuated by class biases at this conference, so if yāall are interested please share š¤
- MO
a reality check thatās a blow to the solar plexis
SEE ALSO: why iām crumbling under the weight of prolonged loneliness for fear of letting anyone in again & repeating this
[via]
See also disabled kids and parents. A lot a lot a lot of parents are perfectly acceptable parents until they have disabled children. They start to blame us for shit and say we deserve what they give us. my mom was a decent mother until she had me.
i hardly ever see campaigns like this.
šØšØDisabled comrade in need of emergency assistance!! šØšØ
Copy-pasted from a Facebook post, with permission
Posted by Katrina:
I am in a really bad spot.
I have an important appointment with my eye doctor tomorrow. My sight depends on it.
Apparently I don't have insurance. I don't have a ride. I don't have things that were supposed to be taken care of.
If I can manage to drive, maybe they will even see me when I don't have the cash for the visit, but it's doubtful.
Then I have court Friday for an expired registration that I wasn't able to get taken care of, because I've been experiencing so much hardship. I don't know what will happen with that?!
I think it's worse to have half assed "support". People think you're being helped and cared for, when you really are being sabotaged. Malicious or not, that's my material reality.
I can't get anyone to aid me in getting assistance from social services like Medicaid.
My 2.5 year long social security application and accrued back pay was throw out because I trusted someone to mail off an appeal when I was not physically able to. The tracking number receipt was misplaced and of course they said they "didn't get it".
I don't have any energy or ability to go find an advocate. Everyone wants you to come in for an appointment, but I can barely make it to see doctors.
Being sick and poor is a death sentence. It seems that I'll probably have to wait til I have cancer from my high risk syndrome to get any official help.
There is plenty of evidence that I'm disabled, but the gov orgs have beuroRATS who are only familiar with more common stuff. Even with that, I should be a clear example of someone unable to fend for myself, trapped, in a state of neglect.
I really did try to keep making some income. I can't rely on my body. I pushed too hard for too long.
Even having a private policy was supposed to be temporary last year! Just for the few months it would take to get approved for public assistance!
All my records are a mess from moving, I was never able to physically get all that shit together and see someone.
I keep having health events pop up that prevent me from doing all that.
I'm disabled. This whole broken system is so ableist.
I can't always drive, have been hemorrhaging cash on medical costs, and have nothing left, I can't dig any deeper. There's never even enough for food and meds.
How the fuck was I supposed to go to the DMV? Things just keep snowballing. The hole is getting deeper.
If I'm underinsured I really won't be eligible for any programs, but I have emergencies pop up and can't go without. You have to be in good standing with these doctors. I'm in collections with so many medical bills.
This stress is the biggest trigger to my symptoms flaring. I'm unable to present my case and start over again. No one makes house calls.
I really don't want make a go fund me for myself and exploit that kind of biased platform, but I know I don't deserve this either.
I've been way less active on here lately trying to give myself a break, but nothing helps.
There are so many things I could try to get better quality of life and functionality, but they're just not accessible.
Even if I'm approved for Medicaid, they don't cover a lot of the stuff I'll need, there will always be more hoops to jump through.
I can't even get myself mobility aids, braces, things like that.
I can't just shell out $1000 to try a med that may not work or go to therapy.
To get the Medicaid you have to have a current social security application. I'm at my breaking point.
I shared what happened to me with the local eye doctor in a post a while back.
I was sexually harassed, physically assaulted, intimidated, and defrauded. That's why I'm still having to go back and forth to this new doctor, still on these eye meds, and having complications.
I can't catch a break. The fucking pig who pulled me over didn't have to give me a citation, but went ahead and did. I was almost home from a 13 hour day. I had to go 4 hours away to see my PCP and back, got detoured, just utterly demoralizing.
I needed to see these doctors to get well enough to even be able to go get all my stuff up to date with my car, license etc.
I needed to get my flare under control first off, so I can see, so I'm not spending every dime on copays, and to document just how screwed I am.
Every period of time that I go without the medical care I need is also going to be held against me. They're not going to see that I should have had tens of thousands of dollars or more worth of medical care. They just want to see how much you've actually spent.
So, when I should have had all this stuff checked out or fixed, I've just been terrified and suffering more.
I need a miracle, but in the meantime, I really need emergency funds and solidarity. I mean it when I say I am physically unable to do this shit.
I don't know how to even express how bad spending hours on the phone fighting for help, being told to "just go here", etc makes my symptoms worse.
Those stressors make me shut down. They incapacitate me.
I'm in debilitating pain and can't even make my case anymore. There is no "doing what you have to do". I'm past all that. I did that until there was nothing left. It really is too much.
Please help in any way you can. Before I got so sick I took care of people. I really was there for others. I still am emotionally. I give moral support, people seek my advice, I freely give what I have to offer, I know it's not much, but I'm not worthless.
I'm still a problem solver, you have to be when you can't take care of yourself, I'm at a loss here though.
Sadly, there just isn't reciprocity from those who benefitted from me when I was able to be organized, thorough, physically supportive, I showed up for people. For shit like this!
I guess I'm disposable. I'm a prop for photo ops on holidays and other functions like that, but otherwise abandoned beyond superficial appearances. From the outside it looks like I have people in my corner, but I really don't. Not in a meaningful way that counts.
That hurts more than truly being alone. Then I'd probably have more tangible relief.
So, please, I really need a hand here. I don't need general life advice, I really don't think I can take suggestions like that right now. I don't need medical advice. Well, I do, but from my doctors.
I need solidarity and action. I am open to thoughts on how to get over the obstacles that I've mentioned. Specifically, how do I get crowd sourcing going? Can someone please help with that? Do I work that even though it's problematic as fuck?! Ya know? I am being left to rot.
Can y'all please share elsewhere for me as well? I can barely keep myself composed thinking about this stuff. I've been through some shit, but I'm tapped out. My eyes are acting up. I'm dreading what that means.
What's going to happen at court? I am not ready to give up my old car, nor would I feel safe doing so. I need it for emergencies. People really don't get that I can't just be somewhere as planned at 9:30 am, let alone face a judge! My body doesn't work like that.
The more indigent I appear, the more discriminated against I am with healthcare providers, and they're shitty at helping with the clerical paperwork shit even when you have your shit together.
If anyone could write up a post that can be used for reaching out to the general public, that would be extremely helpful.
I'm not worried about my pride, but I am in a very vulnerable dependent situation. I really need things to turn around. I need to be able to have my surgeries and to take better care of myself, to have the fixable stress alleviated.
Here's my PayPal...
paypal.me/KMartling
:))
Attorney General Jeff Sessions is rescinding policies concerning civil rights, people with disabilities and immigrants.
FUCK YOU SESSIONS
Shout out to the disabled people making progress that no one recognizes because itās not what society considers to be āimpressiveā or ācommendableā
Shoutout to all the disabled people who are managing to get out of bed for the first time in months.
Shoutout to the disabled people who made their own meals today.
Shoutout to the disabled people who are going back to school/ work.
Shoutout to the disabled people who went grocery shopping.
Shoutout to the disabled people who drove themselves around.
Shoutout to the disabled people who managed public transport.
Shoutout to the disabled people who accomplished any or all of the things they wanted to today.
And a big shoutout to the disabled people who didnāt do any of these things bc they finally gathered the strength to say no and listen to their limits.
Your accomplishments are worthy. Your life is worthy. YOU are worthy. Donāt let anyone tell you otherwise because you arenāt āproductiveā according to societyās standards.
hey if ur ever feelin shitty use this
Holy shit Iām trying not to cry.
i really needed this one tonight
Do it!!!
Please do it
Thank youā¦
It actually made me smile
I canāt stop smiling this made me feel way better than it should haveĀ
In case you guys need it š
Awe thatās so cute everyone should use this š
iām crying in gym class and i donāt know how long itās been since iāve felt like this. use this, itās the best š
Try it please š
I needed this right now
Streaming tonight on accessibility in community organizing & reportback on todayās Healing from Mass Incarceration workshop!
I will be streaming tonight at 10PM EST on #Younow! ā° Report back from this eveningās Healing from Mass #Incarceration #workshop and planning for the event on Sat on #accessibility in community organizing šCatch me at ChronicallyAlways! š
Come join me! š¤
- MO
Shoutout to my Chronic Cuties who pushed themselves today! Whether you managed to exercise or roll out of bed, Iām really proud of you.
Itās hard doing things that take so much effort and itās especially hard when your body is putting up a fight. Iām proud of you. So proud of you.
Youāre amazing. Youāre strong. You did amazing today. I love you.
Wheelchair Resources
t can be extremely overwhelming to need/begin using a wheelchair. Resources and advice from disabled people can be hard to find. Here is a collection of helpful links and mini-essays from people with lived experience!
Resources for free/donated/discounted chairs
Discounted manual wheelchairs
Amazon has a decent selection of reasonably-priced wheelchairs
Great selection of chairs with a range of prices
Buy customized power wheelchairs at an affordable price. Non-profit organization
Guide to choosing the right chair
Fact sheet on manual wheelchairs (basic types, what to look for, etc)
Wheelchair-pushing tips for caregivers and loved ones
Tips for part-time wheelchair users
Lots of wheelchair tips from someone with firsthand experience
Advice on choosing a chair, accessories, etc.
When is it time to upgrade to a new mobility aid?
please feel free to reblog and add your own links and advice
Quick question why the fuck do so many abled people get so uncomfortable when chronically ill/disabled people refer to ourselves as chronically ill/disabled???? Like no, Karen, Iām not being negative, thatās just my life.
