We need your support today– it takes only one minute!

The proposed SSI Restoration Act of 2021 has expired. Its champions, Congressman Raul Grijalva and Senator Sherrod Brown, have yet to re-introduce it in this session of Congress.

We understand that in this Republican-controlled House, this bill has a vanishingly small chance of passing this term. However, the bill has momentum that we would like to see sustained into the next Congress that will start in January 2025. If this bill is reintroduced, we can continue to ask other legislators to renew their co-sponsorship of it because their support of SSI issues matters to their constituents.

We are looking to get at least 500 signatures on a public letter asking Congressman Grijalva and Senator Brown to re-introduce the bill with updates to geography (include US territories and commonwealths), the penalty structure, and extending a one-time forgiveness of outstanding penalty balances incurred under the unjust and wildly outdated 1989 asset limit.

Please take one minute to add your name at the link below and share this letter with your friends and family. The more signatures, the stronger the letter. Thank you for your support of disability justice!

mamoru:

fi-bro-no:

scarecrows-of-roses:

mamoru:

mamoru:

you may be going to school so you can get a good job “when you get better”.

make a plan for what happens if you do not get better, and make a plan for what happens if you can only get better by having a reduced course load or by dropping out of school.

even if you can get your degree, you might not be able to fully recover from the damage school does to your body, or you might not be well enough to get a job after getting a degree. prolonged stress and reduced sleep in an environment full of contagious illnesses is a very dangerous combination, especially for someone who is already struggling with a medical condition or few.

I would love for everyone to have a plan for if college and/or your career education just doesn’t work out, even if you are abled. I would love for absolutely everyone to make a plan to have regular check-ins with your well-being and reassess school if need be.

Don’t get me wrong, part of my job is to do everything I can to help college students keep going to school. I love when y'all can continue on.

But school also made me disabled. Chronic stress can trigger and worsen disabilities. I went on my merry way ignoring my debilitating pain until I graduated then tried to push through it in my MAT. I got more and more sick, even with deferral breaks. In the end, I had to give up. I mean had to.

I don’t want you to know how scary it is to have years worth of work (and debt) for little to no managable outcome. Getting set back to square one with no sense of “what now?” is terrifying.

Don’t ignore your mind and body. Don’t ignore how you’re feeling or pass it by just to get this done. Don’t panic yourself, but also don’t operate with the idea that everything will always be fine.

I’m sorry but this does panic me quite a bit.

Reduced course load and taking longer to graduate, fine, but like…..

If I don’t get a job in the field I am aiming for, I am going to cry. Hard and loud, long , soul deep sobs.

So far I’m modifying things for my newly disabled body but I swear….

If this doesn’t work out….. I can’t move back in with my family…. I just… can’t.

we cannot simply will away disability. countless people go through exactly the thought process you are going through now, that they just cannot handle the thought of life not going the way they planned. it is never easy.

but a little bit of planning ahead of time can be the difference between coming out of it with a new plan or crashing and burning and everything winding up even worse. whatever your health is, it is. you may not be able to change it in the way you hoped. and life may not go the way you had hoped. it is truly never easy to come to terms with, and I have seen so many people get far more harmed trying to move forward without a second plan, than if they had just had a few backup plans. most people hope they will be the exception and that they will be able to power through it. that is just how people think. and countless tears are shed as a result.

only you can look ahead and think about what to do next. some good calm brainstorming sessions with your school and your friends can help you come up with plans that are not the worst case scenario you are imagining here. but without a second plan, there is no saying what might happen. that is why planning is important, so you are not caught off guard and have some idea what you can do next if shit hits the fan.

take deep breaths. you are not alone. your school has services that can help point you where to go next, and there are so many communities of disabled people online that might be able to help.

it hurts to think you may have to make other plans. but it will hurt so much more and go so much worse if you have no other plans. planning can be the difference between something bad, and something way way worse.

you will not be able to solve this while panicking. you will not even be able to solve this today, or maybe even this week, or this month. it all is a process. and it will involve talking to people and figuring out what your resources are. it is a painful and sometimes long but necessary process. none of us can predict the future, but we can try to prepare for it.

for now, just get some rest if you can. take care.

Hi this was me. Put all my eggs into schooling and my graduate degree. I was disabled but able to work when I graduated. I was so confident I’d have an amazing career thanks to my education. What I didn’t plan for was what would happen if I suddenly got worse. And a year into working full time, at only 26 because I spent 6 years in college, I suddenly got worse. And I was FUCKED. Not enough work credits for disability, no savings, massive student loans, and quickly adding medical debt to the mix. I’m still fucked. So absolutely, try to have a plan for a) if school doesn’t work out b) if you find you can’t work after school or c) if you suddenly worsen shortly after college.

Now it’s impossible to be prepared for any possibility though but it’s something good to keep in mind. Don’t end up like me.

(via anxious-and-in-pain)

disagigglebilities:

ALT

Still mad I can’t get married. Not even dating anyone but smh

natalieironside:

Democrats will put forward healthcare policies that are like “The best we can do is everybody aged 30-35 who makes exactly $30,000 dollars a year but no more or less and is in perfect health could maybe possibly be eligible to apply for a free finger of whiskey and a minie ball to bite down on” and Republicans will be like “That is literally what communism is”

(via cripples-r-us)

disabledprincesses:

No one:

“Autism Moms” when their child is experiencing the worst day of their life:

laskulls:

Oh dang looking at a post smbdy reblogged got me thinking like. I wish it was easy to explain to abled people that ‘feeling better’ for chronically ill folk is not the same as feeling better for regular sicknesses. I think that’s the mistake made with this line of thinking - we don’t 'heal’, we sometimes feel less worse. That’s what better means to us.

Like - my mom has damaged lungs right? So like, everyday she has symptoms, coughing and chest pain. On days she 'feels better’ it doesn’t mean she healed, it just means she’s not coughing. And that doesn’t mean her other symptoms are gone either they’re still there. So like a 'good day/period’ for her is when she feels symptoms less. They’re not gone.

When you’re sick with like a regular sickness, when you recover you move forward. Chronic illness doesn’t work that way, it’s more like a guessing game. It’s always 'Today I feel better’ 'but that’s just today’. Tomorrow is up in the air. The future is unpredictable. So you can’t be like, setting a recovery schedule. You just have 'feel better’ goals that either go your way or collapse every other week. Only certain things are predictable, when you know your symptoms and if they have certain outside causes as well.

(via anxious-and-in-pain)

thatchronicfeeling:

Disability Pride shout out to everyone whose disability…

gets in the way of their sex life

gets in the way of expressing and/or understanding their sexuality

gets in the way of their romantic life

gets in the way of intimate relationships

gets in the way of exploring any/all of the above

(via anxious-and-in-pain)

Day six of my neck headache and today it was solely on the left side where I had the hardware replaced which is…. Concerning. Also it feels like someone is stabbing me in the head.

No call back about a CT script though. Like neurosurgeon says he wants one asap but does nothing to get me one. Cool, thanks.

I’m sure it’ll be okay.

krowepoison:

How often do you take otc pain meds for pain relief? Assuming no acute illness or injury

Multiple times a day

Once a day

Multiple times a week

Once a week

Multiple times a month

Once a month

Less frequently than once a month

I don’t take pain medication

Show results

(via crpplpnk)

heyatleastitsnotcancer:

…. I just had someone fight with me that “eds doesn’t follow medical definitions and terminology, including internal decapitation” and I just…. Like I don’t understand? I can’t tell if I’m just not understanding because brain damaged or what. She’s legit angry with me. But a medical definition is a medical definition. Internal decapitation is an incredibly specific medical event seen on imaging. It’s not something fluid.

I’m just confused.

Aaaaaand after that interaction, I had someone claim to me that loss of neck curve was automatically cci. Most of the world has some loss of curve because of looking at computers and phones all day. And another person claim they walked around with a dislocated vertebrae for seven years. Which is humanly impossible.

That’s absolutely fine if they don’t know! I provided the correct medical info but was told I didn’t know what I was talking about and cursed out. I want to step away from the cci group specifically but all the other mods/admin have too much health shit going on and I don’t want to leave them hanging. But I’m about ready to walk away after the last few days

infectedwithnyanites:

shadow-banned-the-hedgehog:

Or water fountains, public washrooms, outdoors tables, etc, etc

Notice how removing seating doesnt actually prevent people from sitting it just makes them uncomfortable and makes public spaces more hostile it doesnt actually work at controlling their behavior not till a pig comes along anyways and they’ll harass a homeless person/teen whatever they’re sitting on.

(via anxious-and-in-pain)