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People always be telling me “suicide is a permanent solution to a temporary problem” when I struggled deeply with depression. I overcame my suicidal thoughts only to become a chronic pain patient 3 years later. My pain is temprorary but only because I will die one day. As long as I live this pain will be permanent.

So now what?

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Me after having doctors tell me since I was 8 that I was faking it: maybe I don’t really have crps. What if I was lying and fooling everyone, even myself?

Me laying in bed and my knee feeling like it’s shattering into little pieces: ok Jesus fuck, I definitely have crps. Goodness you didn’t have to do that!

(btw I have full body CRPS)

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My brother works at QT and he offered to get my mom and I a soda. Neither of us have left the house because we are both very high risk. So we would have to stay in the car, but at least we were getting out of the house.

So my brother (let’s call him M) goes in to get the drinks before he starts work.

And then I see this.

image

This is an image of a truck parked sideways and taking up the only handicapped parking available. They didn’t even have a placard.

I do, but like I said, neither my mom or I was getting out. But what if he had been? We wouldn’t have been able to because this person decided there want to be closer to the door trumped my ability to even get out of the car.

Btw I opened my window and took a picture right as they looked over to where we were parked. Right after that they moved to park (the same way!) where there wasn’t handicapped parking. Definitely better but still annoying.

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Do NOT ask for a ride in my wheelchair. I’m not going to get up and put myself through that pain just because you think it’s fun.

Let’s me honest, it can be! I love going down hills, and I love turning by putting the break down so I basically drift. That’s cool as shit and fun!

But you know what I can’t always do? I can’t run down hills. I can skip. I can’t jog. I can’t give piggyback rides. I can’t use a slide. I can’t do the cupid shuffle. I can’t look at stairs and just see them as stairs and not a huge obstacle to overcome.

I can’t go into shops because the aisles are too small. I can’t get to where I need to go because they don’t have an elevator.

I can’t do a lot of things, but that’s ok. This is my life and I’m happy with it. I’m happy to drift in a wheelchair and go down hills super fast.

P.s. don’t use it as a chair when I’m not in it.

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My body: okay so we’re going to run full tilt and body slam the wall

Me: literally why

My body: idk but I hope you’re fucking ready!!

Me: wait no-

Wall: *meets my shoulder in a collision as I trip over nothing going in the opposite direction I intended*

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Things in the head have challenging today. There is a lot of conflict between parts and things are blurry.

Our partner went back to work Monday so we suddenly went from having very little alone time to a Lot of time alone. Which is turning out to be a bit challenging given the current situation.

A lot of today has been occupied about internal debates about how we can help support BLM right now. There are parts that want to join protests and looked up protests being organized for this weekend. However, other parts are concerned that we would be a hindrance rather than a help due to our physical limitations. We also have experienced violence at the hands of the police before and have trauma responses just seeing a cop when out in public. Given the dissociative nature of these episodes, we could be danger not only to ourselves but those around us if we were to freeze up and not follow orders.

As such, the overall consensus seems to be that we shouldn’t go to protest, though there is still a lot of disagreement amongst parts.

We’re trying to find other ways to get involved but have continued to run into barriers this far. It’s proving to be a painful reminder of how disabled we are. Our ability to type is limited by fingers that constantly sublux. We’re limited in even our time sitting up each day. And those are the good days.

It hurts to realize how little we have to give. We do so little and yet struggle to do more. Between our mental and physical disabilities, we are just so limited.

And beyond the limitations from disability, we have very little power in our own life, let alone the world. We are mostly housebound in the middle of nowhere. We have no money of our own. We don’t have contact with anyone outside our family.

And that’s a whole other problem. Our father is a hardcore tr*mp supporter. F*x news is on constantly in the house. Even before recent events, interacting with our parents has been a struggle. They are so entrenched in far right ideology that they don’t listen to anything outside that bubble. Our father often tries to bait us into arguments by making offensive statements when in shared company. And it’s not safe for us to argue as we are dependent on them for housing. Not like arguing would make a difference. We’re automatically written off before we even speak. For the past week, I’ve mostly just been trying to avoid them because things won’t go well if I lose my cool in response to provocation.

I’m also struggling with parts who are convinced that all of this is a sign of the end times and are terrified. And I’m not really sure how to help them.

I just feel so helpless in the midst of everything happening. I want to help, to do some good, but I don’t know how to help in a sustainable way. Anything I can think of will likely lead to injury that would leave us even less able to help. fuck, just showering this morning caused one of our shoulders to sublux.

Anyway, this is rambling mess of messy thoughts, but it helps to express them in some way.

~a blurry person

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The African American Civil Rights Movement, the NAACP, the Black Panthers, and other Black activists literally paved the way for the passage of the Americans with Disabilities Act and all the other advances in rights and visibility for ppl with chronic illness and disabilities.

If like me you are a chronically ill or disabled white person know you were given your legal protections through various kinds of protests made possible by Black disabled activists.

We need to show up for the Black community in the kind of real, lasting way that they showed up again and again for the disability rights movement. Let’s continue to further this legacy of collaboration in every way we are able.

Here is a google doc with a lot of ways to help and a lot of suggested reading.

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My mom took graduation pictures of me with my cap and gown on, with my diploma cover, walker, and many bottles of meds to commemorate what I’ve dealt with this year and that I graduated in the midst of all my doctors appointments and daily pain, I think it’s really fun and cute. Should I post them?

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It’s really annoying when people only focus on my positives and not my negatives. I know I do have positives but just repeating them back to me isn’t going to help me overcome my negatives. It just makes me feel useless because my positives aren’t good enough to overcome my negatives even though I know that they are two separate things that can’t influence each other.

Basically what I am saying is that I don’t want praise, I want help.

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Personal drama with family has taken its toll these past few days. I am in more pain emotionally and physically than ever before and I’m just trying to survive these next couple of days. I am coping with a new level of pain I didn’t know possible and the brutal reality of my existence from now on.

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If your blood sample was lost because of an earthquake and global pandemic clap your hand 👏🏼👏🏼

I have been waiting for those tests for 2 months just to find out that the hospital never even sent the blood for testing.

Now we have to go AGAIN, my ortho is ignoring our emails and he has to “prescribe” PT so the insurance will cover it

Also, i kinda wanna ask for my spine and lung/ribs x-rays because they look cool as shit but idk if they will give them to me *sniff sniff*

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When can I have a second of existing with a quote unquote “win”?

I don’t want to only settle for only a second of a win. I, WE, deserve a lifetime.

We have to take those little wins, I know, but I swear I’d take the entire win of the championship of this life with you if I could!!!

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