#disability positivity and venting

[atley01]

This disability pride month, I'm left with conflicted feelings.

Whenever I post about disability-related things online, I always try to give my community optimism and hope. I know how much suffering can result from having health issues, and sometimes, you just need a break from dwelling on it. I want to provide fellow disabled people a break from the slippery slope of doom that dwelling can lead to.

But the more I do that, the more that I fear I'm showing an inaccurate representation of disability. That I am painting an image of disability to be something "struggle free all the time and nothing more than a 'unique character trait.'"

Being disabled isn't easy. You're living in a world not meant for you. And you get reminded of that every day. You might think its easier to mask if you're able to, but all that does is dig you into a deeper hole. Sure, I can suppress my tics. Sure, I can mask my autism. Sure, I can try my best to hide my POTS symptoms. I can act like my tinnitus isn't giving me headaches and making it difficult to function in society. I can act like my chronic pain isnt making me want to collapse to the floor. I can pretend I dont need a mobility aid.

Sometimes, though, you arent given the choice on if you hide it or not. And then that whole facade tumbles down. And you're left feeling a mix of embarrassment, shame, and anger. Embarrassed to be seen like that, shame that you may need help, and angry that your body did something against your will, again.

I started working 7 months ago. The first 3 months, I was so happy and proud of myself for being able to have the privilege of holding down a job. By the 4th month, I had some doubts about how long I could hold my job down. Here I am, 7 months in, and Im realizing yet again that I am not as able-bodied as I expected myself to be. The thought that I may have to find a less physically demanding job terrifies me. I feel immense shame for struggling to handle a part-time job physically.

I think what really solidified this for me was when I passed out at my job last month. It wasn't as bad as it could have been, but the fact of the matter is I blacked out, and I didn't get to decide I "wasn't going to." That scared me. Or maybe what solidified it for me was when my tinnitus prevented me from being able to understand customers and coworkers. Maybe it was when I had to mask and suppress a tic attack to the best of my ability. Maybe it was when I touched something that triggered my sensory issues, and I was simply too busy to regulate myself, so I had to spend my time dissociating to forget the feeling.

When you're young and you're disabled, it's difficult to be taken seriously. People think you're being dramatic, or they think its something you're doing to be causing all the health problems. "Have you tried changing your diet?" / "It's growing pains." / "Your leg hurts? Did you bang it on something?" / "Give it a few days. You'll feel better." The search for accommodation and validity is made even harder when doctors refuse to listen. Sadly, the medical system is not immune to being abelist. You can't request accommodations if doctors document you as able-bodied.

I have never claimed to be a voice for my community. I am a voice for nobody but myself. Maybe in sharing my Expirences, someone else can feel less alone. Or maybe this is unique to me alone.

Am I proud to be disabled?

I think that in some ways, yes. I am proud of what I have accomplished in spite of my health. I am proud that I have found tools to manage my health. I am proud to say I am a part of an amazing community such as the disabled community, and I am proud of what we've accomplished.

I dont think I am proud of the abelism, shame, or pain through. Im not sure anyone could be. If you are, I truly envy you. I am proud that despite the pain, I push forward. But I wonder if that's an unhealthy habit to encourage. To push my limits and ignore my body, screaming at me to give it rest.

This disability pride month, Im reflecting on my health and how it affects me, and taking the time to be patient with myself. Because Im doing all that I can, I do not need to hold myself to the standards that able-bodied people are held to. That is an impossible standard for me to reach.

Im going to celebrate the small victories. This time last year, I was passing out multiple times a week, and I overall had more tic attacks. Now, my fainting has been almost non-existent, and my tic attacks- while they do still happen - have noticeably been less frequent.

If you made it this far, please be kind to yourself, and happy disability pride month. You are allowed to be upset by the things your disability puts you through. You're doing the best you can. I see you, and Im proud of you.

[spaghettimakesflags]

asexual npd flag

[babey-lewis]

I wish my health (physical and emotional/mental) was better. I'd really like to take on a little, but I just can't commit to that at the moment with everything going on. I wish life was easier, so we could all be friends and take care of each other.

[the-intersex-experience]

Welcome to a blog dedicated to intersex experiences. We are bodily a mixed poc, disabled, tfemmasc intersex, system. You may call us ᎠᏁᎶᏗ. lim/liminals, xe/xem & 🩷/🩷s work for prns.

this blog is safe for: intersex tfems/tmascs/tfemmascs. intersex poc. intersex systems. disabled intersex people. good faith/mspec mono labels, pcos, palestine people, etc!

This blog doesn't personally respond to/interact with: perisex shi/hir users, terfs. pro.ship, rad.queer, winter.punk. racists, zionists. "transintersex" perisex people, and endo/demo/mixedgenic systems.

questions / conversations are fine, but be aware our stances/opinions are unlikely to change unless we accidentally do something problematic without realizing. be aware we are not a medical professional or expert on everything intersex! we are a young intersex adult that wanted more intersex spaces to exist.

you can send things as "the intersex experience is", "the poc intersex experience is" etc. free to drop that part if you want to be more serious or vent/rant. please keep in mind all intersexism, harassment & hate will be blocked.

taken anon emojis: 🪻

other blogs to check out!! @our-transfeminine-experience , @our-transgender-experiences , @our-trans-youth-experience @our-transmasculine-experience

[crip-writing-shit]

you use my stars to construct your constellations

do my scars spell it out for you?

do my legs read;

brave   

or

weak?

strong

or cowardly?

does my story work for you? 

is it neat and well packaged and clean?

is it messy and gritty like all must-see tv?

what do you see in my calendar? 

the hour long commutes?

the doctor after doctor?

or the time I left open for you?

[positivity-for-disability]

Gonna be personal for a moment here, I apologize if it isn't very positive.

I was just declined social security for disability. I have also been stuck in a flare up, and its been storming for a few days now. I have two monthes before I'm kicked out of my current home, and so far everything feels stacked against me.

I don't know what to do anymore, it feels hopeless.

Anyone who would like to, share some good news. Share some hope, anything is appreciated. /nf

[tiredtourettic]

Happy vent!! :]]]]

In 8 months I'm going to be 18. In 8 months I will be buying and using crutches and a wheelchair!!

I'm so happy!! I already have a cane (thanks to my super duper handsome boyfriend) but since my parents don't believe me when i say I'm in pain I can't use it most of the time. My mobility has gotten worse due to not using the cane, and so when I'm 18 I'm going to go to my GP and get a referral to get tested for hEDS and if I can also fibro and POTS, and when I have my diagnos(is/es) I'll use my aids at school as well!

My school is pretty disability friendly, when I applied I had to say if I had any disabilities but since I don't have a dx I said none (my parents were there). But there's a lift and all so that's amazing!

I only hope I won't get kicked out of the course because of my illness, because it's physically demanding (3x sport every week, I wonder how I'm gonna do that..) but we'll see when we get there! For now I'm just gonna allow myself to be happy.

[lets-all-calm-down-a-bit]

I finally saw an orthepedic doctor! They immediately clocked me as hypermobile, flat footed, and with POTS. None of that had been on my chart because I guess my regular doctor wasnt an expert on that stuff, but now it is!! It's really a breath of fresh air for me. I'm now diagnosed, legally, in the chart: disabled. That may sound bleak, but I feel so relieved. I have horrible imposter syndrome, so unless someone tells me I'm fucked up, I feel like im lying, even while lying on the floor shaking from the pain. I feel so free. I'm being refered to a physical therapist. I feel amazing. For the first time in 4 years, I know I'm right. I know I'm not a liar.

[crazypossumman]

I don’t want to “normalize” mental illness per se, I just want my friends to realize that mental illness is what it is. Yes, it blows. That’s because it’s an illness: often a chronic one that requires lifelong treatment. But it’s not really a “flaw.” It’s a thing that just exists, and it should be treated as a neutral entity. We should look at depression and anxiety in the same way that we look at other mental illnesses and disabilities even though they aren’t often labeled to be as “severe.”

When you’re feeling depressed, it’s not your fault or something you did. A diabetic doesn’t choose to have low blood sugar. They may make other choices that affect their blood sugar, or they may do everything exactly the same that they do every day. You don’t blame or chastise them for having low blood sugar; you treat it to the necessary extent and you both move on. Depression should be treated the exact same way. It’s not your fault. You didn’t do anything wrong. You’re not a bad, broken, or ungrateful person. You have an illness, and you are suffering symptoms of said illness. It’s as simple as that, and it should be treated just as simply: provide treatment for the symptoms to the necessary extent. Forgive yourself for the things that weren’t your fault. Move on to your better life.

[insanecreetur]

Why does menstruating have to make ALL of my symptoms and problems worse.

I need a fucking BREAK.

PLEASE IM BEGGING

[the-grape-entity]

When a bad day at the end of a few bad weeks turns into being terrified you’re getting worse and terrified you’re never getting better

[spaghettimakesflags]

aromantic npd flag

[savage-rhi]

.Magenta.

[lousiee]

got my final paycheck 2day and im still surprised i got managerial pay for like 3 of the days

[things-you-may-need-to-hear]

You ever see a video of someone dancing and are filled with all-encompassing grief.

[iwanttorundirectlyintothesun]

fuck the ndia

no, seriously, these bastards are so incapable of admitting that they don't actually care about the Australian people that they want to blame people who don't follow their (self-admittedly) complicated instructions to the dot on the i's for "wasting money" by accruing aids that they actually need. they punish people by refusing to help people buy clothing accommodations, mobility aids, transport and then making them wait for replies. a kid died. a 19 year old on an ndis plan died in their home because the ndia didn't help, didn't give them the support that they needed to the point that the last thing the kid communicated to anyone was a text asking if the ndis responded to their request for 24 hr support.

Menstruation products are only available as a support if they are deliberately and specifically required by the disability, not if your period is affected by your disability, not if you have a particularly difficult menstrual cycle that is exacerbated by your disability, only if you have an issue that is specifically and evidentially caused by your disability.

They want thousands of dollars worth of reports that list each thing wrong with you and the way you live, they want several years worth of doctors visits and personal accounts and bank statements. All so someone that doesn't even have a medical degree can tell you that it's not cost effective. Can tell you that under rule 34 of the 2013 ndis act they can legally say, "sorry, you're not worth the money".

And then when you give them that truly unnecessary number of personal details and evidence they don't even look at it. They don't read the letters from the specialists. They ignore evidence and say that it doesn't matter that that recommendation came directly from a professional/specialist. They don't look at the receipts and testimonials and papers you've found and researched on your own time to prove that this aid will help, this prescription will help you live a better, calmer, happier life not marred by as much pain and suffering. A life that's living and not just surviving.

All because they don't care, because the government made some stupid decisions decades ago and every time they get an opportunity to change they dig themselves deeper and say don't worry about the inflation, don't worry about the cost of living, don't worry about how your body and your country are failing you.

People on a disability scheme like the ndis according Australian Institute of Health and Welfare are twice as likely if not more to commit suicide than the general population. Men who are disabled are more likely to commit suicide and more likely to consider it (doi: 10.1093/pubmed/fdy197).

They hire lawyers that call in soft voices to tell you that you need to resubmit years worth of evidence, that "that's not what the agency is for" when you ask for the recommended number of hours. And legal aid is no help, they want you to wait until you're booked until you ask them for help even when you've been told specifically to ask them for help. And because this is happening all over, the support workers and advocacy groups are overrun and overworked.

The ndia only cares if it will make them look good on paper. The ndia will tell the general population "look how much money we saved" while the disabled looks on in agony, while they are denied medication, support, aid, transportation, therapies and god knows what else.