#cripple punk

Maybe I like writing sweet romance about Reginald Hargreeves because I love the idea of someone being in love with me when I’m sad and depressed and crippled and autistic and gross

sarahbeara113:

To the people who couldn’t get out of their bed today, I’m here for you…

To the people who skipped showering because they didn’t have the energy, I’m here for you…

To the people who cried in agony through their shower, I’m here for you…

To the people who suffer daily but no one believes them, I’m here for you…

To the people who feel like they’ve lost or are losing their youth to their medical issues, I’m here for you…

To the brave people fighting for their health every day, I’m here for you, I support you, I believe you. Your feelings are valid, you are loved, and I will stand behind you.

tlsanity:

tlsanity:

Just presented a paper proposal topic over zoom, hood over head, 1 hour of sleep for 2 days, voice crack+constant stutter. Instead of weighing me down, those damn things boosted me.

The paper is about cripple punk. I was the very fucked-up definition of cripple punk, no worries about trying to look “appealing” or whatever the hell. Pajamas. Purple eyebags. Tripping over words. I didn’t give a fuck.

I went full on how the disabled youth are told that it’s their fault being disabled.

Or when they stay up late, drink or smoke; it’s suddenly “the reason they are disabled” and how they “don’t put up any effort to get better”.

It’s about how the whole family can get together and fight about “who the disabled DNA belongs to”, the parents that see their children as burden, the people that wish patience to the loved ones of us.

It’s about how we are seen as burdens and nothing else.

People don’t want to see us because they don’t know how to interact with us.

They call us fakers, “not disabled enough”, “too disabled”.

They deny us medication because “a positive mindset will solve it all”.

We want to have a career? Living in constant fear about how much the appearance of a cane can lower the chance of getting hired.

They call us a waste on earth. I, too, believed that I was nothing but a fucked-up life. Then I found cripple punk.

I went full on how accepting our disabilities as our identity creates a culture of acceptance, away from the goddamn comments of the ableists. I talked about how it literally saves lives, because it saved mine.

Professor had nothing to add, nothing to criticise. Full permission. I’ll be on it!

Hello! I’m Karl.

I wrote the paper proposal. The title of my paper is: “Cripple Punk” and the Reclaimed “Cripple” Identity Among the Physically Disabled Youth.

For the actual paper, I need to gather data. Here is a 26-question questionnaire, if you’d like to volunteer. After completing it, you can send me an ask with the “form completed” screen’s screenshot attached, and ask for an art request as my gift of gratitude.

The questions aim to gather data about how physically disabled people experience ableism in many aspects of their lives and how cripple punk has positively affected them to accept their disability as a part of themselves. Some questions are optional. You are allowed to add things in multiple choice “Other…” options as well. There are a few open ended questions that have no limit of words -a word or a whole paragraph, all your choice. There’s also a space at the end if you’d like to add anything (or vent, if you’d like) and even specify if you’d like a certain data of yours to be excluded from or included in the study.

All my gratitude. Here it is:

https://forms.gle/8YYcEtM1kMxfUk5c8

-Karl.

I thought getting an Ehlers Danlos Syndrome diagnosis would be straightforward because of the Beighton Scale, but boy was I wrong. 

My rheumatologist said that my skin matched the criteria for EDS, but she didn’t think I was hypermobile and didn’t think I had EDS after examining some of my joints. 

A few months later my pulmonologist, who sees a lot of POTS and EDS patients, examined my skin and my joints and said I was hypermobile. He said I probably had EDS and referred me to a geneticist. 

I mentioned my hypermobility to my cardiologist, who also sees a lot of POTS and EDS patients, and he examined me and agreed that I’m hyper mobile. He went on to say, though, that I “don’t want an EDS diagnosis” because the symptoms of EDS are hard to deal with. I wanted to tell him “yeah, I know, because I’m dealing with them” but I kept my mouth shut.

Three doctors shouldn’t have three different opinions about what my diagnosis should be.

We’ll see what the geneticist says in August. 

It’s more than ok to switch doctors if you feel like the care you’re getting isn’t adequate. It’s not unusual for chronically ill patients to see a dozen or more doctors over several years before they find one who can properly diagnose and treat them. Don’t let anybody make you feel like a “doctor shopper” or a difficult patient just because you want good medical care - after all, we wouldn’t have to see so many doctors if more of them did their job well.

Back when I was in school, a teacher who knew I wanted to be a writer told me that my chronic illness would make me a wiser, better writer. I said something polite in response, but now I would probably tell her this:

I would rather be well and have absolutely nothing to write about. Being sick sucks. Illness has no perks, benefits, or silver linings that I wouldn’t trade for good health. 

Parents with disabilities shouldn’t be discriminated against, but all too often, they are.

According to talkpoverty.org, disabled parents are more likely to lose custody of their children during a divorce than non-disabled parents. In 37 states, parents can have their custodial rights revoked solely because they’re disabled. Child welfare services remove children of disabled parents at higher than average rates, and disabled people also face discrimination when adopting and fostering children. 

The vast majority of parents with disabilities are capable of providing a safe, loving home for their children. Families shouldn’t be separated because of these discriminatory practices that are based on outdated, ableist definitions of parental fitness. 

(Source: https://talkpoverty.org/2015/07/31/parents-with-disabilities/)

Our healthcare system is too complicated, and that negatively affects chronically ill patients. 

There are too many different health insurance plans to count on one hand: Medicaid, Medicare, HMO, PPO, EPO, POS, HDHP. It’s hard for patients to figure out what all these different policies actually cover. 

Insurance companies may require patients to jump through hoops before they’ll cover more expensive treatments. Patients have to try multiple medications and undergo less expensive (but less accurate) medical tests before insurance companies will cover the higher cost therapies and tests their doctors want to prescribe. Sometimes, insurance companies will even try to deny coverage for services they’re contractually obligated to cover. Patients with chronic, complex illnesses often have to fight and appeal insurance companies’ decisions, and may even have to work with patient advocates to get proper treatment. This process eats up a lot of energy and time that chronically ill patients don’t have. 

Because of how complicated it is, our healthcare system has higher administrative costs than healthcare systems in other developed nations, leading to higher costs for patients. This hits people like me with chronic illnesses particularly hard. 

Even if doctors efficiently diagnosed and treated chronic illnesses (and studies have shown time and time again that they don’t), navigating the healthcare system would still take up a considerable amount of a chronically ill person’s time and energy. 

Seeking out a diagnosis and treatment for a chronic illness shouldn’t take years and shouldn’t feel like a part time job. Something needs to change. 

I don’t think disabled people should lose their benefits when they get married. 

Adults who became disabled before age 22 risk losing their benefits when they get married. Any benefits they receive through a parent’s work record are discontinued, and if their spouse makes too much money, they can’t receive SSI either. All disabled people on SSI, regardless of when they became disabled, risk losing their benefits by getting married. The only people who are guaranteed to keep their benefits are those who worked long enough to receive SSDI through their own work record. 

Marriage is an important religious and social milestone for many people, and it confers important legal protections upon couples. I think that all disabled people should be able to get married without losing their only source of income and their financial independence. 

Don’t beat yourself up if you’re chronically ill and can’t exercise as frequently as you’d like to. 

Exercise is often recommended as a treatment for chronic fatigue and pain, but those symptoms make it difficult to exercise. A lot of people with chronic pain and fatigue, myself included, experience an increase in symptoms during and after physical activity. It can be hard to find the time for exercise if you know you’ll need a few hours to recover afterwards, and it’s difficult to motivate yourself to do something you know will leave you in even more pain. 

Doctors and mostly healthy people often don’t understand these challenges, but don’t let anyone make you feel guilty about how much you do or don’t exercise. Try your best and don’t stress. 

Opening up to other people about your chronic illness is challenging because you never know what response you’re going to get. 

Some people respond with skepticism and believe you’re being overdramatic when you talk about how severe your illnesses and symptoms are. Most people want to understand and mean well, but simply don’t know how to respond to illness. People often make unhelpful suggestions like “think positively” or “try probiotics” when what we’re looking for is some validation and emotional support. “Sorry, that sounds really hard” is a much better reaction than “you should try yoga,” but we hear the latter more often. 

Because dealing with chronic illness is so challenging, we need even more emotional support than the average person. Getting that from friends, relatives, and even mental health professionals is hard because so few people truly understand chronic illness. Oftentimes, our need for emotional support and social connection goes unmet, which adds to the already heavy burden of chronic illness. 

Asking kids “what do you want to be when you grow up” is damaging, especially if they’re disabled. I feel like I’ve lost a part of my identity because my disability has prevented me from working. If I hadn’t been conditioned as a child to believe that work is the most important part of people’s lives and personalities, I wouldn’t feel so lost and incomplete as a disabled adult. 

Health insurance companies shouldn’t be able to pick and choose which treatments they’ll cover. I just got diagnosed with a condition (Small Fiber Polyneuropathy) that can be effectively treated or even cured with IVIG. But because IVIG is expensive and my doctor has a hard time getting insurance companies to cover it, he’s putting me on other medications that are much less effective. Health insurance companies shouldn’t be allowed to prevent doctors from properly treating their patients all in the name of profit. 

Me: *moves from the bed to the couch*

Me: “Life is about celebrating every small victory!”

Abled people will be like…

new friend ✨

[ID: digital drawing on a muted blue background of a yellow keith haring style dancer in a simplified electric wheelchair one hand on the joystick the other up in the air, one leg kicking up as well /id]