I think the obsession with having been “born this way” largely stems from the idea that you need to be “innocent” to be guiltless. 

If something is weird then you need to have no control over it, otherwise it would be mandatory to fix it. If I said that I had control over my stimming and could stop it at any time, people would request I do so. Not for my comfort but for theirs. If I said that I had control over my gender and could be something binary or maybe even cis, people would request I do so. If I said that I have control over my sexuality and could make myself heterosexual, people would request I do so. If I said I could control my attraction and could make myself monogamous, people would request I do so. If I said that I could control my disability and could choose to stop a flair up in its tracks, people would request I do so. They would never ask out of the goodness of their hearts, they would always be asking because I was annoying, concerning, distracting, or inconveniencing them. 

Diversity is sometimes only tolerated if you have no control. If you have control, rules will be made to stop it. Hair will be straightened, clothes will be standardized, languages will be shushed, interests will be squashed, weight will be lost, and so on and so on and so on. Proving that we were born this way replaces the more obvious, that we’re okay this way. I don’t need to be a helpless victim of my differences to be forgiven for them. My differences aren’t crimes. 

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Basic Respect for Cane Users

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Pic 1: A title card that says ‘basic respect for cane users’.

Pic 2: Not all cane users are: physically weak, slow, elderly. Some cane users can: run, lift heavy things, ride bikes, skateboards, etc. Cane users are not all the same.

Pic 3: Do: move out of the way for someone using a cane, give your seat to a cane user on public transport, offer to carry something for your friend or co worker with a cane, ask cane users what their access needs are, treat cane users with respect. Remember that not everyone with a physical disability uses a mobility aid.

Pic 4: DON’T: touch cane users without their explicit permission, make assumptions about whether someone ‘really’ needs their cane, give unwanted advice about someones disability, make a cane user feel bad or like they’re an embarassment. Remember: people might not use their cane full-time, you can’t know if someone is faking.

Today I got to use a wheelchair for the first time in my life. I have chronic pain, pain that gets worse from walking or standing. I’m visiting my parents for the thanksgiving and they had rented a hospital style chair so they could push my grandma around. But after grandma left, we went to a museum, and I used the wheelchair. 

I was brought to tears. I hadn’t been able to really enjoy an art museum in years. It just hurt too much. I always spent more time looking for a place to sit or thinking about my pain than I did looking at art and thinking about its meanings. But today was wonderful. Usually, even a low activity day where I’m walking will get me into the 6 or 7 range pain wise by night. I get high every night so I can sleep. Today I stayed up late, stone cold sober, for the first time in years. Why? Because my pain was so low. I just go to enjoy myself instead of numbing up. Wheelchairs are freedom. God they are freedom. I felt more alive today than I have in years. The chance to just enjoy my day, pushing myself around, free from pain was amazing. 

accessibility, or the lack thereof, shouldn’t be the burden of disabled people to fix

Me: sitting in front of an Abled person literally quoting disability case law while explaining to them exactly how they’re breaking the law and exactly what the consequences will be if they don’t fix the problem

Every Abled in history: Ah yes, I, a person with exactly no grasp of disability law, am clearly the expert here. I’m so confident I’m right that I’m willing to gamble my whole business/career on it.

Teaching ableds to use their able bodied privilege for good is so hard. Because disabled people are so far down on the list of things most, even passionate radicals, care about. What if every time you climbed stairs you went “this is privilege?” What if every time you stood in line you went “this is privilege?” What if every time you reached for something on a shelf at your eye level you went “this is privilege?” 

What if every time you entered a room you thought “are other people able to enter this room?” and thought “are other people able to perform the tasks this room requires from me?”

I recently saw a pain scale with the caption “if you can still talk, your not at a nine” and it really really bothered me. One of my doctors (who works extensively with teenagers with CRPS) said that one common theme he sees in his patients is a complete lack of reaction to pain. He told me that when he performs procedures and tests that are objectively extremely painful, often the teenagers will be smiling and cracking jokes, even though he knows that they are in excruciating pain. At nine I can carry on a conversation (not very well, because at this point things start to get really cloudy for me, but still a conversation). During my nerve conduction study (If you’ve ever had one you know how awful it is, and if you haven’t, it involves a six inch long eighteen gage needle stabbed deep into your muscles over and over while you clench and relax them as instructed.) i chatted with the nurse and played games on my phone. It wasn’t that I wasn’t in pain, it was just I was also outside of it. For teenagers with chronic pain a disassociation from themselves and their bodies is common, even expected. If I “grounded myself”, saw myself as In my body and of my body and nothing else I don’t know how I would survive. In order to live, to get out of bed or wash my hair or put on pants I have to separate ME from my body. It’s how I can pop my shoulder out of socket and put it back in during a conversation. It’s a matter of survival. And I’m tired of people saying that my pain isn’t real or valid because of it.

For Able-Bodied People

Repeat after me:

“If I touch a disabled person without consent, they are entitled to their anger.

If I grab a disabled person’s mobility aid without consent, they are entitled to their anger.

If I refuse to consult with a disabled person about their body, they are entitled to their anger.

If I do any of these things, regardless of if I’m trying to do the right thing, I am an asshole.

I’m sick and bloody tired of people grabbing me, and then people glaring at me like I’m the asshole in the situation; when your spine and your mobility is at stake, we’ll fucking talk.

Able-bodied people, you should be reblogging this.

You should be calling it out when it happens.

I am not confined to my wheelchair. More than half of wheelchair workers can stand and walk at least a little. Quit harassing us when we do. But even for those who can’t stand at all, a wheelchair is not a metal cage or medieval torture rack. It’s a custom medical device that frees us, that allows us to live fuller lives.

I had to fundraise for my wheelchair because my insurance didn’t cover durable medical. While I waited to get a wheelchair, that’s when I was confined. People had to come to me. The only place I could go was the grocery store, because they had scooters. Once a week I got to spend an hour outside the home. Other than that, I was unable to leave the house.

My wheelchair freed me. I could work until I got too sick (but many people work full-time in wheelchairs). I can visit friends, go grocery shopping by myself, go to the park or museum, excercise, go shopping. I can live life. It’s a changed life, but it’s no less full than an abled person’s life. I can’t work anymore, and I need more sleep. I’m in pain all day and can’t visit for long periods. I can’t spend all day at the museum anymore. But that’s my ME/CFS and fibromyalgia, not my wheelchair. I’m not confined. Without my wheelchair, I wouldn’t be able to do anything but sit on my porch.

In truth, the only thing confining me is lack of accessibility. Sidewalks that are more crack than concrete. Entrances that are non-ADA compliant. The lack of ramps and accessible parking. And society’s lack of care. The people who harass me for standing up in my wheelchair to grab a bottle of shampoo. The people who make disability benefits so hard to get. The businesses that ignore the e-mails I send asking for a $49 fix to their entrances so I don’t have to rely on two strong folx to get me through the door. The ableds who spread myth and misunderstanding. When I can’t get a parking spot, I’m confined. When there’s no ramp, I’m confined. When I can’t get the benefits I need to live, I’m confined.

Wheelchairs are not a prison sentence. The first thing I did after my wheelchair arrived was drive (all by myself!) to Home Depot. I bought a set of Allen wrenches for the chair I named Loka and then just rolled up and down Home Depot’s long, tall aisles. I rolled until my arms ached. I did it because I could.

Don’t ever look at a person in a wheelchair and pity them. They’re lucky to have a wheelchair. Could Stephen Hawking have done all the great, world-changing scientific work he did without his wheelchair and voice synthethiser? No, of course not. His wheelchair meant greater freedom; the opportunity to travel and spread scientific learning and inquiry. It meant getting around Cambridge, doing interviews, meeting the public. It meant being a more active father and husband.

Our wheelchairs drive our lives forward, literally. We are no more confined to them than you are to your sneakers.

One thing nobody teaches you is how politicised being disabled is. Your whole existence being called a waste of resources. Your whole worth being boiled down to whether you can work. If you can, you’re not disabled and get nothing. If you’re not, you’re lazy and deserve nothing.

Accessibility is seen as a burden and us demanding too much like the greedy people they claim us to be. No handouts! No Handouts! We are invisible and subhuman. We are the other. We are portrayed as burdens to society for simply wanting to exist in the world as they do.

The ability to live week to week is constantly in jeopardy. Lost jobs from sick days. Rising costs of medical care and accommodations. Your government assistance becomes a talking point and a target. People rallying for you to starve instead of paying any taxes to your care. One day your means to live just disappears without fanfare or your input. ‘Austerity measures’ being levied on us for being ‘leeches’. They might not kill us directly but they don’t care about leaving us to die.

Right to die advocates fighting valiantly for euthanasia but doing nothing about disability rights. Nothing about accommodations. Nothing about accessibility. Nothing about subsidies or in home care. They’d rather give us the ability to die than allow us to live. Because we are tragedies.

Burdens.

CripplePunk self-portrait 

[image description: a digital artwork depicting user ogrefairy - a fat  light-skinned wheelchair-user with a “The Future Is Accessible” crop top, surgery scars on her knees, reddish-purple lips, thin framed glasses, a dark brown bob cut, and a floral tattoo on her wrist. She is giving a peace sign and a gentle smile while sitting in a manual chair that has been decorated with purple and black zebra patterned tape. Matching forearm crutches sit behind her backrest. The background is Art Nouveau inspired abstract pale purple with a floral wreath of princess lilies and has flowers that match those on her tattoo. The whole image gives off a gentle, soft tone with layers of maybe assertive resilience built in.]

i hate that medical devices to accommodate disabilities are so stigmatized!!!

wheelchairs are normal! walkers are normal! canes are normal! braces are normal! speaking valves are normal! prosthetics are normal! feeding tubes are normal! catheters are normal! colostomy bags are normal! central lines are normal!

it doesn’t matter HOW someone became disabled, or WHY they need a device, it’s just important that they HAVE it and their life is BETTER!

(if i left anything out that you would like to add, feel free!!)

Hey

Being able to manage without a mobility aid/assistive device/etc doesn’t mean you should have to.

You’re allowed to use your cane or wheelchair or whatever else even on good days.

There are SO many reasons to use your aids, there are more valid reasons than “I can’t without it”

Just three for me specifically:

-not ending up overly exhausted and in worse pain by the end of the day

-not falling when I get vertigo and my vision blacks out

-not subluxing my hips or rolling my ankles constantly

Which are all things I can deal with, and I have!

But I don’t have to deal with those things. That’s not the price I have to pay for living. I am allowed to not want to deal with those things, and to do things to avoid them!

Never be sorry for using an aid. If people look at you weird, stare them down and make them regret it. You have every right to use your aids.

Don’t forget that.