cripple-problems

The real effects of saying not everything has to be accessible

You are disabled. You go to a meeting about an activity you’re interested in. There is no way for you to physically enter the building unassisted. There are no funds to change that. They tell you “Not everything has to be accessible. Go try something else”

You are disabled. You go to a meeting about an activity you’re interested in. Your accommodations slow down and affect others enjoyment. Other members tell you that your accommodations are special treatment and unfair on the rest. They tell you “Not everything has to be accessible. Go try something else”

You are disabled. You go to a meeting about an activity you’re interested in. Members probe your medical history. Some are scared of your conditions and appearance. Members deliberately test and provoke your conditions for laughs. You are called a faker and a tax burden. They tell you “Not everything has to be accessible. Go try something else”

You are disabled. You go to a meeting about an activity you’re interested in. Members refuse to help you because they don’t think the disabled are capable of this activity. They tell you “Not everything has to be accessible. Go try something else”

You are disabled. You cannot drive or take public transport to the event. You stay at home.

You are disabled. Your irregular attendance due to health is seen as a detriment. You stay at home.

You are disabled. You realise very few groups will accept you because they think its fine to turn you away because others must accept you, right?

You stay at home.

6

I’m so sick of hearing “why is she pretending to be disabled” “she must’ve stolen that mobility scooter” “I saw her using crutches the other day she doesn’t need a wheelchair” “are you sure she’s not just doing it for attention?” “She can move her legs, she’s not disabled!” Etc.

Do you really think I would sacrifice my independence to fake being disabled? Do you really think I’d pretend to be ill in stead of working meaning I can hardly afford to eat? Do you really think I would spend so much money on all these stupid things? Give up showering/bathing every day? Wear these awful looking very uncomfy splints? Make it so I can’t even get to my lessons? Put myself through all the physical and mental pain of not being able to walk?

No I am not paralysed. Yes I am disabled. Disabled does not mean paralysed. I have Ehlers Danlos Syndrome, chronic fatigue and chronic pain. Just rolling over in bed makes multiple joints come out. I can walk a couple of metres, but it’s extremely painful, extremely exhausting and often extremely dangerous. Why should I put myself at that risk because I’m not “disabled enough” for you.
When a footballer falls to the floor screaming in pain because their leg or arm or whatever dislocated? That happens to me countless times a day while doing ridiculously mundane tasks, I don’t scream, I put it back in place and get on with my life. Do I need to start screaming each time for you to understand? Because I promise you it hurts just as much.

I’ll give you a walk through of my average day just around the house. I wake up and I’m still more exhausted than you’ve probably ever been. I desperately try to go back to sleep as the pain and exhaustion are so overwhelming. After about an hour of trying to go back to sleep I give up and have to roll over. Then I realise if I stay in bed a minute longer I’m going to wet myself as the neck of my bladder isn’t held up correctly. So I have to walk five metres with my walking stick to the loo, often screaming or crying in the process. Then I have to try and get my shorts/leggings/whatever down without dislocating something or falling over, all the while trying not to wet myself. Once I actually manage to pee I sit there for about ten minutes because I can’t see properly or I can hear the blood in my head or just generally because I can’t make it back to bed. I can’t even brush my teeth most of the time. When back in bed I spend about two hours staring at a plate of food trying to force myself to eat but it’s so. Damn. Difficult. But if I don’t eat, I can’t take my pain meds and I’ll also get ill. Then an hour eating less than a toddlers size meal. No knives and forks though, oh no because I can’t hold them. Then I have to take seven pills. I spend about another hour begging to fall back asleep but I can’t. Then the pain meds kick in and I’m in a lot of pain but no longer agony. I get my carer to make me two hot water bottles, I can’t do it myself as I can’t hold the kettle and it would take me twenty minutes to get to the kitchen. I then decide if I should try to get changed today, normally a no because it’s too difficult. I can’t ask my carer for Help as she already complains about having to do so much. I watch netflix despite being too exhausted to pay attention. I do five minutes of physio with a yoga ball, then pass out. Wake up again and find a cold dinner lying there. Don’t eat it and feel guilty as fuck. By this stage I would’ve been up a few hours and gone to pee at least ten times. Gets to about 7pm. Wonder if whether another day ontop of the couple of weeks I’ve gone without washing will make a difference. How am I supposed to get up and down stairs safely? I don’t. Let’s say today is that day. I struggle up the stairs. Get to the top and spend say ten minutes trying to breathe normally again and work hard to keep my eyes open. Sit down in the bath to wash my hair badly then let the bath fill around me. Given up on shaving my legs etc as while I love super smooth skin, it’s difficult, dangerous and time consuming. I spend about ten minute in the bath then realise I just want to get back in bed because it hurts so much and I’m so so tired. Get out and spend half an hour drying and putting on a dressing gown. Go downstairs. Fall over in the process, I’ve fallen in every way imaginable now. Get back in bed. Wish I had the energy to play with my pets. Sometimes try, furthering the pain and exhaustion. I lay in bed for the rest of the day wishing I could just sleep.

On other days I also have to juggle the hospital, bank, supermarket etc.

How dare you say I’m not disabled enough. I go to hell and back every day and I’m fucking amazing for surviving. Fuck all of you ableists. Fuck you all.

10

I got my first set of autumnal photos back from Fusco Photography and I absolutely love them. Autumn is probably my favourite season and these photos perfectly capture why.

Getting photos like this are so helpful in getting me to accept every part of myself with all of my mobility aids includes. I’m disabled and fat and sometimes I feel a bit down given that this time last year I was an athletic dance teacher and aerialist but things like this really help me love who I am now, illness, weight and all.

My name is Lizzie, disabled and plus size, and I am chronically fabulous.

I’ve just started to hate those stories and videos of like “girl learned how to walk again after 10yrs in a wheelchair!” Because even though that’s great and should be celebrated, there’s a pressure that ALL disabled people will do that, and if you don’t magically get healed one day, you aren’t trying enough

4

« Dear Daniel Radcliffe, could you stop being drop-dead handsome and selling efficiently the play? You’re dangerously and continuously fuelling my interest for the play itself. What started as just a desire to see you act someday is now becoming a constant restrained impulsion to cross the ocean to see The Cripple of Inishmaan. Since the play is Irish, I expect you and the whole troupe to give unique and special performances in Ireland any time soon. Yours faithfully. »

(Source)

Basically don't be rude, why don't even need to write this out

Ok, post on consent and disability, and then I have to take out the dog.
Abled people do not seem to comprehend that there is a power dynamic involved in how they interact with disabled people, even if they don’t know the person they’re talking to is disabled. This is amplified when Abled people try to “help” disabled people WITHOUT PERMISSION.
I am the only person at my job who uses a mobility aid, but I don’t think I’m the only disabled person. Yesterday we went on a work retreat to a place that was not accessible. I do not like people touching me in general (Cept for like. 3 people) and really don’t like people moving me or touching my aids. Things that happened:
-putting my wheelchair in the car, and the chair being taken out of my hands and carried for me without people asking
-someone trying to pop the back of my chair up over a curb without them telling me/asking me
-“soooooo….you never told me what’s wrong with you”
-a weird venue change thing, we were supposed to go to a different place but there were a lot of stairs so I said, it was ok to still go, I’m just very slow on stairs, but they decided to not listen to me, and it’s hard to explain but why even ask me if you’re not gonna listen
-movement and walking based games that singled me out a bunch
-pushing me without my permission and getting my front wheel stuck and the carpet and throwing out my back, which could have easily been avoided if THEY DIDNT MOVE ME WITHOUT ME KNOWING and I am hurting a lot today, you jerks
-a huge talk at lunch about my celiacs and then someone said my food wasn’t gluten free but it was but I got really scared and anxious because they don’t understand how very real this is for me so I went to the bathroom and cried a little

And this was all within like 7 hours.

Basically what I’m trying to say is that even if those people were well meaning, the impact was I was made to feel like I couldn’t do shit for myself, unheard, singled out, and infantilized. I’m a professional! I specialize in harm reduction approaches to working with dually diagnosed LGBTQ youth! And even if I wasn’t, I deserve to feel like a normal member of the staff, not a child who can’t take care of them self. I felt those power dynamics in an extreme way. So like. Think about what you’re doing? Ask people for fucking permission before you touch them?? Have some human fucking decency???

Ableds, this is why cripples don't want your help.
  • I was getting into my car at Target. An employee was taking in a few carts from the corral, which was on the driver's side of my car. I wheeled up to the driver's seat to start the car, so my daughter could have the windows rolled down while I loaded my chair in the back.
  • Employee:*gestures to the cart corral* Do you want me to move this for you?
  • Me:No, I'm okay, thanks!
  • Employee:You sure? It's no problem.
  • Me:*already started car* Nah, I'm fine, thanks.
  • Employee:You sure? I can just move it.
  • Me:*already out from beside the corral* No, it's fine. *I open my hatchback, transfer from my wheelchair seat to the car opening, start disassembling my chair*
  • Employee:Do you need some help?
  • Me:No, I've got it.
  • Employee:It's no problem.
  • Me:No, really. I'm used it it, it's fine.
  • Employee:*stands there and stares silently at me*
  • Me:*becomes so uncomfortable I turn around and start having a conversation with my daughter until he starts to move, then I turn back to my chair*
  • Employee:You know I was just offering because I was here.
  • Me:Yeah. It's fine, I do this all the time.
  • Employee:I was just offering because I was here. It's not like I think you NEED help.
  • Me:Yeah, it's fine, I know.
  • Employee:I wasn't saying you need help, it's just that I'm here.
  • Me:*blink* *blink* Okay.
  • Employee:I mean, I was here, so why not?
  • Me:*stares blankly at him until he goes away*
  • This is really fucking annoying, and let me explain why:First, if you actually respected that cripples DON'T need our hands held through everything, you would accept our rejection and let us do things on our own. But no. You keep pushing. Well let me make this clear: Not only is this infantalizing as fuck, but it's also a complete invasion of privacy. (And it's all extra-double-awful when it's a random MAN doing this, because my PTSD does not allow me to deal that easily with being approached by strange men AT ALL, let alone when they are pushy and keep insisting on getting near me, my chair, my car, or my child. Men, stop assuming that women need or want your help, and understand that many of us have legitimate reason to want you far, far away from us.) Our wheelchairs are extensions of our bodies; my wheelchair is my legs. I don't fucking want strangers touching my legs. I don't want strangers shoving my legs into my car. I don't want strangers dropping my legs or getting my legs stuck on the backseat because hey, they're not fucking familiar with them. Is that clear enough? No? Then how about YOU JUST FUCKING LISTEN WHEN WE TELL YOU TO LEAVE US ALONE AND STOP STARING AT US LIKE "OH GOD A CRIPPLE I DIDN'T KNOW THEY LET THEM OUTSIDE ALONE." FFS, people.