disability-problems

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This is basically a post for people who think that the world is accessible for those who are disabled, although this is centred around those who use a wheelchair. 

And this doesn’t include when people park in disabled spaces without a badge, or question those who park in disabled spaces who don’t use a chair.

The first picture is of a disabled parking space, where the snow has been pushed into that space whilst people were clearing the car park. This also happens when snow ploughers push the snow to the side of the road and onto the pavement as it blocks the dipped down pavement where wheelchair users can get on/off of the pavement and most wheelchairs struggle to be able to push through the snow.

The second picture is of a lift/elevator in Boots a store in the UK, where there are baskets and cases in front of the lift, which block wheelchair users from using it and accessing other levels in the store.

The third picture is of a zebra crossing with a lowered pavement for wheelchair users, and there is an island in the middle with a normal height curb, which blocks wheelchair users, and it means they have to go around, along with having bollards near the entrance which don’t look wide enough to fit a wheelchair through.

The fourth picture is that of a ramp, which has a step in order to get onto the ramp. (I’m pretty sure they didn’t even try.)

The fifth picture is of a ramp with a tree in the middle, which doesn’t have enough room on either side for a wheelchair to get through.

The sixth picture is of a very very steep ramp, which even if you have someone pushing your chair you probably won’t be able to get up it!

The seventh picture is of a disabled parking space, which has a ramp leading to the entrance, which again has steps in order to access the ramp.

The eighth picture is of ‘disabled parking’, where non of the spaces have room to allow chairs to get out of the car, except at the back. They are just normal spaces where a blue sign has been placed in an attempt to make the parking 'wheelchair accessible’.

The ninth picture is of a reception desk which is too high for wheelchair users to access, as they can’t be seen, due to the fact that they are smaller than the desk.

The final picture is of a ramp which only goes halfway up the curb, essentially meaning there is a step at the top of the ramp.

If anybody still thinks the world isn’t staked against those who are disabled, then I honestly worry about you.

THAT THING WHEN KIDS POINT AT YOU YELLING QUESTIONS WHEN YOU ARE VISIBLY DISABLED

It kinda sucks. It really sucks. I like kids and I work with kids and I’m totally used to it and it still sucks. It hurts my feelings.

I didn’t become disabled and get an instant magical free training in how to teach kids about disability and diversity. I also didn’t sign up for a delicate unpaid education-and-outreach job every time I go to the frickin’ grocery store. (I actually don’t have time for that).

BUT. And this is a big butt.

I am actually learning to love it, this stupid important unpaid job that I didn’t even get to choose.

I know I know, I have an unfair advantage because I already thought kids were ridiculous and hilarious to begin with. And I worked with them before I started using a wheelchair. But working with kids and having to have the disability conversation in so many iterations so many times over is teaching me a whole lot about this whole situation! And it got much less stressful after I realized this helpful key secret:

kids don’t actually have a problem with disability.

Especially compared to the adults you encounter who will or won’t ask about it and will or won’t hire you or date you or what-have-you, so many kids have absolutely no problem with disability. Unless the media // the adults around them have gotten to their brains before you, this whole conversation might be alarmingly simple, quick, and painless:

SCENARIO 1:

“hey why are you on that?” [“on that” refers to my wheelchair]. 

(whenever possible I put down what I’m doing in order to smile and make eye contact for this. It will probably be less than 20 seconds).

“oh my wheelchair? Great question! I have a disability that makes my bones crack easily, so it’s safer and faster for me to use a wheelchair sometimes. It’s just how I help my body be at its best!”

“oh!”

“cool right?”

“yeah!”

“did you have any other questions?” [I only throw that in on good days]

“um. nope!”


[kid goes to play]

[exhale]


My advice is to expect Scenario One. All you gotta do to prepare is have a one-sentence explanation of your assistive device / disability that you feel comfortable with. Kids do not give a shit about your diagnosis, and you don’t need to prove anything to them. All they need from you is a simple, casual answer.

I * always * explicitly use the word disability for a few reasons. I used to just casually say “I fractured my leg” which was also true, but kids learn really early on to feel pity for someone who has an injury, so they would say things like “ohh I feel bad for you” or “oh when will you get better” which always made the conversation longer and more uncomfortable. Then I realized I had a lot of power in shaping their interaction with disability (and their response to it) in these brief encounters, and also I GET TO DECIDE HOW I ANSWER! So I revised my answer to frame my injuries (and my wheels), as a normal, casual part of my life. Feel free to use my exact wording if it helps you:

“oh my wheelchair? Great question! I have a disability that   (very basic explanation)     so it’s safer and faster for me to use a wheelchair sometimes. It’s just how I help my body be at its best!”

Okay I studied sociolinguistics in college so here’s my geeky little break-down:

  • oh my wheelchair?” ← gives a nice nonchalant “oh this old thing” vibe and sends the message that it’s okay and normal to talk about wheelchairs.
  • great question!” ← teaches the child that disability is not shameful
  • I have a disability that ___” ← addresses the taboo right away, deflating any tension, awkwardness, and curiosity in the rest of the conversation. Suddenly you have all the power here, since there’s no secret anymore.
  • so it’s safer and faster for me to use a wheelchair” ← emphasizes the positive attributes of assistive devices. You could also say “it helps me do everything I want to do” or “my wheels are faster than my feet” or whatever you want. Again, simplicity works for you in this.
  • It’s just how I help my body be at its best!” ← hopefully kids are already getting some messaging about taking care of their bodies: brushing their teeth, eating a snack, sleeping enough, etc. This line should be relatable to them and also caps the conversation in a helpful way: it’s almost like saying “this is just how it is” and creates a sense of gentle, positive closure.

My personal opinion on the matter of disclosure is that the vast majority of kids don’t care at all about the fancy name of your disability. I don’t emphasize simplicity because I think kids need to be talked down to, I emphasize simplicity because it keeps the conversation clear, casual, and quick. In the adult world, disclosure is practically demanded of disabled people: even if they don’t ask, everyone wants to know what, exactly, is “wrong” with you. So my choice in not naming my specific disability in these conversations with kids is conscious and political. Not disclosing my diagnosis keeps our conversation out of the medical sphere (disabled people are so over-medicalized anyway) and gives us a chance to connect human-to-human. Some people feel that sharing a diagnosis will raise “awareness” for their illness or disability but I’m not sure that awareness is what I need from kids. I don’t need them to be aware that my bod has wonky collagen production, I need them to know how to interact with me respectfully. I’m not adamantly against specific diagnosis disclosure, (again, YOU GET TO CHOOSE what you say in these situations!) but I also don’t think it’s necessary or important and I think more often than not, it derails the conversation. Especially if you already didn’t have time for this to begin with. Guaranteed, a diagnosis disclosure will add time to this convo.

Often kids will ask what happened to you, assuming that you’ve had some kind of accident. I have a congenital disability, so even when I * have * fractured and had an ‘accident’ and that is why I’m wheeling instead of walking, I usually just casually say: “oh, nothing happened! Same old me. I have a disability…” and continue my spiel from there. 

They will also ask what’s wrong with you (which is the hardest to stomach) and I do the same thing: “oh, nothing’s wrong! I just have a disability…” etc. If I’m just absolutely not in the mood or if a kid seems weirdly aggressive (which is almost never the case, but it does happen), I’ll cheerfully say “oh nothing’s wrong, but thank you so much for asking!” and that usually shuts down the conversation. 

Lovelies, I know how fucking painful this is. Ugh it sucks so much. But it does get easier and gentler and sometimes kids say really goofy things that you get to laugh about later. This conversation is yours. You get to do as you please with it. Have fun. If you want, for little ones throw in an afterthought: “plus it gives me magical powers. But don’t tell anyone.” Having someone look at you like you could be legitimately fucking magical might make your day. 

Hell, you ARE legitimately fucking magical. Go you for reading this and thinking about this and doing you. 

love,

haley

No one ever teaches you how to mourn your health. You just realize one day that it’s gone, and you are not the same as you were before. Most days, it’s all right, but then something happens: you can’t go to dinner with your family because you’re nauseous, you can’t go hiking because fatigue and pain. You can’t you can’t you can’t, and then it hits you: you are irreversibly changed.

13 Reasons Why "You Don't Look Sick/Disabled!" Is Not A Compliment
  1. I am ill and I am disabled, and this is what I look like.
  2. What do you THINK disabled or ill people look like?
  3. It makes it sound like you think disabled people “should” look a bit gross or a bit wierd.
  4. It makes it sound like I have to prove my illness to you.
  5. It creates a hierarchy of what one ableist acquaintence called, “Like, you know. Disabled-disabled and normal people disabled. Like, you’re disabled but you’re also normal. You’re disabled but you’re also not really disabled because you’re also like us.” That is not okay.
  6. It makes it sound like if I did “look disabled” then you’d either think less of me or you’d believe me more.
  7. For the same reasons you shouldn’t say to someone, “You don’t look Jewish!”
  8. For the same reasons you shouldn’t say to someone, “You don’t sound black!”
  9. It often sets the conversation up in a way where you are the judge and you can either validate or invalidate my disability and how much it affects me.
  10. Neither my illnesses nor my disabilities are totally invisible if you took the time to learn about them and decided to pay attention.
  11. It makes you sound untrustworthy. It makes me think you’re going to be the kind of person that will jump to conclusions about my health if I don’t look or act in certain stereotypical ways. Can I laugh and have a good time around you without you implying I’m cured or dismissing my conditions? (Because it really sucks when you do that.)
  12. It feels really dismissive and discouraging.
  13. It is dehumanizing. 15% of the world’s population is disabled. We come in more shapes and sizes than able-bodied people do. Whatever a disabled or ill person looks like, that is what disabled and ill people look like regardless of your preconceptions.
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Hey guys, that’s me on my mobility scooter. For a year it’s helped me get to work, doctor’s appointments, to see my family & friends, to live. Without it, I’m not getting very far. I’m in too much pain to walk or stand for long periods of time. And yesterday it stopped working. 

I’m permanently disabled, so this is really scary for me. It turned out to be the battery that had gone bad. I reached out to the scooter company and the good news is that they will repair it free of charge! The bad news is that due to the nature of the battery, it cannot be overnight delivered, only shipped via ground. Both ways. Which will take a long time. I can’t afford to miss that much work, plus I have vital medical treatments to get to. I need a functional battery asap.

Fortunately they do make a different type of battery that can be sent via priority mail, and that’s what I need to get. Total including taxes & shipping is $300.
If you’d like to help, I have some cosplay items for sale on my fb page. If you want to donate via paypal, there’s a button on the top corner of my blog.
Thank you all so much, this hit me out of nowhere & I appreciate any help or reblogs to get through this.

ETA: Thanks to everyone who helped me by reblogging, donating or buying cosplay items, I’m able to order a new battery for my mobility scooter! Those of you who bought items will be getting them as soon as I’m able to get moving again. Thank you for your patience. I appreciate all of your help & kind words. I’m in a lot of pain, as I always am, but at least I know that I’ll be able to get going again soon. Thanks again!
Jay <3

Dear able-bodied people,

Just because I am functioning, does not mean I am well. I can force myself to function when I have no other choice. It does not mean that I am having a good day, that my condition is not as bad as it seems, or that my condition is cured/well controlled. It simply means that I am operating outside of my limits out of necessity.

Just because I am functioning, does not mean I am well.

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Designer Creates A Font That Emulates The Frustrations Of Dyslexia

Unlike most fonts, which prioritize easy and swift readability, graphic designer Daniel Britton’s recent creation does just the opposite. Meant to raise awareness for dyslexia, the font strips letters of their qualities that make them easily recognizable. An “A” is transformed to resemble an upside-down “V”; a “D” is turned into a backwards “C.” The result is a jumble of shapes that takes extra time and concentration to interpret.

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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.

The cruelest part of this chronic illness is that it let me start with a normal life. Then it took it all away.

Spoonie Problems: When you don’t feel good, but you can’t tell exactly what the problem is. You just don’t feel right. And then you tell someone and they ask, “What’s the problem?” and you’re like, “I just don’t feel good.” Because you don’t know what the problem is, you just don’t feel good. Ugh, I don’t feel good, you guys.

Made by www.organize-ability.tumblr.com

[Batteries in various stages of power against yellow background. Title text: “Effects of Social Events on Spoonies.” Battery 1 is ¾ full with caption: “Getting ready.” Battery 2 is ½ full with caption: “Travel to event.” Battery 3 is ¼ full with caption: “1-3 hours at event.” Battery 4 is empty with caption: “Travel home.”]