I have a love/hate relationship with disability awareness blogs. On one hand I’ve gotten so much information from them and they’ve helped me realize that I’m not some isolated case where people treat me like shit but pretend they’re being amazing for even deigning to notice my existence. On the other hand I see how much worse people can be when they can hide as anonymous, I see the statistics for abuse, I see the death threats and the assumptions that disabled people are all lazy and worthless. So it’s constantly pushing me to inform myself and try to inform other people, but it’s also making me lose my faith in humanity that much faster.

Honestly, I am in awe of the people who run these blogs. I have a hard enough time dealing with the way people are in public, I don’t think I could handle the way people are when they don’t fear repercussions.

cpmatters:

Inspiration Porn

[photo: black and white image of a bearded, white, tattoo’d, bespectacled person wearing a black tshirt, overalls and cap, sitting in a motorized mobility scooter, clasping their hands together while smiling big, with their forearm crutches sticking up behind them; text reads: “Know what i’m tired of? Images of disabled people doing random things, turned into “inspiration porn”. These images (e.g. children joyfully running with their prosthetic legs, someone painting with their toes, an elder skiing, etc), are then emblazoned with text like “what’s your excuse?”, “your excuse is invalid”, “if ___ can do it, why can’t you?” and other gems. They call on non-disabled people to buck up and stop making excuses for not doing something, and guilt other disabled folks into feeling like crap for not being able to pull themselves up by the proverbial bootstraps & “just do it”. These images & sentiments are an ableist tool. They exceptionalize disabled people based in ablesist notions of accomplishment & worth. They build on & reenforce able bodied pitydom of gimps. Just fucking stop it ok? We’re just doing our thing, yknow? We are not a goddamn guilt-trip tool to get you to do stuff. Please, if you need to use gimps as a tool to get you to do stuff, yer using the wrong starting point. (*for example, in this photo, i am simply enjoying a moment with a friend… I AM NOT YOUR INSPIRATION!)”]

Thank you, dendrophile, for the source: Building Radical Accessible Communities Everywhere!

Click on the image to view its larger size.

My grandma wants to send me to a healing miracle shrine thing in France.

…

I think if shrines ever work miracles it’s psychosomatic because of the visitor’s intense belief. I do not have that intense belief. I’m not Christian. And what exactly does she think will happen? I’ll go and the nodules in my lungs will suddenly disappear and my leg will grow back and my life will suddenly be perfect? I think if there’s a God and He wanted to heal me, traveling across the fucking world wouldn’t be a requirement.

Traveling when you’re disabled sucks. I haven’t been on a plane since the amputation, but I was on a flight right before it when I was walking with a cane (because my pelvis was so weak from the tumor that it fractured just from walking) and even just that sucked. I had to put it through to be scanned while I went through the metal detector (thanks, security, for making me walk on a healing fracture, that felt wonderful). It got caught in the scanner, and when I asked the guy supervising that area to fish it out for me he said “Well, do you really need it?” Um. Yes? No, I’m just walking around with a cane and a severe limp because it’s the funnest thing ever. Oh, sure, I won’t mind leaving some of my possessions behind because you’re too lazy to do your fucking job. What the fuck? Yes, yes I do need my FUCKING CANE.

I’ve heard a ton of horror stories about trying to travel when you’re disabled. I don’t want to struggle to get my crutches through or my wheelchair. I don’t want to risk them getting damaged or lost. I kind of need them.

Club Anything was amazing and I’ll definitely be going again, but the way I was treated there caused me to raise my expectations of people a bit, and now I’ve spent the past couple of days realizing that, oh, no, people are still horrible everywhere else, no, I can’t go out anywhere else and expect people to treat me with any sort of courtesy, no, I can’t assume that if someone’s being exceptionally nice to me they might actually like me, they’re just doing it to impress my friend.

Thanks, world. This is the best feeling ever.

…Also, I swear to god, if my roommate complains to me one more time about how horny she is and how frustrating that is I’m going to snap. It’s been, what, a fucking MONTH since she’s had sex? And she’s complaining to a fucking 22 year old virgin. REALLY? Wow, I have no idea how THAT feels.

I went to my first fetish night event thing last night at my roommate/friend’s favorite club (Club Anything in Milwaukee). They have demonstrations through the night, and last night’s was suspension bondage, and there was some whipping and spanking.

I’ve been interested in BDSM for a while, but it was all based on stories and videos I’d seen online, so it was really awesome to finally see some of it in person.

I was really happy all night, and totally comfortable. It took me a while to figure out that it was because people weren’t staring at me because I’m an amputee. They were actually looking at me like I was not just a person, but an attractive person. It sounds melodramatic, but I seriously haven’t felt attractive in any way since the amputation. It wasn’t really because I felt that I couldn’t be attractive without my right leg, or the scars. It was the colostomy, the catheter, the way my skin was stretched and the fat was not evenly redistributed. It was spending two years with people, even people with the best intentions, looking at me like an oddity instead of as a person. They saw the disability or the cancer, they didn’t see ME. As soon as I stepped into this club I felt like my body wasn’t this brokenthingI happen to be attached to, but something that was beautiful. I felt pretty for the first time in two years.

I actuallystopped thinking. That’s been the biggest thing for me through all of this, that I was never able to forget about my problems for a while. No matter where I went or what I did, I had to plan it out to make sure Icoulddo it. I had to decide if my body was up for the crutches or if I had to use the wheelchair, whether I could use either and still get into a building, if my crutches would possibly get wet because then they slip on wood or linoleum floors, if I had backup supplies for my colostomy or catheter, what the seating would be like because hard seats hurt to sit on with half a pelvis… it goes on. I worried about all that on the way there, but as soon as I stepped into the building it finally stopped.

That would have been enough to make me want to go every day for the rest of my life, but then add the amazing people who were so easy to talk to, the great music… UGH. I could cry. Seriously. I still might. I’m still just so freaking happy about all of it.

I’m answering these both at once, because I’m pretty sure you’re the same person. I should clarify about the I Hate Everything post. I don’t mind people asking questions on here, because honestly I’m generally pretty open to talking about what happened to me. The issue is that it’s very different to have a complete stranger come up to you out of nowherein personwhen you’re doing something very unrelated (like grocery shopping or trying to have fun with your friends) and ask you about it. Let’s be honest, there aren’t exactly guidelines to follow in situations like this because it varies according to each person’s preferences. So, for me, I don’t mind talking about it here because my tumblr is about me and my life. I don’t like complete strangers coming up to me in person because then I’m not in a situation where I’m broadcasting about my life, I’m just trying to live my life. The confusion is totally understandable.

With all that said, here’s what happened to me: I have bone cancer. I was diagnosed in May 2009 with osteosarcoma. When I was diagnosed I already had a tumor the size of a football growing in my pelvis and some nodules in my lungs. I was on a lot of chemo for about a year in the hope that it would shrink the tumor a little and take of the nodules. The nodules were gone, but the tumor really didn’t shrink at all. The tumor had eaten through a lot of my pelvis, so when they removed it they had to amputate the right half of my pelvis. So technically there was nothing wrong with my right leg, but your right leg’s pretty useless without the pelvis and it would be really painful. So my entire right leg is gone, though they made me a bit of a stump so if I ever got a prosthetic there’d be something to attach it to. The prosthetic is never going to happen (there’s no muscle to move it with), but it does help keep up my underwear and pants.

The nodules keep coming back in my lungs, though, and after about three years I’m at my limit. I’m most likely stopping treatment after this summer, unless my mindset drastically changes during that time. I’ve had fourteen surgeries, more chemo then I want to think about, and there’s really no end in sight. So that’s the short version of the story.

I reallydon’t mind talking about it on here, it’s just in person when I’m minding my own business that it’s a problem for me. So if anyone has questions or anything, feel free to ask and I’ll try my best to answer.

I am not changing out of my pajama pants today. Good thing I’m not going anywhere.

Our lease is up in May. We don’t have a new place lined up yet. Because it’s stupidly hard to find a place to rent that is even remotely handicap accessible, allows a cat, and is cheap as fuck so my sister can afford it by herself when I die. Right. I love worrying about how my sister is going to get by when I die with her lifetime’s worth of student loans to also pay off. I love planning my own death. It’s been nothing but laughs.

BLARGHAIDSPGUDSAPGU.

I was supposed to start a new chemo Thursday. It was in a study. Apparently they’ve decided to no longer include osteosarcoma patients in the study, which I was finally told about Wednesday evening after signing all the papers and bracing myself mentally. GREAT. I WOULD LOVE TO WORRY ABOUT THIS SOME MORE. PLEASE, PILE ON THE STRESS. I LOVE BEING SO DEPRESSED I CAN LITERALLY STARE AT A BLANK WALL FOR HOURS WITHOUT HAVING A SINGLE THOUGHT OR ANY IDEA OF THE PASSAGE OF TIME. THAT WOULD BE GREAT.

…So I’m going to go to bed, enjoy the fact that at least I’m not in the hospital right now getting chemo, cuddle my cat, and stare at the wall until I fall asleep. I will not want to wake up tomorrow. I will want to stay in bed all day so I can keep staring at the wall, because if I’m going to be honest, I enjoy the part of depression where I can stop thinking. I have an anxiety disorder. To be able to stop thinking, especially about chemo and surgeries and being disabled and living with cancer and dying from cancer, is such a precious gift that I find it hard to mind it too much.

spacedino:

brightorangerain:

The wheel perspective

Stella Young Ramp Up 27 Mar 2012

It doesn’t matter how we got like this. Really. Are you asking because you want to know or because you need to? If you’re just sitting next to one of us on the train, or taking our order at a cafe, you don’t actually need to know. If we’ve actually met and had a conversation beyond “Do you want honey with your chai?” then perhaps it gets a little more relevant. It might come up in conversation, and when it does, we’ll be happy to tell you. It’s just not a very good opening line.

We heart our chairs. I’ve had five wheelchairs in my lifetime and I’ve loved each one as much as the last. I’ve had my current chair for almost 17 years. Based on the recommendation that they should be replaced every seven or so years, this old girl is about 162 wheelchair-years old. She’s well worn and well loved. One day soon she’ll need replacing, and I’ll come to love that one too, I’m sure. My chair is the last thing I touch before I climb into bed at night, and the first when I climb out. And, let’s face it. without our chairs, there’d be no getting out of bed at all for a lot of us. We are not, as we so often see written, “wheelchair bound”. We are liberated by our chairs. They give us the freedom to be who we are, and we love them for it.

We don’t mind if you ask us to go for a walk. Seriously, there’s no need to avoid saying things like “I must be running along,” or “Let’s go for a walk.” Those kinds of phrases are a part of everyday language, and because we live in the real world too, we’re really not that sensitive. I have a blind friend who once told me that the most annoying thing that ever happens to her is people apologising for asking her if she sees their point. Touche.

We have heard that joke before. You know, the one you were just thinking of. The one about drink driving, or whether or not we have a licence. Even the one about putting a V8 engine on the chair. Heard it. We’ve heard them all, so forgive us if your brilliant one-liner only elicits a polite smile. Sorry about that.

We are not on the tram so that you can hang your shopping bags on us. Our chairs are a part of us and a part of our personal space. Leaning on someone’s wheelchair is a bit like leaning on someone’s shoulder. You wouldn’t do it to a stranger, or someone you’d only just met. And I’m willing to bet you wouldn’t hang your full-to-the-brim enviro-bags on someone’s conveniently outstretched arm. Your shopping may be heavy, but our chairs are not shelves.

Just because we are hanging out with a non-disabled person doesn’t mean they are a carer. Disabled people have friends, partners, kids, parents, siblings and families just like everyone else. Quite often these people are hanging out with us because they like to, not because we need looking after, or because they are kind, generous souls. It’s annoying when people assume the only reason someone is hanging out with you is because they have to. Many of us do have personal assistants to help out with some stuff we can’t do, but most of the time the people hanging out with us are just our mates.

We’re into all the same stuff you are. OK, maybe not exactly the same stuff (I’m really not into snowboarding, if I’m honest), but you know what I mean. We don’t all think about disability all the time. I like knitting and crafty things, as well as disability theory and politics, feminist things, comedy things and fashion things, too. I’m really lucky to have a job where I get to be quite nerdy about disability culture and politics as editor of Ramp Up. We can talk about everything from sport to politics, television to weird things non-disabled people say to us. (Not you, obviously, you’re lovely.) Having contact with so many different disabled folks in Australia reminds me how different we all are, even though we have some experiences in common.

Your kids are going to stare. And that’s perfectly OK. When you look different to everyone else they’ve ever seen, kids will naturally stare. There’s no need to be embarrassed about it or consider it bad behaviour. Kids are interested in anything that’s different to the norm. And the thing is, if you tell them not to stare, or discourage them from asking questions because you think it might upset us, you’re teaching them that looking different is something to be ashamed of. It’s not. We’d much rather have an honest conversation with your kids than have them shuffled away from us like we might bite them. Besides, eventually they’ll say something really cute and funny, like “Are you imaginary?” or “Why are you wearing shoes?”

Feel free to offer us a hand, but don’t get too upset if we say no. If you see someone who looks like they’re struggling to do something, it’s very tempting to jump in and do it for them. But you really shouldn’t. It’s absolutely fine to offer your assistance, but don’t be surprised if it isn’t required. Sometimes we look pretty clumsy doing everyday stuff, like shopping or knitting on the tram, because we might do it differently to the way you do it. But we’ve had years of practice at being us and we’re generally in control of what we’re doing. Make the offer by all means, but don’t be upset if we say “thanks, but no thanks.”

We don’t all know each other. No, I don’t know Jenny, the girl on your street who uses a wheelchair too.

We are not brave. Among the aforementioned weird things some non-disabled folk like to say to us are things like “Oh you’re so brave/courageous/inspirational!” We’re not, really. We’re just living our lives like everyone else. Just as you’ve worked out the easiest and most effective way to get along in life, so have we. There’s no need to praise us for just going about our everyday business. Going to the shops to buy milk doesn’t take any more courage for me than it does for you.

If you can use the regular loos, and they’re free, don’t use the disabled ones. OK, we get that not all disabilities are visible and there are all sorts of reasons someone might need a bit of extra space. A friend of mine is diabetic, and she prefers to use the disabled toilets so she has a bit more room to inject her insulin. That’s fair enough. But when we wait outside for 20 minutes and you stroll out with a newspaper and a completed sudoku under your arm, you probably weren’t checking your blood-sugar levels. If the other toilets are occupied, and you’re going to be quick, go ahead. Just remember that needing to poo is not an access requirement. Thanks.

.

I love so much about all of these points, especially the last one.

Going to throw in here, too, that I don’t give a shit if you’re “going to be quick”; don’t fucking park in the disabled parking spaces if you aren’t disabled. Jackasses. 

Thank you. The one about being brave/inspiring really hits home for me. I’m just living.