The Post Where I Piss a Bunch of People Off

Dear People With Invisible Disabilities on Certain Blogs,

I’m tired of your narrative taking over in disability activist spaces or disability dialogue in general. You have a huge privilege in passing. Please be more understanding of when it is cool for you to speak up, and when you just need to sit back and listen.

When you can go around doing your business, hiding your disability from others, choosing when it is safe to come out or not, that is a huge advantage that many of us will never be able to take part in. And I don’t feel comfortable with people with invisible disabilities talking for me or with me about how hard it is when society judges you.  Not when people like me are being put in institutions, being mutilated, being killed, or any other number of atrocious things. I DON’T WANT TO TALK ABOUT INVISIBLE DISABILITY ANYMORE.

Truly frustrated,

ME

Comfort, Safety, and Internalized [dis]Ableism

A while back, I joined a website for people with disabilities called Disaboom. There was a chat room, message boards, and articles written by PWD, doctors, and carers. While I did make a couple of friends there, it was mostly filled with internet drama and points-of-view that I couldn’t deal with.

In a space that was supposed to be comfortable and safe for PWD, it wasn’t. It certainly wasn’t one for me, being a disabled mixed-race woman.  There were posts by devotees looking for a little action, posts about  “illegal aliens” and any people of color who immigrate to the US, how women were inventing and perpetuating sexism, about Obama only winning because he is black, and more. Of course, there were people who did not think these things (my friends), but we all started to leave as the bigotry grew.  I eventually left.

Even though I would like to forget that whole experience, I did take away two things from it. One is that, besides being with good friends, my boyfriend, and some family, I will probably never feel totally comfortable in any space. This is something I knew before, subconsciously, but I didn’t start to analyze it or think about it until post-Disaboom. At zine fests, I’m usually the only (visibly) disabled person; I mean, at most social events, this is true. But even in spaces with other disabled folk, I am the woman, or the stealth Latina. Or the atheist. Whatever. There’s always something that sets me off from the crowd. I’m used to feeling like I’m on the fringe (and not in a cool, punk-rocky way), so I roll with it. It’s there, it will always be that way, so I deal. My activism is something that I hope will change this, but realistically, it’s beyond just me.

The second thing I took away from Disaboom is that there is a lot of internalized (dis)ableism going around. I know that, when I was younger, I was one of those “I’m not DISABLED like THEM!” people. I guess that’s because the only images of disabled people I’d ever seen were “inspirational” (which I never felt) or “sad” (which I also never felt). I used to go to the Muscular Dystrophy Association parties, and I would be uncomfortable with the attitude that permeated the room. It seemed like everyone there was so obsessed with their disability and being poster children and finding a cure to FIX them, and I wasn’t raised like that. I was raised in a home where my disability was rarely a topic of conversation, and all my friends were able-bodied. It was alien to me to think of myself as something that needed to be fixed. But this is what disability was to me because this is what I was exposed to.

It wasn’t until I reached adulthood that I started to view disability as something that wasn’t inherently bad. I learned more about disability rights and activism – the internet and books opened that world for me – and I began using “disabled” as a word to describe myself. I knew there were people out there who were fighting for rights and getting together to do protests, whether they were in the streets or online through blogs.

So, when I joined Disaboom, I was at that point in my life – accepting and appreciating who I am. But this website wasn’t like that. Even the people with disabilities talking about how they weren’t disabled (sound familiar?), but differently-abled, how they would never be able to accomplish anything in life and they needed to be fixed or cured. I wanted to tell them, and tried to tell them,  that, no, you don’t need to be fixed – society needs to be fixed! Your disability isn’t the problem, it’s society’s inability to include us in everyday life!

While I would definitely want parts of my disability to go away (stomach issues, ugh!), and while there are disabilities that many people want a cure for (and rightfully so), I don’t like to see “finding a cure” as the biggest topic in a disability community or message board. It just reeks of ableism – it’s always the disabled person who has to change, and not the community around them, right? And when your community (I’m speaking specifically about the Muscular Dystrophy Association) is ALL about finding a cure and pitying you, you just want that attitude to go away.

Disability Blog Carnival

We were recently mentioned on FWD/Feminists With Disabilities (thanks!), a great blog that I’ve been reading lately. On November 19th, FWD will be hosting the Disability Blog Carnival, which I will be participating in – the optional theme is intersectionality.  I’ve never done a blog carnival before, so I’m looking forward to it.  Also, if you have a blog, this is a great opportunity to really come together as a community and share our experiences.

Restaurant 101 – The Gimp Edition

A recent post at Feministe got me thinking about my own restaurant experiences, and how, as a person with a disability, I am treated by restaurant staff.

Let’s start from the beginning.

If we’re going to a place we have never been to, we must check if it is accessible.  EVERY time we forget to do this, or we assume that the place will be accessible, the restaurant ends up having two flights of stairs or narrow doors.  Sometimes, the staff will tell us they are accessible “but we have a few steps out front that we can help you with.”  Assholes don’t even know how much my chair weighs.  Plus, HELLO, dangerous! Lawsuits!

If I can get into a restaurant, I will either not receive a menu (because I am just at the restaurant to look at the decor, evidently), or the waiter asks if we all want menus.  Or they ask if I need a children’s menu.  I’m almost certain that able-bodied folk do not experience this phenomenon, and this menu game is only done for those who look gimpy.  I know, I know, I should ask for a menu if I don’t get one, right? But no, I just borrow my mom’s.  I don’t feel like dealing with it.  Bad activist moment.

Now, I am ready to order.  My mom recites my order for me (bad activist moment #2) because I’m not loud enough.  Sometimes I order myself.  I dunno, it’s also kind of a social anxiety thing.  I have trouble doing simple things like answering the phone or asking someone in a store to help me – so ordering food is freaky for me; I inherited this from my dad.  Either way, the waiter hardy ever addresses me personally.  This is the plight of many a gimp – the old “talk to the aide/parent/nurse, not the actual person” trick.

When my food arrives, my drink is sometimes in a child sippy cup.  No joke.  This happens more at chain restaurants like TGI Friday’s or Ruby Tuesdays.  I don’t order from the children’s menu.  I know I look young, but good god, I don’t look THAT young.  But I guess they think people with disabilities are all child-like and love brightly-colored cups with clowns on them and gigantic purple straws.  Who knows.

I can’t say this stuff happens at every restaurant, but it occurs at least 80% of the time.  I’ve learned to just deal with it – I shouldn’t HAVE to, but if I protested/corrected every restaurant or waiter that expressed ableism towards me, I would get burnt out.  So, when I encounter these moments, I just think in the back of my mind that I am doing other things to fight ableism – other things that are more creative and empowering to me.  Like this blog.