Posted by: shesabibliophile | 05/03/2010

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


Responses

  1. Word.

  2. Thanks for this post.

    –someone with an invisible disability who has learned from you today

  3. Totally get what you’re saying. Totally.
    But I quite often end up on the other side of the argument in another context. As a straight-looking lesbian I have never, EVER been beaten up, threatened or seriously verbally abused because of my sexual orientation. Never. And I know many gay men who go through that every single DAY. I pass, *whether I want to or not* and as such, stay under the radar of most oppressors. I’m under no illusions as to how lucky I am.
    So it’s very easy to think that I’m not oppressed, but having your identity ignored, dismissed, discounted every goddamn day? Well, it’s wearing. Being told I’m not a real lesbian from within the queer community, and that there’s still ‘hope’ for me to ‘change’ because I’m ‘not too bad’ by well meaning homophobes who are actually nicer to me than the queers? It gets to me.
    I can only imagine that there is a similar debate in the disability community. If I had to choose, WOULD I choose to be unable to pass as straight to the untrained eye? And deal with all the daily crap that would entail? D’you know what? I don’t know the answer to that one.
    Passing is a huge luxury. A privelige. But it’s a poisoned chalice, eating away at your identity from the inside.
    Which of course does not excuse one sector of a community monopolising a debate. That gets on my tits, too.
    x
    WG

  4. I have never commented on a disability blog before. I have just read them, and thought deeply about what I have read.

    But I had to tell you that as someone struggling to cope with severe lower back pain that means I can’t stand for very long, severe chronic fatigue, neck and shoulder pain, hand and wrist pain, sleep apnoea, and arthritis I found your post very deeply offensive.

    All of my disabilities are “invisible”.

    What that means in reality is that I have to fight 100 times as hard to get the accomodations that I need.

    It means AB people bumping (hard) into my badly injured back and aggravating my injury because “Whoops, they didn’t know and didn’t look where they were going.”

    It means people not believing that I am in pain, that I am exhausted, that no, I can’t just do [X activity].

    It means workplaces not letting me take personal leave that I am entitled to to go to the physiotherapist or the CAT scan or the GP appointment that I need because “I look okay”.

    It means well meaning friends dragging me around in ways that set off my pain flares for four days straight because I don’t look that sick.

    It means people assuming that when I am in a scooter, it is because I am lazy, and not because I NEED one that day.

    You need to educate yourself about what it means to have an invisible disibility.

    I treat people with visible disibilities with respect and accomodation – how about you do the same for people with invisible disabilities?

    • A lot of the debate between people with visible vs. invisible disabilities is about the impairment itself. NO DOUBT you deal with a lot of pain and fatigue (me too), but this is not about comparing who has it worse in terms of the impairment. This is about passing, and the privilege of that. What a lot of people with invisibilities don’t seem to understand is – access/accommodations doesn’t come easy for us either. We are not automatically given free passes because we are visible. I used to work, and I would still get written up for being late because of my wheelchair-accessible bus not being on time. Stuff like that happened to me all the time. Being visibly disabled is not easier. Also, I don’t consider people who use scooters to have an invisible disability.

      I don’t see how my post is disrespectful or unaccommodating. It’s my reality.

  5. I really enjoyed your post, thank you for sharing your perspective. When people take the time to share their thoughts and experiences I think everyone can gain new understanding.

  6. I haven’t tuned into this blog in a while, and decided to drop in.

    As someone who has a progressive disability, that has peaks and lows in it’s severity, all I have to say is…

    Fuck you.

    I have been on both sides of the fence. The parts of my disability that are now visible I wear as a badge of honor to represent the pain, neglect, and mistreatment I have gone through because my disability was almost 100% invisible at one point. You make gross assumptions about people’s lives you know nothing about.

    I too have gone through mutilation, forced medication, and other treatments that did me permanent damage. I have had damaging comments put in my medical records that have resulted in me being denied treatment because a neurological problem went undiagnosed for years while I had no access to the tests that would get me proper treatment. Then I hit the magic age where things go from a 3 to a 15 on a scale of 10. My disability had to BECOME visible for me to get treatment.

    I’m sorry, but there is NO huge privilege in “passing” as you imagine, nor is there any huge privilege in being visibly disabled. The only people with the privileges are the people without disabilities because they can get up in the morning without the fifty million extra challenges that we have to deal with.

    • Passing carries a privilege, socially. As in, when you go out and can do your business without people even knowing you’re disabled. If you can’t do that (not necessarily all the time), then you’re not privileged in that sense. Privilege isn’t a bad thing or a good thing, it’s just a thing.

      I’m not referring to the impairments in my post. I’m not saying people with invisible disabilities have it easier in life. I’m talking about the way people with visible disabilities are viewed, by strangers, by the store clerk, by people you only see from time to time. Basically, by society as a whole, that initial glance where people judge you right away. To be able to move about socially without people knowing you’re disabled is a privilege. That was all I meant. And by the way, people with disabilities can certainly be privileged in other ways (class, race, etc) that impact their disability and the care they receive.

      I haven’t been reading many disability blogs lately (and obviously haven’t been writing many), but when this post was created, it seemed the only things being written about were how “lucky” people with visible disabilities were because they (we) didn’t have to prove anything – which, if anyone who has applied for insurance or medicaid knows, is very far from the truth. It seemed the voices of visibly disabled people were being shut out of that dialogue and out of blogs aimed at PWDs, which was really messed up and frustrating to me. It was a knee-jerk reaction post, and I could have gone into more depth to explain what I meant.

  7. I completely respect people who have visible disabilities. For instance, my father in law is blind. The way he deals with his disability and the independence that he maintains is amazing. I can’t imagine going shopping alone being in a wheelchair. Not being able to reach things, not being able to carry the things you want to purchase easily. It would be extremely difficult. At the same time, being agoraphobic along with other disabilities makes getting to the store difficult. Just getting to the mailbox is a challenge because it requires passing through the door. People with visible and invisible disabilities both have their challenges.

    • Well, yes they do. And I wasn’t denying that. But what I was referring to in my post was the social aspect of disability, and how it is a privilege (socially!) to be able to pass.

      • First, since I use a service dog for my invisible disability I have to disagree with you. I get the strangest looks and comments because people can’t see what is wrong with me.

        Second, I have to disagree and agree a little with you about the ability to pass socially. Yes, people who can fake it don’t get the looks and stares that people with obvious disabilities do. The part that I disagree with is that the entire time that these people are out in public they are faking it…pushing themselves as hard as they can to be able to make it through, and if they don’t manage it, no one will know how to help them since they can’t see anything wrong.

        Plus, you feel like your entire life is a fraud. You have to pretend to be something you are not. You work so hard to appear normal that you are always exhausted just from the attempt. Even with my service dog and my husband along, a trip to the doctor and if I’m feeling well enough, the pharmacy to pick up my prescriptions leaves me laying on the couch or in bed for at least the rest of the day and sometimes a day or so after.

        I can see how having an obvious disability might be more difficult in some ways. I can honestly say that the looks, comments, and questions I’ve gotten since I started using my service dog is worth having the tools that I need when I must leave the house.

  8. People with invisible disabilities struggle just like people with visible disabilities when it comes to working the system. NO ONE has it easy (contrary to some beliefs that ppl with visible disabilities get a free pass), and no impairment is easy. I made no claims that anyone with invisible disabilities has an easy time with things. Nor did I say they were “faking it” in public.

    But being able to pass in public, it’s a privilege. I don’t consider someone with a service dog to have an invisible disability. But what I was so mad about in my blog post was the narrative in the disability community sort of being taken over by people with invisible disabilities – which made this person with a visible disability very uncomfortable in a community which I should certainly belong.

  9. I was only saying that I fake it when I’m out in public. Trying so hard to appear normal and not run back to my car, lock the doors, and drive home as soon as the anxiety attack is over. I wasn’t attacking you at all. I fake it. I force myself every second not to run. I force myself to leave home convincing myself for the seconds it take to get to the car that no one will ever hurt me again. I even fake it when I’m talking to my counselor. Forcing myself not to run or second best sit on the floor as far away from her as possible or if I’m that logical, move a chair…

    I hope you have better luck finding the right support and I totally understand having a blog rant. I had one a short while back about the parents of children either teaching their children to leave service dogs alone or to…well…parent their children so I don’t have to. I don’t regret it, but had I calmed myself a little first, I might have been more PC in my post. I still feel the same way, but I would have said it more nicely… probably.


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