Being Disabled Sucks (An Obvious Truth I Apparently Need to Defend)
Yesterday I had one of my worst days health-wise in years. I’m having a lupus flareup, and then I got the ear infection from hell. So granted, I wasn’t in the best headspace (I’m still not, to be honest). But insult was added to injury when I read an article that went on about how it’s “ableist” for people to suggest that having a disability is a bad thing. FUCK THAT. I can’t stand that sort of PC bullshit, and let me tell you why.
First of all, let me do the prerequisite acknowledgment that ableism is real. I see it everywhere. I saw it at the mall the other day when all the handicapped stalls were out of order and when I brought that to someone’s attention, they acted like I was crazy since I, myself, wasn’t in a wheelchair. I see it when people act like I’m lazy because I don’t have a traditional job due to my health issues. I see it in myself when I have to physically leave the house when my friend is moving out because I know that I will put my health at risk trying to lift boxes so I don’t seem like a “douche” for not helping.
However, to suggest that it’s “ableist” for someone to say that a disability is a bad thing, that’s downright stupid. It’s not ableist. It’s true. As someone with a chronic illness, I have good days and bad. Good years and bad, actually. And so I know what it’s like to be able bodied and what it’s like to be disabled. Let me tell you, there is absolutely nothing about being disabled that I prefer. Can I find a silver lining in it? Has it given me a different perspective on the world? Sure. So was being bullied as a child, but that doesn’t mean I’d call that a good thing or that I’d recommend it for all children. Making the best of a shitty situation doesn’t mean that the situation isn’t shitty.
The proof’s in the pudding, right? Is there anyone who would choose to be disabled over being able bodied? Who despite their good health would purposely make themselves sick? There are a handful of such people, and you know what they’re called? Mentally ill.
Let me give you a side-by-side of my day when I’m feeling well vs. when I’m disabled by lupus and you tell me if one is better than the other.
I wake up feeling great. I look over at my husband holding the baby and she smiles at me. I smile back and my heart melts. My husband goes off to work, and while I’ll miss him, I look forward to the day with our daughter. Baby takes her morning nap and I get some writing in while eating a snack I had the energy to walk into the kitchen to grab. She wakes up. We cuddle a little bit. Then we go on a walk. We coo at each other while I listen to a podcast. I come home and prepare an intricate homemade meal because I love to cook. Around seven, my husband gets home. We sit down to eat and discuss politics and our day. We watch some TV or maybe even play a game and then head off to bed.
I’m up much of the night in pain. I can’t get to sleep not only because of the pain but also because of worry about how I’m going to take care of the baby the next day if I’m still feeling like this. (Thankfully my husband takes all night duties.) I wake up the next morning and if I’m lucky, I have the energy to prop myself up in bed. My husband surrounds the bed with everything I need for the baby in case I don’t have the energy to get up, and then he leaves for work. Baby smiles at me. I don’t have the energy to smile back. I try to hold back tears, but fail. She’s six months old now. How much longer can I cry in front of her?
There’s no energy for a walk. No energy for cooking. It’s a struggle just to feed her and change her diapers. I vacillate between looking at my daughter and thinking her smiles are the only good thing in my day and feeling like I’ve made a God awful mistake having her. I’m just not well enough to be a competent mom. I count down the minutes until my husband gets home. He finally does. He takes her from me, prepares a quick dinner that I’m not well enough to enjoy. I don’t have the energy to talk to him about politics or his day. I lie down hoping to get extra sleep, but my mind won’t shut down so I end up watching the seventh Cheers rerun in a row. I think that if this is my life indefinitely, I’d rather not go on, although I know I have to for my daughter. And I will. (Worry not, I’m not suicidal. Just in pain.)
Now you tell me: is there *anything* positive about a sick day? Not one fucking thing that I can see. And you know why this upsets me so much? It’s because inherent in the “it’s wonderful to be disabled — we’re just differently abled” mindset is the notion that if I just had a better fucking attitude, then I’d be happy. Forget the pain or the intense fatigue, or the fact that I’m not able to properly take care of myself or my daughter. My problem is my negative fucking outlook. Well, you know what improves my outlook? Feeling well.
I am not differently abled. I’m disabled. I have less ability than other people. If you have different abilities that are positive, that’s not a disability. That’s a fucking super power, and I can tell you that there’s nothing about lupus that gives me super powers.
If you want to look on disability as a positive, fine. Do whatever works for you. But please, don’t write condescending articles about how anyone who thinks of a disability as a bad thing is a bigoted ableist. I’m not a bigot because I like to be able to consistently get out of my goddamned bed. And I’m not a bigot because I think being disabled is a shit sandwich with an extra helping of shit. I’m a realist who wishes I could have the life that able-bodied people take for granted.
This post was originally posted on www.misstreated.org, a website devoted to fighting dismissive doctors and medical misogyny. Want to find out more? Sign up for Miss•Treated’s newsletter or share your story of medical sexism.