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CRAWLING OUT OF BED: Internalized Ableism and Privilege

Two years ago I was living at home with my family, taking a few classes at a local community college, and saving up to return to university. It was the start of November, and I was watching a Golden Girls marathon with Jo, my sister-in-law. Sitting in an office chair, my feet resting on the bed, for hours. The phone rang downstairs and when I bent my legs to get out of my chair I felt a sharp pain in my knees, like I had been doing a few dozen squats. I took a multivitamin, ate a banana, and forgot about it.

The next day I couldn’t get out of bed. I had bought a bed with the mattress sunken into the frame, low to the ground. I let myself imagine that the joint pain I was feeling was caused by walking up and down stairs every day. I pulled a chair next to the bed, put my hand on the seat, locked my elbow, and heaved myself up. As things got worse, I would hold onto the towel rack in the shower, but was still falling pretty regularly. I stopped being able to pick up my nephew, terrified I would drop him. He was 2 at the time and did not understand.

When I went back to school in the Spring, I was taking 18 hours, two of which were Kinesiology classes. Every morning, I would lower myself onto the floor and scoot my way to the top of the stairs. Grab banister, pull, heave. I’d take a Naproxen Sodium, limp to the bus station, go to my first class, and then walk as fast as I could to be slightly late to my walking class. This went on for a few weeks and I made an appointment with a campus doctor. She ran some blood work, then referred me to a rheumatologist. She told me that my blood work indicated an autoimmune disease. Like the one my grandmother had. The one my mother, aunts, and cousins have: Systemic Lupus Erythematosus. The great pretender.

So I had these symptoms and this blood work. Which was enough for the campus doctor for tell me I had probably inherited the disease BUT! not enough to have the Disability Office on campus modify my curriculum. Diagnosing an autoimmune disease can take months of blood tests and visits to a specialist and I had neither money nor insurance. This is why I almost didn’t graduate because of an exercise class.

Each class was a very public, very embarrassing struggle. I learned to ignore and resent my legs – they were giving me dull, repetitive information. I focused intently on my breathing. I visualized my pain as energy. I listened to “My Body is a Cage” by The Arcade Fire. My walking got faster but HAHA the completion time kept shrinking. The pain was not the worst part. The worst part was having to be so aware of my body, every hour of the day. The worst part was being a young man with a pronounced limp. I would wait until classrooms had cleared before getting out of my chair. Every day was a lesson in humility, a lesson in fighting my own self-pity. There were days when I needed to talk to someone about how this condition was robbing me of my self-concept, unraveling my idea of myself as strong and self-sufficient. But I imagined that as long as I didn’t talk about it, my life could continue on exactly the same as before.

Over time, things got better. The weather warmed, my muscles developed, and I pushed myself. There were days when I’d put my ear buds in, steel myself, breathe, and focus only on my stride. Beatdown, can I tell you that there were days when I felt proud of myself? Days when coming in last made me feel like a champion?

In the two years since I have learned things about my own body. I have learned that once my knees start wobbling, GAME OVER. There is no powering through. There is no mystical internal light of determination that I can draw on – if I keep going my body will fail me. This has been a humiliating lesson to learn. But I can still walk. I can still exercise within limits and these limits expand the more I push them. I have also learned how much privilege I carry. I don’t have chronic insomnia like other members of my family. I’ve never lost a job because of being hospitalized, like my friends with Fibromyalgia. If I’m spending time with someone, and I don’t want to have to go into the whole story I can take an anti-inflammatory and ignore the pain, or blame it on fatigue.

But from the neck up, little has changed. I don’t like talking about my condition, which remains undiagnosed. Every time I do, I feel like I’m doing it for attention or sympathy. I talk about myself in ways I would never tolerate from anyone else. But when I ignore my own internalized ableism, it makes it harder to see the ableism in others and in myself. I still feel conflicted about identifying as disabled, given the amount of privilege I carry at this stage. Watching my mother struggle with doctors who will shower her with pills but who won’t have a conversation with her, watching a friend of mine fight with her insurance company over treatment and having them act like she’s just a big waste of time, space, and money – these people are fighting battles that are still YEARS away for me (I hope, GAWD, I hope). In the mean time I will try to stay as healthy as I can, and do what I can to support them.

Thank you for listening.

27 Comments

  1. another maggie wrote:

    Yeah…I only just realized that I’m not entirely able-bodied. It’s hard. Because disability has to be on a continuum, obviously! But I know I never really thought about that until I realized I’m on the continuum too. I am, and my fiance is too, with his epilepsy…

    I have asthma, and so for one thing it’s invisible, and secondly it’s much better than it used to be. But oh man did it hurt when someone made an insulting comment about my pleasure that (at 27 years of age) I’d begun running and I had just run 5k for the first time ever. Something I truly didn’t think I could do!

    Sorry, that was longer than I expected. I find this relevant to my interests.

    Thursday, June 24, 2010 at 4:13 pm | Permalink
  2. Teaspoon wrote:

    Internalized ableism sucks. I wish you well in your efforts to come to terms with it.

    I also wish you more days you don’t have to count your spoons than days you do.

    Thursday, June 24, 2010 at 5:02 pm | Permalink
  3. Just today I posted something called “You can’t even tell perfect bodies apart.” It’s about my daughter’s illness and subsequent disability, a disability she denied for years. She said she didn’t want to set herself apart. One of the points that I made is that you don’t NEED to set yourself apart — society is more than willing to do that for you.
    Americans have a skewed notion of disability. We want the happy ending, but if we can’t get that then we at least want happy cripples.
    If it’s kosher to post URLs, here it is:
    http://www.donnafreedman.com/2010/06/24/you-cant-even-tell-perfect-bodies-apart/
    I’m so glad I found this site — through Dating Jesus, by the way. I’ve bookmarked you guys. Thanks for writing what you do.

    Thursday, June 24, 2010 at 5:34 pm | Permalink
  4. Anon-anon wrote:

    Thank you for writing about this. We, the invisibly disabled, need to write more about it — for ourselves and for others.

    I was diagnosed with fibromyalgia at age 11. I’ve lived longer with it than I have without, and I don’t remember what it’s like not to be tired or sore. But it was still a long, difficult process to accept that I have limitations. It was really hard, especially when I was in my early ’20s and my friends had unlimited energy for school and nights out and work and everything. Now that I’m in my late ’20s, it’s still hard.

    So thanks, Garland, for sharing. It means a lot.

    Thursday, June 24, 2010 at 5:36 pm | Permalink
  5. Michelle wrote:

    Wow, Garland, this is a great post. I can definitely sympathize because the last 2-3 months I’ve started having repeated symptoms (possibly fibro? don’t know, don’t have the $ for a doctor, don’t know if I could stomach arguing with one if I did).

    It does effect me on a day to day basis but I feel really really conflicted about self-identifying as disabled, for reasons that I would never apply to anyone else, like, hey! there are days when I can walk for a whole 30 minutes or an hour without having a pronounced limp! or – I don’t have a diagnosis yet! I stopped taking aleve (or the off brand of it haha) because I actually read the warning label and got freaked out about stomach bleeding (since I was taking about 8-10 tablets a day just to take the edge off and the label says “no more than 3 in 24 hours!”, whoops.).

    It’s a constant battle for me to take myself seriously in regards to it, so I get really fucking weirded out about talking about it with other people (like, say, I’m pretty sure if I told my mom she’d tell me I was just being whiny – maybe I’m not giving her enough credit but I could see it happening).

    Sorry, that got really long. tl;dr: I like this post. thanks for writing it.

    Thursday, June 24, 2010 at 6:05 pm | Permalink
  6. SMB wrote:

    Every time I do, I feel like I’m doing it for attention or sympathy.

    Wow, can I relate to this. I’m in the process of getting diagnosed with… oh [heavy sigh as familiar list is begun] probably sarcoidosis, possibly Crohn’s, probably not rheumatoid arthritis or lupus but they’re not ruled out, and maybe just chronic mystifying erythema nodosum.

    I don’t self-identify as disabled… well, I’m still getting used to this condition only a couple of years and several flare-ups in (some of which didn’t happen when I had especially good healthcare access). But I think the bigger reason is that I’m scared of accidentally appropriating a marginalized identity for cred. I know myself, and because of that I can’t say with confidence that I’d never do such a thing.

    Anyway. wank wank, point is, thanks for this. I’ll probably be thinking about it for a long time.

    Thursday, June 24, 2010 at 6:59 pm | Permalink
  7. mulierosity wrote:

    Thank you for writing.

    Thursday, June 24, 2010 at 7:04 pm | Permalink
  8. Emmy wrote:

    Man, TBD is on fire this week! Thank you so much for writing about this here. I actually don’t have anything constructive to add (because I’m so BLOWN AWAY), but thank you.

    Thursday, June 24, 2010 at 7:46 pm | Permalink
  9. Sally wrote:

    I take a lot of comfort from this piece. I recently participated on a forum about intersectionality where this topic came up for me for the first time. I’ve struggled with depression for years, it has undoubtedly affected my life, but I don’t truly claim mental illness as a factor in my identity. Because of my privilege and the fact that my depression is not written on my body, I feel like I’m appropriating disability. It’s nice to know there are others grappling with complex identities.

    Good luck on your journey.

    Thursday, June 24, 2010 at 8:46 pm | Permalink
  10. Chrematisai wrote:

    Excellent post. Thank you. Also, this: “I feel like I’m appropriating disability.” I feel the same way sometimes, as someone who suffers from occasional panic attacks. For the most part, it doesn’t affect my everyday life, but when the panic attacks hit, they hit hard.

    Also, on the subject of being a young person with a pronounced limp, I have an old knee injury that will probably never completely heal. Thankfully, over the last few months, it’s gotten a lot better, but some days it’s almost unbearable. I’m 23 and I walk with a cane. I can practically taste the irony – my paternal grandmother still doesn’t have a cane, and she’s approaching 80, and her father lived to be 92 and never needed one.

    Friday, June 25, 2010 at 12:24 am | Permalink
  11. k not K wrote:

    Oh dude, that sounds awful.

    I definitely got a taste of this when I broke my foot a month ago. You wouldn’t believe the depths of self-hatred I sunk into just because I can’t go places as quickly as normal, or because my friends have to wait for me when we were walking somewhere, or because I get sweaty from the effort of walking on crutches, or because people on the street give me sympathetic looks. I’m mostly over it now, but the first couple of weeks seriously made me feel like I’d become a burden on everyone around me.

    And that’s not being disabled at all, because in a couple of weeks I’ll be off my crutches and I can start PT.

    I can’t imagine how tough it must be to have that internalized ableism gnawing away at you every single day.

    Friday, June 25, 2010 at 4:10 am | Permalink
  12. Samantha b. wrote:

    I became Bipolar 1 when I was 33, so I can definitely relate to the idea of the rug slipping out from underneath you and losing the sense of who you’d always been. It’s somewhat odd to me that feminist blogs have been the most helpful to me in dealing with my shame over my illness because there’s so much frank discussion. That’s part of what I was alluding to in Sady’s thread, that there’s a real value to aspiring to emotional consistency, i.e. that you aim for equality and respect across the board, even if that goal is damned elusive and slippery.

    So thanks for this post. I hope it was near as valuable to write as it is to read.

    Friday, June 25, 2010 at 7:56 am | Permalink
  13. genna wrote:

    I enjoyed reading this. All these comments I had about being inspiring sounded incredibly patronizing when I wrote them out, but Garland and all of the commenters before me are amazing at living life.

    @Another Maggie: You ran 5k with asthma? I can barely do stairs. So impressed!!

    Friday, June 25, 2010 at 8:47 am | Permalink
  14. speedbudget wrote:

    You’ve articulated some things I’ve thought about my particular condition, Grave’s disease. I’ve been living with it for so long that I don’t see how much it affects my life, or I deny it, until somebody asks me how I got my diagnosis and what the symptoms were like. I recently Googled it, and read the Wikipedia entry. It was very disturbing. I never wanted to admit this was a serious disorder.

    And yes, writing about it makes me uncomfortable. I hate that I feel like I’m appropriating sympathy.

    Friday, June 25, 2010 at 9:05 am | Permalink
  15. Sarah Morehouse wrote:

    There is no mystical internal light of determination that I can draw on – if I keep going my body will fail me.

    THANK YOU THANK YOU THANK YOU! It’s both depressing and liberating. Pain is not weakness leaving the body. Pain is the boundary markers of your current ability.

    Friday, June 25, 2010 at 9:26 am | Permalink
  16. Tabs wrote:

    First, thank you, Garland. I consider myself temporarily able-bodied (with some serious mental disabilities) — and this was a good read. It is NOT easy grappling with these things.

    Secondly, I’m all for empathy. Reading all of the comments – either we are an unusual group, or the idea of an able-body is a phantom.

    Friday, June 25, 2010 at 10:39 am | Permalink
  17. Abby wrote:

    This is a great post.
    I have a disability that is physical and so not invisible but goes fairly unnoticed and isn’t obvious at first.

    Until I was about 16, I would talk about my disability in a very negative way, I would try to downplay it, I would say “my hands f-ed up”.or something similar and not really explain it. I didn’t want it to be a thing. I didn’t want to be labled in terms of disability.
    I’ve moved through my internal ableism for the most part, I still don’t like being defined by it, but its easier and I can talk about it.

    I was born with it. It took me 20 years to deal with it and it still frustrates me! Dealing with something entirely new and redefining yourself in terms of disability is, I think, a lot harder.

    Friday, June 25, 2010 at 1:34 pm | Permalink
  18. Robert wrote:

    This was wonderfully written, and very helpful. Since so many have proceeded me, here goes my closet door. I was diagnosed with AIDS about two years ago, after umpteen years asymptomatic HIV+. I’ve been telling most people I’ve met since that I’m ‘retired’, which is technically correct. I qualified for medical retirement from the Civil Service, and was obliged to apply for SSDI (which, amazingly, was approved the first try).
    I have been coming to grips with my reluctance to tell people ‘yeah, I got AIDS and had to go on disability’. Part of it is not wanting to be ‘that guy with AIDS’, since I’m doing well enough that, if you didn’t know, you wouldn’t know.
    Also, my thirteen year old son is going through some physical problems; his feet and legs hurt all the time, so his walking looks like a marionette with twisted strings. His fellow middle school students are as discreet and considerate about this as early adolescents have always been, so he’s going through his own issues about being perceived as, as he puts it, a ‘special needs’ kid. I’m trying to help him through this with a minimum of self-hatred and stifled rage.

    Friday, June 25, 2010 at 2:32 pm | Permalink
  19. Abigail wrote:

    Invisible disability (one that occasionally pops up as very visible — ie, legs failing or noticeably wobbling…) is a bitch, no?

    I’m the daughter of the earlier comment-leaver Donna Freedman. And I had something called Guillain-Barre Syndrome. (Something to explore, though if you did have it, it’s moot now.) It temporarily paralyzed me, then threw me back into the world believing that somehow it was all behind me.

    Ya know, other than the crippling fatigue and Post Traumatic Stress Disorder. I know what you mean, though, about the GAME OVER scenario. I’m fine… right up until I’m not. Then I am so exhausted that I can barely pick up my feet to walk, and driving is a terrifying experience if I’m out and about.

    Sometimes, when I push way too far, I get so exhausted that it actually hurts to breathe. Try explaining that one to an able-bodied person.

    I got GBS at 19, spent age 19-20 in severe denial and have been working my way through things ever since. Often, in miniscule increments because I’m stubborn and couldn’t for years utter the “D” word.

    It’s been 12 years since I was ill, now. I finally applied for Social Security Disability when I was 26, got it at age 28 and am getting off of it this next month. (Only because someone granted a miracle, and I found a full-time telecommuting job I was qualified for.)

    I look back now wryly on my progression of accepting disability. From not even considering the word — being all better now — to the middle-ground — disabled, but ya know, not really… not like in a chair or anything… just, I get really, really exhausted really easily — to full-blown admitting it and all the way to admitting it without feeling defensive or searching the person’s face for some sign of skepticism or scorn.

    Of course, now I’m repeating the process starting this past year as I’ve been diagnosed with Bipolar II — a more mild version of Bipolar Disorder, but one that explains a lot of the chaos in my life.

    There’s a great site you should look up called “But you don’t look sick…” I think the name says it all.

    Friday, June 25, 2010 at 6:38 pm | Permalink
  20. JMS wrote:

    I am currently able-bodied in some regards (mobility, almost always) and currently experiencing disability in some other regards (strength, exhaustion, cognitive function) and I experience a lot of the same self-interrogation. Thanks for sharing this!

    Friday, June 25, 2010 at 9:50 pm | Permalink
  21. I had seizures as a child caused by a cyst in my brain. After the cyst was removed, the seizures went away until my senior year of high school. They weren’t very frequent at first. I could handle them. I kept my job. I went to college and got a 4.0–for a while. And then they got worse. And worse. I quit working. I got on disability. I went to school part-time. I took semesters off. With the seizures came this horrible, all-encompassing depression. I blamed it on everything and everyone I could think of except the seizures. I didn’t want to whine. There must be something else wrong. It was unthinkable that I wasn’t strong enough to handle these seizures. Counselors would sometimes ask to talk about the seizures, but I would always say I didn’t need to talk about them. They weren’t the cause for my unhappiness. It had to be something else. And then something happened. I got a new neurologist who tried me on a new medication which actually worked. And I was actually happy. Could it have been that I’d been denying the impact of my disability on my psyche for 12 years? I’d worked through a lot of stuff with my counselors, but I’d never admitted that my epilepsy was actually difficult and depressing for me.

    Don’t hold these feelings in. You need to talk about them. Saying that you are frustrated with your body doesn’t make you ableist, it makes you human. We all get frustrated with our bodies, with the limits they put on us, with the expectations we have of them, and with the expectations society has of them.

    I hope I haven’t gone on too long. I hope there’s something applicable in what I’ve said.

    Friday, June 25, 2010 at 11:00 pm | Permalink
  22. GarlandGrey wrote:

    @Everyone Thank you for everything. None of your stories were too long. I was worried that people would come out of the woodwork to tell me I was a giant phony. Instead I got very supportive people with stories that helped a lot. My life is awesome. And you are the reason.

    Friday, June 25, 2010 at 11:44 pm | Permalink
  23. Samantha b. wrote:

    @Abigail, that’s fabulous that you were able to find work; disability payments are pretty cruelly low.

    One point: I don’t think bipolar disorder’s quite so tidy that you can refer to bipolar II as “milder.” I mean, it’s done all the time, but I’m not sure it adds up that well as far as lived experiences. There are a different set of symptoms; bipolar I has a delusional component that II doesn’t have. But, for me, my bipolar I is really responsive to medicine and has been pretty much been obliterated, albeit along with a degree of my personality. I have other friends who are bipolar II, on the other hand, who aren’t responsive to meds at all and live with a lot more symptoms. So I dunno. I understand in a DSM-IV-y kind of sense a doctor might call bipolar II “milder,” but it might make me reevaluate whether I wanted to see that doctor; it’s just so lacking in precision. So I sort of have this gut reaction that if we’re trying to do disability advocacy here, we should acknowledge that the specifics of people’s illnesses and lives are a lot more nuanced. Hopefully we’re not ranking people on a growth chart of crazy, you know, and instead we’re allowing for differences and complexities?

    Saturday, June 26, 2010 at 1:05 pm | Permalink
  24. Sunflower wrote:

    Abigail@19: “There’s a great site you should look up called “But you don’t look sick…” I think the name says it all.”

    I second the recommendation, and provide a link.

    Sunflower

    Sunday, June 27, 2010 at 9:23 am | Permalink
  25. Robert wrote:

    GarlandGrey – if I was part of that, you have brightened my day.

    And, since I got to help my kids build a fort in the living room out of cardboard boxes (and my oldest son actually let me have the last toasted marshmallow), hey, that makes for a VERY bright day indeed. Thank YOU.

    Monday, June 28, 2010 at 4:13 pm | Permalink
  26. I am a bit low on spoons or I would read all the comments. Likely I am being redundant but when you have the ability you do need a diagnosis. There may be medications that cut down on the amount of times you wobble or the long term damage to your knees that comes from the inflammation. I do not have Lupus but I do have a lot of disabilities and I understand, though I don’t know what you are feeling as that is individual, the process. You have my support and as always I am personally willing to email you about things as needed, just be aware replies take time. There is a comment form on my blog and you do have my email via this post.

    I came via Womanist Musings.

    Tuesday, June 29, 2010 at 10:58 pm | Permalink
  27. UnAttributableSpoon wrote:

    I know this is really late and no one will probably read it. I have Fibro, Small Fiber Neuropathy (it’s degenerative, the nerves in my skin are dying, once those are done other nerves will begin to die as well), and hypothyroidism. To most people I look perfectly normal, if tired all the time. Like one of the first posters, I began having Fibro symptoms early, as early as 7 or 8 years old though I wasn’t diagnosed until my early twenties (I’m 25). I too don’t remember life before pain and fatigue.

    It’s funny, because my mother doesn’t really see me as disabled and finds my relating as such to be a little over-dramatic. She means well, but unless she can live in my body for a couple days, she’ll never know what it’s really like. I think the Arcade Fire’s song the OP listened to is perfect. It feels like that to me, too.

    Friday, July 9, 2010 at 4:27 am | Permalink

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  1. [...] This post was mentioned on Twitter by Garland Grey, Sarah Pavis. Sarah Pavis said: @walidk don't read this then! http://tigerbeatdown.com/2010/06/24/crawling-out-of-bed-internalized-ableism-and-privilege/ [...]

  2. Marvelous Monday : Wicked Whimsy on Monday, June 28, 2010 at 9:14 am

    [...] A post I can definitely sympathize with: Crawling out of bed: internalized ableism & privilege [...]