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Invisible disabilities and healing

Edited, much later: I indicate, in this post, that I’m getting better. I didn’t get better. My doctor put me on Prednisone without telling me it was a diagnostic tool, not a long-term cure. I got much worse after that prescription ended, and then I stabilized at a point where I still have pain, but it’s not debilitating most of the time. (This is the end of the edit. The rest of the post is as it originally appeared.)

I started to write this post as a Facebook update, but (well, for one, it’s long, but more importantly,) it’s actually pretty relevant to my recent professional life: it’s one person’s set of anecdotes about an Issue In Our Field, if you will. Although it’s hard, I think writing it is the right thing to do. I feel like I owe this post to other people who have been brave and made posts along a similar theme. (I hesitate to link, based on the subject; but please let me know if you’d like to do more reading, to get others’ perspectives on this, and I’ll point you in a couple of good directions.)

I haven’t been doing the “thankful thought November” social media meme, this month, even though it was kind of a highlight of last year, for me.

doctors-favorite-saying-its-all-in-your-head

Honestly, at the beginning of November, I wasn’t feeling that thankful. I was (unbeknownst to myself at the time, and knock on wood in the hopes that it’s really true) at the end of a very, very bad year, which started with an unexplained pain in my left foot beginning last fall and went through a series of stages, from hip pain starting sometime before ALA Midwinter, through [what should have been] a minor thumb injury that ended up costing me a lot of the use of my dominant hand for several months. There was some other pain in other places in there, too. There was a significant period where, between the hand and the hip (and maybe the shoulder?), even getting dressed was a challenge for me. So many things were a challenge for me, and the injuries seemed stacked in such a way as to make everything harder: My doctors and I tried a boot for the foot, which made the hips much worse. We tried a wheelchair, until the hand got bad. There was also a brief interlude with a cane. Eventually, my foot and hip treatment had to be dropped to “ugly shoes, orthotics, [non-narcotic] painkillers, and time” which caused its own problems, by being invisible to people around me, at least on days when I wasn’t limping.

The hand eventually started getting better, to the point where I could do most things with fairly minor pain, but the hips kept getting worse. Up until a few days ago, the hip pain kept me from walking up stairs unless I could pull/push myself up the bannisters with my arms, and I was only able to stand up from a chair when my arms could do most of the work. If I sat for more than an hour, moving at all afterward was painful; if I stood for too long, my foot ached. Doing everything was hard. I was on a strong anti-pain/anti-inflammation medication, and I couldn’t really move much until it had kicked in, each day. And on top of all of that, I needed 10-11 hours of sleep a night, to function right during the day—no doubt, some of it was because sleeping with pain is difficult, and some was because my body was on high alert all the time.

My friends and others who watched me be sad on social media might recall that I skipped ALA Annual—I couldn’t fathom a conference in Chicago, with walking and standing and sitting and 12+ hours of airline travel on both ends, when I was feeling so miserable. And, honestly, at the beginning of this month, I was pretty worried about LITA Forum, though that went fine: sleeping in the same building as the conference does help a great deal, it turns out. The three legs of the flight to get to Louisville, with over 2 hours’ worth of layovers between each, might have also been a blessing in disguise. And, happily, LITA’s 50-minute sessions were just the right length to prevent my muscles(?) from locking up. So that went better than I could have imagined. Nobody even noticed (out loud) that I wore ugly shoes the whole time. :)

Travel aside, I’m not going to lie: this temporary—and often nearly invisible—disability absolutely affected my work, though in weird ways. I got plenty done, in retrospect, including advancing serious organizational change. I’m proud of my record. But I think there was a problem with perceptions, with some of my coworkers, who maybe didn’t see all the things I was getting done—not that they would have if I were in the building, either—and resented not being able to call me at my desk all the time. (I hate the phone, so I liked that one aspect. And, joking aside, I should emphasize: I was awesome at replying to emails, or via email to phone messages, knowing that it was an issue.) Being a systems-type librarian, there’s almost zero need for me to work “business hours”—thank goodness, because the meds rarely kicked in before 11am. So I was able to work from home in the mornings—and all day, during the very worst of it, when the boot/chair made driving difficult. I’m still in the habit of dealing with email from home before I come in, actually. And I’m really grateful for the flexibility my job allows! We have generous sick leave, so I could make it to doctor’s appointments and not always have to make up the time by working late.

But, besides the perceptions problem, I also couldn’t seem to get it through a couple of my coworkers’ heads that meetings before 10am were a serious problem for me, so I had several kind of embarrassing moments, where I couldn’t get up from a meeting table—including twice in front of candidates for jobs. I’m adult enough to admit—but not adult enough to let it go, yet—that this really affected my relationships with those coworkers negatively, in a way that I think they still don’t understand. I trust these coworkers less, and I suspect that, although I’m back to visibly working long hours, in the building, they probably also trusted me less, for a while. Maybe they still do. (This is a subtle thing, folks, not an outright war, or anything. It shades our interactions; it doesn’t dictate them.)

And I guess this is the part where I feel like I’m writing about An Issue, rather than just my experience: it is really, really difficult to ask for accommodation, doubly so if your disability is invisible. How ridiculous do you think I felt, saying “I can’t be in before 10am”? And then, after getting up the guts to say it to everyone who needed to know, to then have people forget, forcing me to either suck it up and deal with the pain and the humiliation of not being able to walk/stand/sit, or to have to dredge up the resolve to ask again? (As implied above, I dealt with the pain/humiliation, because asking for accommodation and a public rescheduling… yeah.)

Oddly, some of the same people who forgot that particular need for accommodation did not forget that I was in pain (I mean, how could they, when I was visibly uncomfortable in most of the meetings they set up?), and they brought it up pretty constantly, trying to be sympathetic. Some of them offered lots of advice. Some offered to push me in the chair, which was well-meaning but disempowering. (Except this one coworker, who first warned me, then just kind of SHOVED the chair in the right direction to get me started on the carpet, and … actually, I was OK with that. It was fun/funny. I’m not sure my reaction is typical, there, though, so, always ask first!) I know it was all well-intentioned, and I’m grateful for the thought (truly), but a few people just kind of did it wrong, making it incredibly othering—I felt as though I was defined in their heads by the physical problems I was experiencing, rather than, you know, shared experiences over our multiple years of working together. I felt seriously pressured, with some of the advice (which included a couple of branches of alternative medicine), to the point that it got really awkward. I’m not sure I can put my finger on how to do all of this right, other than “Talk about something else, sometimes” and “SERIOUSLY, don’t give unsolicited advice.” Maybe “be socially aware enough to see if someone is uncomfortable” might cover it. Because, honestly, it’s sweet to wish a coworker well, and I feel bad for sounding ungrateful to some really well-meaning people, here; it can just get really overwhelming and isolating, too.

Through all of this, I learned a lot about the accessibility of my building (well, lots of buildings, but let’s focus within my scope of influence), especially while I was in the wheelchair. I developed opinions. Although I am—thankfully, due to the magic of Prednisone—apparently very much on the mend, I retain those opinions, and I share them pretty regularly. Unfortunately, I get the distinct feeling that I am a more effective advocate for accessibility now that I’m perceived as being able-bodied than I was when I was in the chair. That is deeply troubling to me, even as it matches my experiences in other intersectional spaces.

And, I should say, it wasn’t always better outside of work. Looking at the local tech community, now: I hurt myself rather badly, trying to be included in the photo [on a hillside, outdoors] for my first hackathon, last April (OK, technically, I hurt myself trying to stand up, after the photo); and I was left entirely out of a meeting [on a different hillside] and prevented [by a stairway] from networking with the other participants at the most recent hackathon, which was held in a building that is not really wheelchair accessible and did not have indoor plumbing at the time. (It does now. But I’ll tell you this: port-a-potties are hard, if you’re not able-bodied.) I did not feel that I was in a safe enough space that I could ask for accommodation, with that group, and perhaps that’s on me; I feel like maybe I should have tried. (Then again, this same group seems unwilling to adopt a code of conduct, so perhaps I was right about the relative safety of the space.) This is, frankly, unconscionable: out of all areas of human endeavor, what is there that should be more open to the differently-abled than technology?

Or libraries! Short of shelving books—which we leave to non-librarians most of the time, anyway—and moving around the building to do reference, I have trouble seeing why a mobility issue should have been such a problem for me. Faculty working outside of the building: pretty commonplace. We have a faculty member who can’t get a ride into work before 10am, and meetings are always delayed for that person. … I think, based on others’ stories about chronic illnesses and invisible disabilities in libraries—maybe in every field—that we have this distaste for the issue, which we transfer onto people who suffer from these ailments. In the case of chronic illnesses, I know there are a bunch of hypochondriacs and fakers, whose existence calls the stories of legitimate sufferers into question. (I’ll go a step further: I admit to having questioned the stories of legitimate sufferers, because of some of the hypochondriacs I’ve known.) But there are bad actors in every system; I’m not sure why we wouldn’t give a coworker the benefit of the doubt, for this kind of thing. I know that seeing someone with a chronic condition on good days can make their suffering seem less real, but if you’ve seen a bad day, that should really quell any issues you might have!

We librarians are hard on each other. Maybe this is just another example of that. I don’t know why, but we seem so unwilling to give our coworkers the benefit of the doubt. … I don’t have solutions, just questions. And exclamations. I’d be interested in reading others’ thoughts on this, though. Are we worse than other industries, with this issue? What do we do to fix it?

Right now, I’m readjusting my mental picture of myself, again. I had to learn to live with being much more fragile and much less able than I was used to, and that was hard. I learned how to be unable to do so many things—and to be forgiving of and OK with myself—and as I get back more and more things I can do, I’m trying to update my conception of myself and my abilities, to match. … All without overdoing it and re-injuring what’s healing. This post is kind of part of that. I need to let go of some of the things that happened. I also need to let go of my temporary identity, as a differently-abled person, while maintaining my eye for accessibility and my voice as an advocate.

Along those lines, maybe sharing this story will increase others’ empathy, or in some other way help someone else who ends up in a similar boat.

Published incommunicationdisabilityhiring and employmentlibrarianshipon a personal notesocial justiceusability

4 Comments

  1. Thank you for this. It is written clearly and with tremendous sensitivity toward yourself and those around you. I hope it opens some eyes and some hearts.

  2. Beth Mainiero

    As a retired Director of the Greenwich Library who had a hip replacement this summer and was left with a nerve pain in foot, I know that when nothing shows, it is as if it doesn’t exist to other. Thanks for sharing.

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