on snow days, disability ethics, and a secret

My deck is a lost cause.

My deck is a lost cause.

We finally got that Big Snow that our strangely gentle summer had promised us. Seven and a half inches, folks- more in north city. Anyone who’s tried navigating a Baltimore side- street after a major storm knows what today looks like; we’re snowed in, drinking cocoa and watching movies all day. For all the weather- related complaining I do about Maryland— and I’ll kvetch with the best ex- pat New Englanders about Maryland’s inability to handle winter— there’s something to be said for a snow day, and whenever we get more than five inches, that’s what we do here. My Up North people are shaking their heads as they read this, I know, and that’s cool— I get it— but hey, we don’t get this very often, I’m into it when it comes around.

It’s funny; I was just in Connecticut for Friendsmas in late January, right before the first of a few blizzards they’ve gotten. About six inches of snow fell the evening that I arrived in this one- stoplight country town out in way, way, forgotten eastern CT— you have no idea, there are goats in these folks’ backyard, it’s like that, just bliss— and still, when I woke up at about 8 the next morning, the roads were beautifully plowed. I’d forgotten about that efficiency. I mean, I didn’t really forget, obviously, but having lived away for so long it was a bit of a shock; Maryland doesn’t need that level of preparation, so we always take forever to get our act together when we get a real winter.

So I’m home, in that not- going- anywhere- unless- I- want- to- trudge- down- to- the- convenience- store kind of way, which means we can spend a little time together, and that’s pretty rad.

I’ve been thinking a lot about some advice I gave to Kiddo recently. It’s been bothering the hell out of me, so we’re going to parse it out together, okay? She’s been looking for work for a while now, and we were talking about whether or not she should disclose her disability when it came up on some of the applications she was filling out. (She has a mild mobility impairment and uses a cane at times. At times this is an invisible disability and other times she’s obviously impaired.) Some applications do ask this; they’ll state that applicants can receive priority hiring or accommodations in the workplace. It isn’t illegal, as long as it isn’t overtly used as an elimination technique. This is where things get tricky, though; we all know that the law and real life are two separate things, right? When it comes to the ADA, this divide can be really, really apparent.

I’m not happy with what I told her, which was not to disclose. Not because there’s ever any reason to be ashamed of being disabled, but because we still live in this society that reads the word “disabled” and only sees limitations. And sure, absolutely, there are a few “can’t”s in her life. She isn’t carrying around anything over 75 pounds any time soon- her hips aren’t going to allow that. She’s not walking 6 miles a day, either, but you know, that’s really not a requirement for most of the jobs she’s applying for, either, so I still don’t see the point of disclosing. And if we’re being frank, pretty much everyone out there— disabled or not— has a couple of “can’t”s that they wouldn’t overtly state on most job applications/ resumes. (An example of one of my “can’t”s that does get put out there on the regular, to my perpetual shame: “Can you speak Spanish?” Of all the languages I’ve studied, I still can’t speak the one that would be most useful in my own country.)

It’s about getting your foot in the door. It isn’t as though your potential employer is getting less than they were looking for; you’re working around stereotypes and discrimination. It isn’t precisely honest, and that bothers me in a tiny, itch- in- the- back- of- my- brain way— I have a bit of an all- or- nothing policy when it comes to that. You have to get the interview, though, or you just don’t get the chance to prove your potential value, and they’ll see the cane once you’re there.

It gets a little dicier, I think, when the disability is invisible- if she’s having a no- cane day, or in my case, when you just can’t see it most of the time. I don’t consider my condition anyone’s business but my own, and I do keep it to myself until I want to disclose, if I want to disclose— and if I feel safe disclosing. That’s an important point, too; there are workspaces that aren’t safe for that sort of thing, so if you can keep it to yourself, if you have the kind of disability that is invisible, sometimes it’s just safer to keep quiet. That’s so complicated; having the option to request accommodation or understanding, but opting out for safety’s sake. I know the law, but I know real life, too, and like I said: the two don’t always hang out. Sure, there are lawyers, and that’s great, but court cases take a while, and jobs are hard to find these days.

I have a sense of guilt about having the privilege to hide; isn’t there a responsibility to push more people to accept the disabled? (Of course there is, that isn’t even a real question, obviously.) And I want to be out there, fighting this garbage, because it is garbage, just so much trash, being done by trash, by people with trash in their heads. Right now I’m hungry, though, and feeling a fierce responsibility to pay my mortgage; there’s that, too. This is how it keeps happening. This is how it goes.

It’s frustrating. I’m out about my MS in one of the places I’m working right now, and it’s come up in conversation with a few co- workers (but never management, and I don’t intend to bring it up with them) at another. Still, it’s not like I’m exactly in hiding, you know? I keep myself on part- time/ freelance everywhere and jealously guard that status in order to stay free for medical appointments and potential relapses- and to maintain some privacy about my actual medical condition. It’s a way of living, and it works, and I’m actually pretty happy in it, but it isn’t a lifestyle that’s open to everyone, and the idea of keeping quiet about it— sort of hiding the fact that I’m a part of a community that I love, honor and respect— strikes me as both dishonest to myself and disrespectful to the community itself. I don’t just want to own that part of my life & self; I want to be working for the community. How do I do that and still make sure I’m covering the groceries— and encourage my kid to do the same?

(An aside: I am so very not in love with working for other people, y’all. Nothing that I am doing is at all bad or unpleasant— I like quite a bit of it— but there are also things like this, which is a bag of suck.)

In the end, she doesn’t have many options: her disability is pretty obvious many days. She has one of my canes— a handmade wooden number, made out of reclaimed wood, sleek but still just a wee bit twee, so it’s stylishly obvious, at least. For me, the answer is the same: just get my foot in doors and then own my MS so folks can get an idea of what that can look like. Take at least that risk, and all that. It’s never been a frightening idea until now, even though I’ve actually lost a job over having MS before (hey, yoga— but that’s a different story for a different day). I just— hate the idea of needing to keep your mouth closed to get that foot in the door. I can’t help but see it as a reality, but it hits me wrong, on all levels.

I’m scattered, and angry, I think, for feeling pushed into this place— she really needs work, the economy still stinks— even here where there are jobs— she needs to be given a good example, I’m trying to raise a good little angry crip, she’s a punk like her mother and I want to keep that going but all of that needs balance. I’d prefer my ethics with a side dose of “can still pay student loans”, but I’ll take a somewhat clear heart over feeling like a traitor any day, I think.

In other, brighter news, I have a secret, folks. It’s a pretty awesome secret, and I’m really looking forward to sharing it— soon— but it isn’t quite time yet, and just between you and me, I’m really enjoying the act of just having a solidly nice something to hold and keep and muse over. It’s been a little while; this is really, really nice. Don’t worry; I can never keep my own secrets for very long. I’ll be back and spilling the beans in no time.

  One thought on “on snow days, disability ethics, and a secret

  1. February 22, 2015 at 5:38 pm

    There’s another side to this… a darker side. If she does get accomodations for her disability, such as a cane, and then on days not need it? Even one day? Sometimes it gets yanked. It’s like those on SSDI, have one good day and be seen having it? Someone will think that is all of your days. I hate the all or nothing when it comes to disability.

    I think you are raising a daughter who is aware that our society is pretty screwed up in a lot of ways. I’m not sure if this is an extinction event from assholes everywhere or it’s that so many other countries get it right and we don’t? I’m not sure. It sucks and you are definitely doing your very best with her.

    I’m looking forward to hearing your “secret” and maybe, just maybe, it has something to do with color. You are so very good at that and so very missed in that world.

    • February 22, 2015 at 6:28 pm

      I’ve felt this, too. I go between visibly & invisibly disabled, and it confuses the people around me. The idea that you’re either disabled in this very visible way 24/7, 365 days a year or not at all is really damaging.

  2. February 24, 2015 at 2:09 pm

    I have migraines, but I wouldn’t ever declare them on a resume. So far I’ve been lucky and have been able to work around them. So far. Sometimes I would love to just hide in a cave and pretend there is no other world out there.

  3. twieder
    February 27, 2015 at 2:56 pm

    Interviews are, for everyone, about putting their best qualities on display, while creatively disguising their less desirable ones. Is it worse to not mention a physical condition that will not have an impact on job performance, than to gloss over why you left a previous position, or give a rehearsed, but disingenuous, answer to “What’s your worst quality?”?.

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