Auntie SparkNotes: Matriculating While Disabled
Today, we've got two letters on a theme:
I'm going to be a college freshman in a few weeks and I have Rheumatoid Arthritis. Because of my unique condition, I get a single room along with other helpful accommodations like personal note takers, extended time, etc. Unfortunately, many of these accommodations and the physical manifestations are noticeable and I'm very scared of how other students will treat me if they found out that I have a disability. I've been trying to keep my disease on the DL so that I'm not labeled a "freak" like I was in high school when I told the truth about my life. What should I do or say if someone is trying to uncover my secret? Should I just come out and be open about my life?
I'm headed off to college soon, like so many others. Unlike so many others, I have a really, really bad problem. Almost six years ago, when I was twelve, I had metal rods put into my spine to try to correct my scoliosis. The problem is that I am in serious pain most of the time - there are some days I can't even do stairs, and I'm really careful about the way I move. In my little corner of Appalachia, everyone knew about it and it was mostly ignored, as I think it should be. But whenever I leave town, people are always asking me if I feel all right and if I need anything and if I need them to grab something for me, making it clear that it's not as invisible as I'd like to think. In a few weeks, I'll be surrounded by people who don't know anything about my back. How do I deal with it - brush it off and say I'm fine, which will work for a few weeks until they start getting really curious? Explain it, which I would go mad doing more than once? Pretend I don't know what they're talking about, which will work until they see the scar and freak out?
Eeesh. I'm sorry, Sparklers—this doesn't sound fun at all. And in a way, having an invisible (or less visible) disability like these is much more complicated than having an obvious one; after all, a person who wears a prosthesis or uses a wheelchair doesn't have to decide whether to tell people about his condition, or try to hide it, or explain why he can't play contact sports. But since your disability isn't readily apparent, it's even more important that you set the tone for how it's revealed, how it's talked about, and how people treat you as a result.
Because the first person people look to in order to figure out who you are is... you. You can draw a short, straight line from your own self-image to the way that others see you. And if you treat yourself like a freak—if you hide, lie about, and obsess over your condition as though it makes you inherently unlikeable—then you can pretty much guarantee that everyone else is going to be just as uncomfortable with it as you are.
Whereas if you simply present your condition as what it is—namely, just another part of who you are—then everyone else will act accordingly. So, here's your plan.
1. Accept that this is something you'll have to talk about whenever you meet new people. There's no getting around this, so reconcile yourself to it now. If your disability has noticeable manifestations—a limp, a brace, a personal note-taker—people are inevitably going to ask about it. And even well-meaning friends will probably make boneheaded, idiotic, and offensive comments because they don't know what to say or don't know any better. The more patience you have (including the patience to say, "Hey, I know you probably didn't mean it this way, but that's actually really insulting") the better.
2. Figure out in advance how much info you're comfortable sharing by way of explanation, and practice a short response that you can use whenever someone asks about it. For example: "I have [scoliosis/a joint condition/a chronic injury] that makes movement difficult. It's not a big deal, but there are certain things I can't do. Anyway, I appreciate your concern, but I don't really like talking about it."
2a. This should be enough to satisfy most casual inquiries. But because some people are pushy jerks, also practice saying, "I just told you, this is personal. I don't want to discuss it." Saying this clearly, directly, and unapologetically is the best way to deflect people who obliviously tread on your boundaries.
3. When it's comfortable and convenient, feel free to stop the questions before they start. For instance, you can avoid uncomfortable interactions with your professors, your advisors, or your RA by emailing them in advance explaining that you have a medical condition with noticeable symptoms and asking that they please not remark on it. No harm done, and no actual conversation necessary.
4. And, in a similar vein, let the gossip mill work for you. Since you don't want to repeatedly explain your condition to people, give your more trusted friends permission to share the information that a) you have a disability, and b) you prefer not to talk about it. As these things go, it's a win-win: your classmates get just enough information to satisfy their basic curiosity/concern about your well-being, and you get to matriculate in peace.
5. Finally, don't be afraid to let people know, explicitly, how you want to be treated. If you don't like being asked how you're feeling, say so. If you always need help with a given thing and would rather not have to ask each time, say so. And if you'd rather let people know when you're up for an activity, rather than being invited to things and having to always say no, say so. By and large, people are decent, caring, and eager to do the right thing—but without a certain amount of direction from you, it's easy for them to do the exact opposite without knowing it.
Follow these steps, and soon everyone will view your disability in the same way as they view your hair color, your hometown, and your choice of major. And here, by the way, is what's NOT going to happen: a repeat of your high school status as a "freak." High school is the last bastion of complete and total a-holes, and therefore, it's a uniquely horrible place for people who are obviously different. But for whatever reason—probably because you're at college, whereas the neanderthal douchebags who make fun of physically disabled people are all working at gas stations—that stops once you graduate. And out here in the enlightened real world, people just don't ostracize or mock each other for their physical peculiarities.
Also, there's no required gym class and you can go to bed whenever you want. Pretty nice, huh?
Do you have advice on dealing with a disability at school? Share in the comments! And to get advice from Auntie, email her at firstname.lastname@example.org.