Personal Zine-In-Progress (?); haley brown May 2014
I’m thinking about putting this or something like it up on Facebook because I’m so stressed about everything and I just kind of want to address it…
[hello friends, acquaintances, colleagues and strangers! I usually don’t get quite so personal in such a public way, but you know… I have something to say (and I’m tired of wondering what people are wondering!).
so a lot of you know that I have a physical disability, or you’ve probably at least noticed my unusual angles or heard me refer to doctors appointments with a particular wariness. For the curious or concerned, I have BRITTLE BONES, or in fancy: Osteogenesis Imperfecta (OI).
I used to crack ribs just sneezing, then went through a long period of relatively few breaks, and I’ve now started fracturing more often again, mostly in my legs. Who knows what exciting adventures the future has in store for me! All in all I definitely don’t see my disability as making me less able to enjoy life and I definitely don’t wish I were cured. I can’t imagine who I’d be without it!
One thing that has been tricky and stressful is occupying this often “in-between” space. Often people don’t think of me as disabled because of the way I walk or move, and other times they definitely do, like when I limp or use my wheelchair.
It’s actually quite stressful for me to start using my chair more, not because I don’t like it (I’m a speed demon in that thing!) but because I get anxious about how people will respond. I dread the inevitible shocked, pity-laden: what haaaaapennnned??! because there’s really not much of an answer most of the time. uh… I walked? I stepped off a curb? It’s usually less that something has “happened” and more that this is kind of just the way my body IS and it might not have been as visible before.]
[hypertrophic callus formation in OI type V:
If you’re interested in some detail, my type of OI is characterized by the unusual ways my body handles its frequent fractures. My bones get these “callus” formations on the site of the fracture, a swollen tangle of calficication, soft tissue, etc. It’s creative, no doubt, but also super obnoxious and painful. These tend to cause me more frustration than the fracture itself because it’s hard to know how to take care of them or how to get them to leave me alone. These fluffy, unruly monsters are what I refer to when I talk about having a “callus.” there’s no way to treat or remove them, so I just gotta hang out and try to be supportive while my skeleton does its own thing.]
[Ways to be a SUPPORTIVE BUDDY to me (haley) right now.
Many of my friends don’t necessarily need to think about physical disability all that often. This isn’t an end-all-be-all guide, just a few ideas to start with…
First Things First: I know you’re probably uncomfortable. That’s fair. Nobody teaches us this stuff and it’s different for everyone anyway and it’s pretty taboo to talk about. Here’s an opening to that conversation; hoping we can all be a little more comfortable.
Second, it might be the unfortunate case that I’m your first or only buddy with an obvious physical disability, and whether or not that’s true, it’s worth reminding that I cannot represent or speak for disabled people “in general” or anything of the sort – each of us is different with different physical and social needs and capacities. In fact, this little zine may not even accurately represent or speak for future versions of my self at times, because the nature of my ability and disability fluctuate so much!
Please avoid assuming what my body can/should or can’t/shouldn’t do. I always appreciate when people check in and all it takes is a question: “how are stairs for you right now?” “would you rather drive?” or an invitation “let me know if we need to take a break.”
It really helps me make good decisions for my body when I can gage times / distances – how far is the restaurant, how long is the event, etc. Also knowing the accessibility info about a space! meaning ramps / stairs / elevators / how crowded the place is.
I’ll ask if I really need help navigating a curb or hill, but most often I really prefer not to be pushed in my wheelchair. I’m trying to gain the strength / skill / confidence to do that stuff on my own right now. Also a pet peeve is being patted on the head when I’m in my chair.
I TOTALLY appreciate people’s concern and interest, but questions like: “how long will you need to use a wheelchair?” “how long will your recovery take?” or “how will this affect your future plans?” are really hard and stressful to answer because I genuinely don’t know.
Other questions or more open-ended questions are totally welcome! please feel free to ask me about my disability or experiences. Recognize that if I’m not in the mood to chat about it, I may just be exhausted and you weren’t wrong in asking.
It’s especially exciting to talk about these things when folks are informed in being an ally or learning about the ways in which society constructs disability. (If that excites you, feel free to check out the resources attached or hit the google!)
Finally, please let me know the ways in which I can support you! If there’s one thing disability has taught me, (there are actually many) it’s that interdependence is a thing! part of my intention in being open about this is hoping to help make space for others to do the same. ]