Monday, March 2, 2015

On Being a "Disabled Student"

Sometimes I wonder if I'll ever get used to being a person with a disability. Is that something that somebody can "get used to?"

A few months ago, I was relating a story to one of my friends about a situation that I had dealt with earlier in the day.

"I was halfway to orgo lab when I realized that I left my lab notebook in my room and I had to walk all the way back and get it! I ended up being ten minutes late to class but the lab professor still let me take the quiz!" [The policy is that if you're late to chemistry lab, you get a zero on the pre-lab quiz.]

My friend nodded, confused at my tone of surprise. "Well, yeah. I would have let you take it too."

"Really?" I was shocked.

She started to laugh, then motioned to my legs with her eyes. I followed her gaze and only then did I "get it."

"You can't really run across campus to get back to your dorm room. You had the perfect excuse for being late!"

I started laughing too, because it had never even crossed my mind that I had an excuse.

I remembered this story because of something that happened this morning. This has been one of the snowiest winters we've had in years, and as I was walking to class with one of my friends, I stumbled on the snowy pathway leading from my dorm. I caught myself in a snowbank and leaned on a mound of snow to help me keep my balance until we reached clean pavement. If it sounds awkward to you—yeah, it was—but I didn't think much of it because at this point, awkward is kind of my life. ;)

 "Sometimes I think my life should have some heroic music playing in the background, with a couple of slow-mo scenes thrown in," I joked to my friend as we continued on our way.

After my class (a genetics exam! It was a crazy day.), I opened up Yik Yak on my phone. (For those of you who don't know what Yik Yak is, it's a social media app in which people within a 10 mile radius from each other can anonymously read and post comments.) The top Yak was something along the lines of: "Get it together, [name of my college.] How about you shovel the pathways so the disabled students don't fall? I just saw a girl fall because of the lack of shoveled snow."

It took me a few moments to realize that this comment was specifically referring to ME. I wasn't offended by it (quite the contrary; I think this person was well-intentioned), but I don't think I'll ever get used to being a "disabled student." I simply don't think of myself as "disabled," and I don't know if I ever will.


As I find my place in this world, I'm discovering that the more I accept my disability as part of who I am, the more I realize just how ABLE I am.

16 comments:

  1. Being on college campuses in winter while disabled is a singular experience. Ramps blocked with giant balls of plowed snow, getting stuck in the middle of the slushy street...I even remember trying for 20 minutes to get to an outdoor middle school foreign language class , when the ramp was covered in snow. I had no gloves, and ended up just giving up and going back into school and warming my hands on a teacher's heater. Becoming okay with your status as a disabled person takes a long time (sometimes a lifetime) but I've learned 'disabled' is not a bad thing to be, but it IS part of my identity.

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    1. The word "disabled" -- at least to me -- seems so pervasive. I think I'm uncomfortable with it because (again, to me), describing someone as "disabled" implies that they are not able. I don't have any negative feelings toward people who use the word "disabled," but at least at this point in my life, my personal preference is to say that "I have a disability." I totally agree that having a disability isn't a bad thing (and in fact, it can be a blessing, as I've written in other posts), but it definitely takes a long time to accept it. Maybe you're right -- maybe I'm not at that stage of acceptance yet and someday I will be comfortable referring to myself as "disabled."

      I wish I could say that I'm surprised about the experiences that you described above, but unfortunately I can definitely see that happening, and I've been in situations like that myself a couple of times. :( Good for you for knowing when to just go back, though! Staying inside with a heater sounds much better than trying to battle snow.

      I don't use a wheelchair, but the snow has definitely posed a challenge for me this semester...I can't wait for it to melt!

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    2. The way it was explained to me (that really resonated), is this. We are disabled, but not by our physical bodies. We are disabled because we live in a world that is not built for us. Able bodied people are able because the world works for them. They can go anywhere, and do anything they want. They aren't limited by stairs or snow in front of ramps, or narrow doorways, or not having the adaptive tech they need to get from place to place. I was so much like you in college, and identified as a person with a disability. That was because for me, my entire life, being 'disabled' had been coded as a negative thing,

      Winter's definitely not my favorite time of year - not only the snow - but the cold's affect on my spasticity is not my favorite thing either.

      I'm with you. So excited for warmer weather!

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    3. Oh wow...I love that way of thinking about it. You're right...sometimes when I'm out with my friends or making plans, I wonder what it must be like to not have to worry about what is accessible!

      I can relate HUGE to the spasticity thing as well...sometimes when it's really cold outside, I literally feel as though I cannot move at all, and it's so frustrating.

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    4. Thanks for the support...it's really awesome to find someone that can relate and that's "been there" before!

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    5. I really loved that way of thinking about it, too! Right? It's got to be nice to be able to just go somewhere and KNOW you'll be able to get up to the front door, through the door, to a table, into the restroom, etc.

      Spasticity in the winter is no fun. Through the years it's become a bigger problem. I've found though that medicated & heated adhesive patches (like for your back) work well for me on my legs. I've started wearing them if I know I'm going out in the cold (my achilles' are really sensitive to cold and seize up.) And they really help. (I can link you to the ones I use, if you're interested.) And that's assuming you don't have any kind of allergy to any of the ingredients too of course.

      I've really loved following your blog, too! I feel like we have a lot in common. Both multiples (I'm a twin) and both with CP, growing up having a lot of surgeries, etc. Definitely open to talking anytime! Don't be afraid to reach out.

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    6. Oh wow, I never even thought of using heating patches to help with spasticity...so clever! That's definitely something that I'd consider, although I'd be a little nervous about it -- do you have any pain sensitivity issues because of your CP? Sometimes I don't always feel pain, so I got a pretty bad burn on my back from a heating pad when I was younger and I didn't notice it until much later! If they get pretty hot, I'd be afraid that I'd burn myself without realizing it.

      I can't wait to connect with you more...you're right, we really do have a lot of similarities!

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    7. The ones I use are here: http://smile.amazon.com/Absorbine-Patch-Therapeutic-Relief-Large/dp/B008V4X4UK/ref=sr_1_1?ie=UTF8&qid=1425602385&sr=8-1&keywords=absorbine+back+patch (I find them cheapest at my local dollar store.) And they're not actually heated like a heating pad, they just kind of give off a warm, menthol-like sensation. You can leave them on for up to 8 hours, but I try not to wear them more than once a week, which isn't necessary anyway. Once for a long period relaxes the muscle enough that there isn't pain anymore (at least, for me.) I actually do have pain sensitivity issues and I never even considered the idea that it could be CP related! Wow.

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    8. That's awesome!! I will definitely look into them...this cold weather has been making me so stiff and it's frustrating because I'll go back to my room and stretch but as soon as I'm out in the cold again, I tighten right back up! Thank you so much.

      Yeah, it likely is related to your CP! I was actually told that most people with CP have some degree of sensory deficit in addition to their motor difficulties...mine are pretty subtle, but I am less sensitive to pain in my lower body, particularly in my lower back and the upper part of my legs. I guess it makes sense from a neuroanatomical perspective since the somatosensory cortex (one of the primary sensory areas of the brain) is adjacent to the motor cortex (the area that is damaged in spastic CP). :)

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  2. Wow. I love this, K and have to wonder when my own son will realize he's not typical... It's been icy and snowy and horrible here and Tucker fell three times on the way to the bus the ONE day we had school... and none of the other kids fell. He didn't seem to notice but yeah, YOU ARE ABLE. Love this and OMG it's March

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    1. Good for Tucker for getting up three times after he fell! That kid is awesome...When he does realize someday that he's not quite like the other kids, I hope he also remembers that HE is able, too. :) And YES, OMG it's March and we still have multiple feet of snow on the ground! :o

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  3. Wow....the first thought as I read the opening was how cool that your friend could joke with you as she explained of course you couldn't run. Not "you can't run" but in a friendly way showed you she doesn't think about you having a disability at all. Your CP (to her) is just like your hair. It's what makes you perfectly you.

    Can I say how much I love that the commentator was standing up for a stranger? He wasn't poking fun but outraged that a fellow student was struggling and spoke up. How freaking cool.

    But I also get how both incidents took you by surprise. Because you don't say you are a disabled (insert noun here), you say you are X and you never want people to view the CP first and you afterwards. I so get that feeling.

    I worry often that someday Bridget will know she is mentally disabled. A weird part of me hopes she never does, because I want her to be as confident as you and know that her path is different and more difficult than her peers it doesn't mean less than

    Here's the cool part: by showing them your ABILITY those around you are educated on how "dis" really isn't important at all.

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    1. Your comments are so insightful, Kerri! You are so right about my friend...I loved that too. She is so casual about my disability and has no issues talking about it and yet she doesn't make a huge deal of it.

      And YES, as surprised as I was about being referred to as a "disabled student," I was so grateful to this stranger who stood up for me. I love the community on my campus.

      Even if Bridget does realize someday that she has a mental disability, I'm sure it will be fine because she has an amazing mom who will remind her exactly what you just wrote -- that even though her life might be different and more challenging, it's not less than. xo

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  4. First of all ... you're taking Organic Chemistry?! I had friends in college who took it and told me it one of the most difficult class an undergraduate could take, if not the most difficult. Props to you!

    As for thinking of yourself as "disabled", I can relate. I get the feeling that like me, you've been used to being disabled for a long time, I mean the practical stuff. What's different is embracing it as an identity, too. Personally, I found it quite a relief to go ahead and do that. Don't worry about what the word seems to mean literally ... it's just a name for people who experience a variety of physical or mental conditions. It's also like having a second family of people you can bond with, if you want.

    Good luck with Orgo!

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    1. I took orgo last semester so I'm all done for now! Yeah, it was a really challenging class...and the labs were long and hard too! A few of my friends withdrew or failed out, so that was kind of terrifying, and the class itself was starting to take over my life because it required so. much. work. But my lab professor had a disability too so that was a cool part of the experience. :)

      And yeah, I think you summed it up pretty well. I've gotten pretty good at dealing with my disability on a day-to-day basis but it still catches me by surprised when someone calls me "disabled." Like I said to Tonia, maybe it's just a stage of acceptance that I haven't reached yet, but I will definitely keep what you said in mind and maybe I will get there someday! Prior to college I hadn't really reached out to other people with disabilities, and it's a relief to finally be able to do that and to embrace my CP as part of who I am...so I can definitely relate to that aspect of it. :) I feel like I'm still on this journey of exploring who I am and what I'm comfortable with, especially as it relates to my disability.

      Thanks for stopping by...I love your wisdom!

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  5. K,
    Oh I've missd reading your beautiful thoughts. You are amazing and I hope to give you a small hug one day to Thankyou for always making me feel your stories at such an emotional level xxx Coop knows he has a disability never lets it get in his way but loves all the free stuff he seems to get given when he flashes a smile! ;)

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