Cleaning House: Where Does the Disability Go?

Okay, so I’m not a typical neatnik. Not to the extent of Adrian Monk, anyway. But I do like things to be in their proper places, and in the right mood, I enjoy organizing. I particularly enjoy organizing my books and bookcases (yes, I’m a nerd). In fact, that’s something I’ve been doing lately, considering the books I received as gifts. My motto is, the addition of new books means letting go of some of the old ones and letting others enjoy them (such as libraries, charities, jail ministries, friends, and so forth). And as I was doing my organizing, it occurred to me: as we with disabilities try to organize our lives (not that we as humans can, in my view, but we try), where do our disabilities need to go?

Confused? That’s okay; it happens to writers sometimes. What makes sense in our heads doesn’t always look perfect on paper (or a blog post). So allow me to explain. For a long time, I’ve wondered where exactly in my life my disability is supposed to “go.” Where does it fit? How much space should it take up for me, physically, mentally, emotionally, and spiritually? How much spotlight is it worth? And it’s occurred to me that I’m not the only one asking such a question. Other people with disabilities–if you’ve been reading this blog and even if this is your first time–probably are, too.

I think we can agree on what the answer to this question is not. Whether you are the person with the disability, the parent or guardian, the colleague, or the friend, I think we can all agree that one’s disability doesn’t merit a starring role in anyone’s life. (And don’t give me the severity argument again; I don’t feel like re-explaining the “degree” of disability is largely and perhaps completely irrelevant, okay?) So, what does the “starring role syndrome” (SRS) look like? Pretty simple–it’s what happens when a parent overprotects his or her child with a disability, or a colleague, friend, or other person babies that person. Kind of like the way my maternal grandmother (the one with the wheelchair-using dog) used to be petrified that I’d fall just walking through her yard. Or the time my father, in the process of helping me set up my dorm room for Grad School Round 1, sat me down in front of my fridge and asked if I knew what the freezer was for. I’ll hold for the disbelieving remarks and assorted laughter.

Then there’s the I Can’t, I’m Special Syndrome (ICISS). Does anyone else hear the “ick” in that acronym? That occurs when the person with the disability purposely or subconsciously plays it up, usually in order to get sympathy, get out of doing something, or in the saddest cases, because they have been taught to think in “can’t” terms courtesy of the people without disabilities in their world. For me–and I would venture to say, for other people with disabilities out there–ICISS tends to happen in early childhood. It happened with me around first and second grade, when I had somewhat strict teachers I didn’t like, had an in-school physical therapist I also didn’t like, and felt that I was constantly being forced to do things (a. I didn’t want to do and (b. nobody else had to. So, the birth of ICISS. When I particularly wanted to push buttons, this was accompanied with the made-up singsong of, “I can’t do it, can’t you see? I have cerebral pal-sy!” (Ugh; flinching just thinking about it). Although I did become legitimately musical in later years, so…nah. My point is, this makes for a rather obnoxious kid if it happens in early childhood–and an adult who will not only get on everyone’s nerves, but also succeed in convincing everyone he or she truly is unable and incapable.

The third “diagnosis” in this list is what I will call the Don’t Mind Her Syndrome, or DMHS. This occurs when either the person herself, or the people surrounding her, believe and act as though the best way to deal with the disability in question is to ignore or conceal it as best they can. I myself have been in DMHS mode for years. I suppose after meeting a ton of people afflicted with SRS, and suffering from ICISS (and not the subconscious kind, either), this was inevitable. I used to fantasize about going away somewhere–like, say, summer camp–and successfully hiding my CP from everyone else, so that when and if they found out, they would honestly say that (a. they didn’t know (b. they never would’ve guessed and (c. what did it matter, anyway? I think I got this idea from one of Melody Carlson’s books aimed at teenage girls. The Allison O’Brien series–great quartet of books, by the way–featured a secondary character named Heather, a talented, beautiful, and blind English girl. When she and Allison go to camp, Heather becomes worried that if the directors discover her handicap, she’ll be sent home (actually a legitimate worry, I believe, as this book was set in about 1948). And I thought: if Heather can do it, why can’t I do it? It’s not like I need help feeding myself or cleaning myself or any of that big stuff. (Remember, this was BPS, when people with severe disabilities, who did need help with “the big stuff”, intimidated me).

Well, my mom put a cork in that plan. First of all, I was dumb enough at 13 to share that ambition with her. And she was right; you can hide blindness if you’re really careful, but eventually, it will pop out, as will CP. So I didn’t hide my disability, although I did go to Camp Carefree, which was a camp especially for kids with disabilities and illnesses. But over the next decade or more, I guess I kind of woke up. I had a disability, it was not going away, no one was gonna give me sympathy or special treatment because of it, and in fact, some people might find me pitiful, repulsive, or annoying because of it. I mean, look at the way kids at my school laughed at or otherwise negatively treated the “special” kids. Look at the way my teachers blamed me every time my computer or printer malfunctioned, or seemed reluctant to modify certain assignments. I had some so-called “friends” who dumped me when it was convenient, and wondered if my friendship had been convenient because it made them look good. And although I read tons of Chrisitan romance novels (many in historical eras) and thought about love, I never got asked on a date. Couple that with the stereotyped, pitiable images of the disabled on television or in books, and the jokes made about them (i.e., we’re apparently unable to do anything physical in relationships), and you can see how I got comfortable with DMHS.

And then, I went to college. Now, college can have its own highly detrimental form of “special ed” (more on that in a future post). But in my experience, college and grad school were the first times CP took a real backseat. Instead of sitting through IEP meetings with the refrain of “she can’t” ringing through the room, I went to the disability services office, got modification letters, handed them off to the profs, talked about specifics if necessary, and boom, we were done. I couldn’t believe it. The whole thing was surreal–and yes, a little scary, because all of a sudden, nobody would be there saying, “You have to do this; she paid to go to school here.” Nobody except me, that is.

I got used to it. I’m slowly becoming a better self-advocate, and thus, a better advocate for others. But it wasn’t always easy, especially in class, and especially in writing class. As a writer, I took a lot of those–Intro to Creative Writing, Fiction, Poetry, and Creative Nonfiction. Creative Nonfiction was the biggie, because there, we wrote about ourselves. And both my professors (I took the undergrad and grad versions) cautioned us not to harp on certain things too much, such as our bad breakups, or awful parents, our ___ (fill in). And let me tell ya, I saw a lot of harping, and some downright weird–though compelling–stuff. But, in the true spirit of DMHS, I thought if I ever mentioned CP, I’d be harping.

That lasted about half a semester.

Creative writing classes of any kind are therapeutic. Fortunately or unfortunately, depending on how you look at it, this causes students to, sometimes, discuss problems in a workshop session as if it were a therapy session (the psych kind, not the PT and OT kind). This is what happened during the workshopping of my first long piece. Disability made it into the piece in a bigger way than I thought it should’ve, and when allowed to speak at the end, I apologized to my classmates for that. Well, there was an older guy in my class–married, a kid, gone back to school after a few years off (this was grad). I don’t know exactly what he said, but the bottom line was, I had to make up my mind about whether to “own it” (the CP) or “ignore it.’ And the way he said it, ignoring wasn’t the good option.

So, what does “owning” a disability mean, exactly? I’m not sure. I think it’s different for every person, but I do know it involves accepting the disability as part of oneself, and knowing it’s not a bad thing–such as a “syndrome” that makes you ill, bad, or undesirable. And, as I’m not very good at this yet, I’m sure this post will come back to bite me. But I certainly hope it helps and encourages all my readers out there. 🙂



  1. Dana Lumpkin · August 11, 2013

    Just found your site and LOVE it. Love your style of writing — genuine, informative, humorous and witty. I hope my daughter can follow not exactly (but closely) in your footsteps, as she’s a senior in high school and looking forward to college. She also loves to write. She has a lot of the same writing characteristics, although yours, of course, are much more professionally honed! 🙂 She also has CP, and I’ll tell her about your site. I think she’d love it, too.
    I want her to specifically read this article about owning your disability. She uses a wheelchair and is subconscious about people thinking she’s not intelligent. She does certain things with her outside appearance that she thinks will prove this point, but I try to tell her who cares what other people think. They don’t even know you. (Of course, she’s 17, and I guess that does sound like a typical 17-year-old with regard to their appearance.)
    Thanks for your stories and insight,

    • independencechick · August 11, 2013

      Thank YOU, Dana! Your affirmations have uplifted me today. I wish your daughter all the best. Owning your disability can be difficult, because there is indeed a stigma that if you have any kind of disability, you are automatically stupid. But that’s when you need to knuckle down, devote yourself to where your strengths are, and fight against that stigma and others like it. You can do that through a blog, artwork, poetry…there are thousands of possibilities to explore, and I hope your daughter does. Blessings to both of you.

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