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    12th February 2007

    On Being Disabled (part 1)

    I’m about to write out a list (of sorts) of complaints (of sorts) and I’m actually kind of excited about it. So instead of picturing me as a grumpy old man making this list, picture me squinting through my glasses – which I rarely wear in deference to my contacts – with an impish grin, unruly hair, and green skin; and all of that would be accurate except the green skin part, which just came into my mind. Actually, on account of the awful winter we have had here in Colorado, I’m as pale-skinned as I have ever been since that day when I joined the world of those living under the sun. Let’s count those as the first two complaints and get started:

    I just finished working on my taxes and FAFSA. I filed my taxes online for the first time, primarily because my mom recommended it. Well, I must say it would have been much easier for me if I hadn’t made several critical mistakes in choosing a filing service – however, I must also say that the services that I tried to use were quite deceptive in trying to get me to pay to file my state income tax form, which I eventually did because I was so tired of trying to escape paying. Being a FAFSA pro, filling that form only took a few minutes, but I was already a little bit fried from my tax fiasco.

    Which leads me to an exciting announcement:

    According the IRS.

    There came a page on the TurboTax turboguide to the 1040 where it asked me to check all that apply, and so I checked the box that said “Full-time student” and then stumbled upon the “Disabled” box and wondered whether I ought to check that also. On researching the qualifications for claiming a “Disabled” exemption I found that what this really means is that “you are either age 65 or older or are under age 65 and retired on permanent and total disability and receive taxable disability benefits”. There are some other stipulations, but clearly I do not meet the requirements for being disabled.

    Of course, I am receiving some small payments from Social Security (SSI payments, actually) because they consider me to be disabled and I don’t have a job. This money from the government I do have to claim on my tax return and FAFSA – but fortunately I don’t get enough for it to be taxable.

    All this leads to an idea that I have previously thrown at a few people: Lets do a better job of categorizing our “disabled” or “handicapped” folks. I mean, seriously, I’m tired of the fact that all the “handicapped accessible” parking spots and bathrooms have a picture of a person in a wheelchair on them, and yet most of the people using those spots are not wheelchair users. Let’s suck it up, steel our self-esteem, and call it what it is.

    If you’re getting on in years and have a hard time walking a good distance, that’s ok, we should give you a pass with a picture of a rocking chair so you can park close to the store – I honestly don’t care about parking close as long as I have room to unload my wheelchair without someone running me over (that’s the real reason for having those hash marks in between the handicapped spots).

    And if you have a genetic predisposition for obesity coupled with the means to turn that predisposition into reality, lets get you a special pass that functions as both a parking permit and gets you into the local rec center. We love you and want you to enjoy life – but we also hope that we can help you enjoy life with more mobility and health.

    And there are scores of people with various mobility impairments that don’t use wheelchairs – how do you think they feel being grouped in with us “no-peds”? Are wheelchairs simply more recognizable than crutches or walkers or braces of different sorts? I suppose that it is easier to group us all together… It is hard to tell disabled folks apart sometimes; I mean what with us all looking the same and all.

    I’m not trying to be offensive here, but I just had to get that out. Onto a new subject.

    I’ve been noticing some funny thought processes for me lately. It’s hard to describe. Somewhere between deja vu and the spark of genius (ha! probably the spark of insanity…) but it makes me a little paranoid. Maybe it’s an unforeseen – or unkown to me – side effect to the 80mg of Baclofen and 30mg of Ditropan I take each day. Or maybe it’s two years of frequently interrupted sleep at night catching up with my brain (I should be sleeping right now, actually). These two issues are related really: See, the meds are to help relax my spasticity, and in turn it is the spasms that very often either 1) keep me up at night, or 2) wake me up at night.

    But, there is an interesting development in my sleeping patterns, and that is that I have been rolling in my sleep without really even noticing it. This is something that most people with paralysis don’t do on their own because the signals telling their brain to roll just aren’t getting through. Rolling is kind of cool, except that now I have been waking up sometimes in uncomfortable positions with a crick in my back or something of the sort.

    And finally, Happy Birthday – a day late – to my brother Michael, who is now 18 years old. Don’t worry, I didn’t forget his birthday; I congratulated him shortly after we finished watching Snakes on a Plane last night with some of his friends. I’m not sure there could have been any better way to start another year of life…


    8 Responses to “On Being Disabled (part 1)”

    1. Josh Leo says:

      I have yet to do my taxes, the only good thing about doing taxes is the tax return.

      maybe they use the wheelchair because it has the most impact of all images. If people see a cartoon of a person on crutches they might think “ah he just sprained his ankle, the lazy butt can make it from the next parking space over” but if this is the logic, maybe they should just forgo the whole chair and just show a quadruple amputee on the ground.

      On different but related note, I will just honestly say that I am not 100% familiar with your current status of mobility and healing. I nevre see you and therefore only interact with you via blogs…

      I wake up and roll over at night a lot too, but probably for different reasons: my cat wakes me up a lot and i have to locker her out of the room or throw her off the bed. and also my body just gets sick of lying in one spot at night… anyway, I will be looking forward to reading part 2 whenever it arrives…

    2. karen dilfer says:

      hey daryl,

      greetings from st. louis!

      i had a random discussion with you at a party one time about hand cycling and mandoling-playing. i’m in school learning how to be an occupational therapist, (this may or may not materialize one day) and i kind of spend a lot of time trying to wrap my mind around things like disability and baclofen.

      i think you are totally right about the whole not being disabled thing.

      …And if you really want a way to define and/or classify functional impairment, there’s this interesting book called the international classification of functioning disability and health. (published by the WHO) It’s cool because it operates on the basis that having an impairment doesn’t necessarily mean that a person has disability.

      (Sorry, if you already know all of this…)

      Anyway, I’m sure that this is way more info that what you were thinking about when you were complaining about acessible parking.

      But it’s kind of cool.

      Hope you’re having fun playing the mandolin.


    3. Daryl says:

      I actually wrote this to Josh as an email:

      Thanks for the comment. I’m not sure if part 2 of that post will be the next time I write or in a couple weeks. I figure I can probably say a lot of things about being disabled – or impaired as Karen Dilfer just informed me I could call myself – and since that is one thing that I am in a unique position to do that a lot of people are not able to do, I figure it is something I ought to do every once in a while.

      And as for rolling over because your body gets sick of lying in one spot… yeah, that’s the point, I think, when our bodies function properly, they automatically move to keep us from developing sores or tissue breakdown or fallen asleep arms or anything of the like – but with paralysis the body 1) sometimes doesn’t realize that problems are happening and 2) sometimes can’t move to do anything about it anyway.

      So, as for my current state of mobility, I would say that I am gaining some use of lower body that I didn’t have before – I can stand and even “walk” around if I have something to hold onto – but because this movement relies a great deal on my utilizing the spasticity in my legs (which is hard to explain without giving a demonstration) I can’t yet do it in a way that would make “walking” functionally useful most of the time. I do use this to get up and down stairs and to get stuff off the top shelf and to stretch out and get off my arse – I get tired of sitting – and sometimes to talk to people at eye level (or look down on them, since I’m 6’1″…).

      Anyway, I think some of this improvement in functionality has made it so that I sometimes roll over at night without thinking about it, something my body didn’t do on it’s own immediately after getting out of the hospital.

      I think that I’m going to post this as a comment on my site below your comment…


      And Karen, thanks for writing – you’re going to be a great OT, so stick with it. And sadly I haven’t played much mandolin at all lately, though I have played very much guitar.

    4. Angela Crawford says:


      This is Angela (Karen Dilfer’s roomate). She just told me I should read your blog and I must admit I found it very fascinating. I am doing research with people who have mobility impairments and the relationship between physical activity and community participation. I also work through a place called the Enabling Mobility Center which does many things, but is mostly a completely accessible gym for people with mobility impairments. Both of my research mentors use wheelchairs. Dr. David B. Gray is a quadriplegic and the most brilliant man I have ever met and Kerri Morgan is a paraplegic and an amazing teacher, speaker and rugby player. You should google them.
      Anyway, I have learned a lot from them both academically and just about life in general, and I must admit that I would not ever consider them “disabled”. Why?? Just because they can’t walk or write or do things like open a snickers bar?? As a society we have not figured out this whole disability thing. The bad thing is the more we try to rethink it, the more confused we get. Do you know how many definitions of disability there are??? Ok, I don’t know the exact number, but it is outrageous. Disabiltiy is defined differently in almost every law which is a problem when it comes to recieving services. Beyond policy there is an entire problem with our attitude as a society in general. Hmmm…I have no solution. I can, however, see you accomplishing great things for the disability population (the biggest minority group in the country). If you want an interesting read about people with disabilites and health care check out “More than Ramps” by Lisa Iezzoni and Bonnie O’Day. Ok, that’s about all I have to say. I must go do some OT homework.

      Angela Crawford

    5. karen dilfer says:

      Ahhh! Wait! That’s not what I meant to say…

      (this is good, coming from a kid who is doing a master’s project on communication…)

      This is a slightly different idea, but how about this: it’s the barriers in a person’s environment that create disability.

      For example: I wear glasses. If I take my glasses off it’s a barrier–I can’t see. But when I wear the glasses, I can see. Do I have a disability?

      And just for the record: I don’t think you’re impaired or handicapped or disabled or whatever other terminology is floating around out there. That, my friend, is a classification you have to make yourself.

    6. Loren says:

      Interesting write-up. As you know my mother has degenerative knees and has mobility issues. I am not sure what her process to do so was, but she got ahold of a handicap parking sticker and makes good use of it. Clearly she doesn’t need room to get a wheel chair out, but good parking spots make her more mobile.

      Congrats on seeing snakes on a plane. Your enjoyment of it takes some of the heat off of me after seeing it with Carrie 😉

    7. Daryl says:

      Yeah, so this little piece has gotten some interesting reaction to it. Good reaction, I think. I’m not disabled, huh? A distinction unto myself? Well, I’m sure as hell not getting up any more of the Colorado 14ers (not yet, at least…), which means I’ve only climbed about half of the 56… I still live life well and enjoy it – but there are definately some things I really loved to do that I can no longer do. But I don’t want wheelchair accessible mountains, you know – that would ruin the mountains! It means that I have to adapt…

      I don’t of course, really think of myself as disabled, anyways. But this has given me some good food for thought for “On Being Disabled (part 2)”.

      And Loren – yeah, I think that making people more mobile is the idea – without classifying them. And as for snakes on the plane, well, there were a number of moments in that movie when I wasn’t sure whether to be freaking out or laughing. Usually laughing won, but it was nothing but business when Samuel L. delivered that trademark line.

    8. karen dilfer says:

      Okay, I promise this is my last post.

      Maybe the 14ers aren’t as far away as you think…

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    Copyright 2005 by Daryl Holmlund - All rights reserved.