But it’s NOT the same

Dave Hingsburger recently had a very nice column about the pros and cons of labelling. He made some very fine points, including the key idea that, “the issue is how we value the difference that is labeled.” This reminded me of something similarly related, which is how we value the accommodations. With many sorts of disabilities, we have ways of getting around the internal disabling factors, and the environmental handicapping factors. Some of those ways involve assistive devices (ADs), also known as assistive technology (AT).

One of the problems we run into, sometimes unexpectedly so, is that our ADs do not “fix” the problem and make it go away. This is discouraging for the person who is newly diagnosed or newly treated for an issue, and who hoped that simply by getting some snazzy piece of equipment, everything would “be back to normal”. Well, no. Being disabled is the “new normal”. Arguing for, with, and at one’s assorted pieces of equipment is yet another layer added to our lives.

And as we quickly discover, the rest of the world is under the horribly mistaken impression that our ADs fix the problem and make it go away.

“I think it’s generally not sensible or fair (or nice) to assume that the existence of assistive devices makes everyone alike and that we therefore should expect everyone to “shape up” and meet our expectations of normality.”
~ jane meyerding

In truth, ADs are not the total solution to the problem, but rather, are part of the system of coping methods. For example, hearing aids amplify sound (really good hearing aids only amplify the particular frequencies that are most useful), but they also amplify every other noise of the same frequency range, and don’t clarify what’s being heard. For someone who’s hard of hearing, the aids are part of their daily strategies, along with lip-reading, captioned video, vibrating alarms, and maybe a spouse or partner with a broad vocabulary of midnight nudges.

I can’t tell you how many times my teachers, bosses, or even relations have suggested that I just needed to “get a hearing aid” to fix my auditory processing disorder. Polysyllabic Expletive! If only it were that simple. The nice part about having an invisible disability is that people don’t acquire a bunch of stupid attitudes about you, for example, the way they do if you use a mobility aid (you’re ignored, patronised, infantilised, manhandled et cetera). On the other hand, the bad part about having an invisible disability is that people jump to a bunch of other stupid conclusions about you (that you’re lazy, stupid, rude, snobby et cetera).

I’ve mentioned before (“Read my clips”) that being able to acquire a useful AT can be problematic for many people. We have to find out it exists, find out if it’s actually helpful to us personally, and find out if we can afford to buy or finagle it. There’s always a learning curve, and it’s the nature of life that “the only constant is change”, so what we need also evolves over time. We always hope that this latest thing will not require extreme efforts of adaptation, and will actually solve more problems than it creates. If we’re truly blessed, it will even solve problems we didn’t realise we had, or that it was originally intended to address. (I’m a pragmatic optimist.)

But whatever happens, we have to remember that our assistive devices and assistive technologies are not really devices to restore functioning, but to adapt functioning. They don’t “make us normal”. Instead, they make us able to achieve similar results, albeit by other means.

This is an important point: the whole deal about being disabled (in some fashion or another) is that you can’t do things the same way most everyone else can. But it’s your means that are disabled, not necessarily your ends. The rest of the abled world will naturally be focused upon the means, because it’s obvious that how you do things isn’t the same. We don’t want to be worried about doing things “the same way everyone else does” or trying to appear to do things the same way everyone else does. It’s a given that’s not going to happen. Spending outrageous amounts of effort trying to pretend and “pass” is really a waste of time. The process should not be held in higher regard than the results.

It’s really the results we’re after. It’s the results that are what we are all about as humans: those physiological and psychosocial and self-actualisation needs we have to fulfill. How we get ourselves fed is less important than having a choice of what we eat, when, and with whom. How we chat with our friends isn’t important; what matters is that we can find the means to talk, sign, text, sing, or dance away through the hours, because we have friends who appreciate us and what we have to communicate.

8 Comments

  1. Jennifer said,

    2 November 2011 at 21:04

    Well said!

  2. Joyce said,

    22 August 2011 at 14:13

    oh and some simple conversation seem to be fine, but when it comes to more complex sentences or in non-themed discussions that i find it very hard to keep up. Things i could easily comprehend before suddenly seemed so hard and alien to me, resulting in me having to ask other people to REPEAT.

    I really wonder, if it’s me having this all along and only notiving from 17, or did it just happen after 17. hmmmm

  3. Joyce said,

    22 August 2011 at 14:07

    hey Andrea, I only have this symptom of APD (not being able to decipher meanings of sound) from around 17, or at least that’s the age i consciously noticed sth. was wrong with me, as i find it hard to hold day-to-day conversations. Although from a very young age, i find it more comfortable looking at people as they speak, it’s just more comfortable that way. And i seem to be able to follow teachers in class until 17…..

    Have you been having APD since you could remember? or did you start to have it at an older age?

  4. Mary said,

    30 April 2011 at 1:09

    my child has just been diagnosed w/ APD at the Able Children’s Foundation in Fort Collins, CO. We went there because the founder patented a filter device. We receive it soon. A friend of ours raves about it. Will let you know.

  5. Arla said,

    22 September 2007 at 0:58

    I’ve had the assumption that my back support means I no longer have pain from sitting. WRONG!

    Also a major assumption, supports aside, is that everyone shows they are in pain in the same ways. But I don’t. Same with fear. If I say very calmly to someone that something really hurts or I am very afraid, how much notice do you think they will take? Especially if it’s something that wouldn’t cause pain to most people (like those finger clip devices hospitals use to measure blood gases and pulse rate).

  6. qw88nb88 said,

    20 September 2007 at 22:12

    Patrick,

    Here’s something that helped me. When I went to see a rheumatologist for my then-undiagnosed arthritis, I explained the pain issue by way of comparing it to other kinds of pain (“as bad as a bladder infection”).

    I also described it by way of describing in what ways the pain and stiffness was affecting major life activities. I explained how I was sure to change positions, use good body mechanics, take over-the-counter meds promptly, but that I still could only work in the yard or on the house for an hour, or maybe two with several breaks, instead of all day long like I used to do more recently.

    I explained how it affected not just one part of my life, but also my ability to work, and also my interactions with my children and my husband.

    I explained how dealing with this pain impaired my abilities to deal with other issues, like auditory processing and ADHD.

    These kinds of concrete details about the breadth and scope of the impairment were more illustrative about the significance of the pain and how it affected me than the mere “one to ten scale”.

    Merely telling people “I’m in pain” doesn’t seem to be very effective, especially if you’re (also) one of those people who doesn’t “emote” pain in ways that others pick up (I tend to get very withdrawn — if I’m actually to the point of tears, then I’m in profound pain). Describing how the pain affects you and interacts with other issues, and prevents you from doing normal things seem to be real keys to communicating what you need.

  7. Patrick said,

    20 September 2007 at 18:40

    A very nice post indeed.

    I wish I could Require some of my Doctors to read it.

    They seem to think that just because I have been given antidepressants and a BiPaP machine that I should, pretty much just as ~Jane said, be able to ‘shape up’ and get with the program.

    Those devices still don’t give me the boo-hoo facial expressions that make my physical doctor understand when I tell him things hurt that they really do HURT. (borrows your) Polysyllabic Expletive!

  8. Sharon said,

    20 September 2007 at 7:59

    Yes, it’s more important that everyone does what they can, by whatever method works for them.
    That was clear, informative, contained the most polite swearing I’ve ever seen AND made me look up a new word (finagle). Thanks!


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