Toward a More Accessible Future

Gloved hand with scalpelI’ve long lived with a minor disability that at times makes it difficult for me to function as others do. I’m referring to the palsy I mentioned in a recent article. I refer to it as “palsy” in the dictionary sense of the term; I exhibit tremors nearly constantly, though I’ve no idea where these shakes comes from. Perhaps I’m simply a tremendously nervous person. I’ve never even referred to it as a disability until now, but it truly has disrupted my life in various ways. Try to convince a job interviewer that you’re a good salesman as you shake and twitch like a chihuahua.

Anyway, the palsy probably shouldn’t bother me as much as it does; it isn’t a crippling palsy, disabling enough to render me incapable of using my hands for most tasks. I’d never make it as a surgeon, however, and I’d be a sorry competitor in a game of Operation. But some days it’s hardly even noticeable (to others). Unfortunately, most days it is quite noticeable, enough for people to draw conclusions about me based on the way my hands shake or my body twitches. And sometimes — often enough for me to mention — I’m treated quite disrespectfully, just because I shake a little (or a lot, depending on how my body decides to behave).

Most people I’ve encountered in life are kind, but there are a few sorry individuals who find it entertaining to make a spectacle of themselves at my expense, and unfortunately I’m not as thick-skinned as those who are better able to deflect the misguided judgments of others. It’s one thing when someone notices a shakiness to your movements and remarks upon it with sincere concern; it’s quite another when they assume things about you due to something you have no control over. Last summer, for example, while lounging out by the pool area of my apartment complex, a young woman rather rudely accused me of being on drugs. (It turned out she had been high on hallucinogens all afternoon.)

But my palsy — or shakiness, or whatever we want to call it — isn’t nearly as disabling as another condition I’m afflicted by (though I wouldn’t be surprised if it turns out the two conditions are related). I live with a more disabling condition which renders me unable to get out of bed at times, sometimes for days on end. Fortunately I’m able to access the Internet during those times; otherwise, my only interaction with the outside world would be through the person I live with — and as much as I love and enjoy the company of the person I live with, cabin fever still sets in from time to time. The Internet has been a lifesaver in countless ways for people living with a disability (or disabilities), enabling those of us who are either temporarily or permanently housebound to communicate with the outside world.

Still, as enabling as the Internet is, I wish it was more accessible, and accessible to more people. Many people have envisioned a future in which the Web is connected directly to the brain; the idea has been circulating for decades and popular culture now seems to be predicting the notion as an inevitable step in the evolution of technology. Google’s Project Glass is a far cry from a true brain-to-computer interface (BCI) but brings us a small step closer to that fantasy, potentially enabling those without the use of their limbs to interact with the Internet. Yet the technology still doesn’t offer much comfort to a person like my mother, crippled by dementia and unable to use her voice to command such a device. I applaud efforts like Google’s, as they push us toward a more accessible future, but I live for the day that someone in my mom’s situation will be able to communicate and interact with others through actions initiated by direct electrical contact with the brain.

That day may never come — at least, not in the fully immersive way many of us may be expecting (i.e., The Matrix). The BCI technologies that are emerging allow our brains to drive certain mechanical actions, such as using brainwaves to drive a car or to control robots.

Some BCI systems even claim to communicate “thoughts” from one brain to another, albeit quite rudimentarily, and many more BCIs are in the works. We can imagine all sorts of ways our brains might be able to interface with the world around us: I’ve long fantasized about a device that would enable me to write while I’m sleeping; Chris Pirillo has wished his dreams were available as video podcasts. I can only imagine some type of brain-computer interface making these desires possible.

Yet as powerful a driver of innovation imagination is, it doesn’t always lead to the results we’d hoped for. Where is free energy? Does anyone in their right mind truly believe we’ll be able to teleport our bodies from one location to another — and maintain, with absolute integrity, our initial composition(s)? Even ideas that seem far less outlandish will probably never be realized in nearly the way we’d imagined, as fellow LockerGnome contributor Matt Ryan reminded us the other day in his article about flying cars. The PAL-V is a cute little helicopter I’d certainly enjoying putting around in, but it’s not the flying DeLorean we’ve been fantasizing about.

Yet I remain optimistic. Perhaps we won’t see The Jetsons-like flying vehicles in our lifetimes, nor head-plugs that would so completely trick our brains into believing we exist in a fantasy world that we’d forget which world was “real” — but those fantasies don’t matter for practical purposes. For those of us living in the present era, what is more important is for even the most rudimentary access to life’s transactions be made available to everyone. It is not only access to the Internet that I am concerned with (though that is vital in this day and age); it’s the “simple” things as well, like being able to deposit a check at your local financial institution. Technology seems to be improving access at an acceptable rate; the problem is, how long will it take for enough people to adjust their attitudes toward the disabled? Assistive technologies do not always work as well as the people making the technologies desire them to; they only work as well as the people — both disabled and abled — utilize them.

Image above shared by johnny_automatic at the Open Clip Art Library

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  • sragan55

    I’ve had the same tremor problem that you describe since I was in my teens, almost 50 years now. You are quite correct that the majority of people are kind and considerate even when they make a comment. But, it is those few people who seem to deliberately choose the most inopportune and embarrassing times, like in a check-out line, when the most people can hear the callous and rude comments made with a smirk. Even after all this time I cringe with embarrassment. So, I don’t go out much, and the internet has become my haven. I don’t know if you’ve heard of a procedure called DBS(deep brain stimulation). It’s been used quite effectively with total tremor relief, on people with Parkinsons disease and other “palsys” causing tremors. I personally am unable to have this procedure done, but hopefully it might be a way for you to improve your quality of life. Good luck Chris, and thank you for a wonderful article.

  • Matthew Gill

    Wow, what an excellent point you make! One I must admit I share not just for it’s inherent value but also because I share similar circumstances. I have suffered from tremors from birth as well, enough so that in elementary school the teacher opted to skip me when it came time to learn cursive writing(instead using me as a cursive note mule between herself and other teachers). To this day I struggle with my own shakiness, even on a good day. But I have also come to look upon the internet as a vital lifeline – as a sufferer of Narcolepsy/Cataplexy.  If it wasn’t for things like social media, GoogleVoice and the like I would have almost no contact with the outside world. And let’s not even get into the worry my wife and family has when they leave me at home for extended periods. If I am having trouble I am generally too sleepy or paralyzed to function for most things but with the internet I can still keep in contact, occupy my mind, or even get ahold of people if I need help.

    I don’t risk driving anymore so I rarely see anyone and have very few who visit. Without the internet I would probably be a virtual hermit, which only adds to the depression.

  • Ellen Marcus

    A very well written article!  I recently heard a news clip about cars that will drive themselves.  The test studies for them require the vehicle to pass the driver’s test without a driver.  That just blows my mind.

    Also, I think that our education system (especially when the kids get to high school) could benefit from adding a basic nursing class about common medical conditions.  A semester on Cerebral Palsy, Parkinson’s, Narcolepsy, MS, Autism, Downs Syndrome, etc. could be beneficial.  Without revealing my age, I don’t remember if we were taught this because HS was so long ago for me, but, if kids aren’t being taught about this stuff in today’s school system, it would probably be a good addition to the curriculum.

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