Tuesday, January 24, 2017

A Great Time to Be Disabled?

I don’t know if there’s ever a great time to be disabled, but there has never been a better time than now. Here are a few reasons:

Home Automation

Lights, door locks, window shades, entertainment systems, security systems, heating and air conditioning—all these items and more can now be automated in your home. Just a few years ago, this was the stuff of science fiction or could only be found in homes of the super-rich. Today, it’s within reach of most folks, at least in small doses. I wrote about my home automation experiences here.

The Big Four: Microsoft, Apple, Google, Amazon

Microsoft Windows is the platform I spend the majority of my time on. Windows has some accessibility features, but it’s mostly third-party programs, like Dragon NaturallySpeaking, that make my computer friendlier for me. Still, Microsoft gets credit for building the platform.

The Apple iPhones and iPads have decent adaptive features. Siri is helpful for a variety of tasks, but falls short of total voice control. Apple is also making a foray into the home automation business.

Amazon makes this list for two reasons. First, they sell so much disability-related equipment on their site at relatively low costs. Whenever I learn that I can benefit from a new gizmo, I start at Amazon.com. Second, the Amazon Echo is an outstanding product, not only for its portal to home automation, but for the many other features it brings to the table.

Google Home is the me-too version of Amazon Echo. Long-term, I expect great things from Google Home, but Echo has a huge head start. Google and Siri are currently fighting it out for best natural language platform. But where Google really shines for disabled people is with their Voice Access app. I have that app on my Pixel phone, and it allows me to control every aspect of the phone with my voice.

Power Wheelchairs

Rule of thumb is that every five years you get a new power wheelchair. A lot happens in the world of power wheelchairs in that period of time. When I looked at the latest chairs last fall, I was blown away. I’m now in possession of a new Permobil F5 VS, which I’ll be writing about more here very soon. DEKA is partnering with Toyota to produce the next generation of iBot, too.

My mother passed away in 2008, and her power chair was an antique compared to my new one.

Mind Control

There's a clinical trial underway by a company called BrainGate. They are developing a neural interface so that patients can control the cursor on a computer monitor or control other assistive devices with their minds.

You can implant electrodes in my brain and have wires coming out of my skull? Sign me up. (I tried to enroll in the study but they're not accepting people with MS.)

In some number of years—I don’t know if it will be two or twenty-five years—I expect that this sort of technology will become available to most paralyzed individuals.

Exoskeletons

Power wheelchairs are nice, but I would prefer to walk. Several organizations are developing motorized exoskeletons that could make this dream possible. I saw a presentation of one of these devices in Boston last year. It seems that it’s easier to develop an exoskeleton if the user can assist with some upper body function. That isn’t stopping a few researchers from trying to develop exoskeletons for quadriplegics too. In fact, one manufacturer is trying to integrate the type of mind control I mentioned above.

Public Access

As the Americans with Disabilities Act matures, more and more public spaces are becoming accessible to people with disabilities. There’s still a lot of work to do, but progress is steady.

Challenges 
  •  Funding – all these items cost money, and those of us with some financial resources will fare better than those without. Home automation costs money. A 20% deductible on a $56,000 wheelchair is expensive. I could go on. My point is that we need more public assistance or more insurance company participation for devices that enhance the lives of disabled people. 
  • The Downside of Regulation – because the free market can’t provide disabled people with what they need, government must intervene in two ways: funding, as I mentioned in the previous item, and regulation, such as with the ADA. Whenever regulation is introduced, however, clever but unscrupulous people take advantage. For example, in this 60 Minutes story, lawyers are suing small businesses for noncompliance, and pocketing the lawsuit money with no regard to improving accessibility, or even providing their disabled clients with a fair share of the settlements. Whenever regulations are enacted, it takes diligence to keep up with the cheaters.
Bottom Line

There’s never been a better time to be disabled, and I hope to be able to say that every year until I die. I’m not worried about technology—that train has left the station and can't be stopped. I am concerned about access to that technology for the vast majority of disabled people who are not wealthy. This will require diligence on the part of disability advocates, and a mixture of creativity and compassion on the part of government.

4 comments:

  1. Dependence on compassion from the current government is, I think, at best a risky proposition. The Trump administration shows no indication of compassion towards anyone, and the Republican's drive to do away with the ACA leads to an uncertain future, at best. All this wonderful technology will likely remain well out of the reach of most people. I worry about access to the basics, much less an exoskeleton.

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    1. Stephen, yes, lots of uncertainty. I'm hopeful, however, that Susan Collin's recommendation for healthcare gets adopted, in which case "repeal and replace" would amount to "tweak and change the name."

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  2. In a time of dismay, I am reminding myself that negativity is the dubious luxury of so-called normal people. I find that staying positive is imperative for me, at least most of my time. It is really what makes me feel healthy, despite my diagnosis. So Mitch, this is why I follow you. You can see the bright spots, not to mention your excellent writing skills, your lovely wife, and your good looks!

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    1. Daphne, I feel it's time for me to come clean. That's not really me and all the pictures. I hire a body double to make me look at least normal. The real me? Think the monster in Beauty and the Beast.

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