Driving to Equity

Americans' drive to independence and freedom.

Public Transit — You don’t need a car!

Decades ago, there was a considerable push to steer people away from their private cars to public transit; secondarily, ride-sharing programs have been around at big employers for a long time. This is not a post about the stats on vehicles versus public transit. This post is about why accessible cars and vans are crucial to people with disabilities and why they can be difficult or impossible to obtain. I don’t think it is hyperbole to say that most Americans want their own vehicle—it represents so many things, including prosperity and freedom—besides the nuts and bolts practicality of having a car.

If you are lucky enough to live in a location where public transit is extensive and accessible, maybe you really don’t need a car. Some disabilities make standing or sitting outside to wait for public transit difficult or impossible. In my case, I can sit and wait as long as it isn’t too hot; with epidermolytic ichthyosis, I am vulnerable to overheating because I don’t sweat properly.

Recently, I was thinking about attending an event in Oakland, about 45 miles from my house. Just now, looking at Google Maps, it would take me about 2 hours to get there on public transit. (Ironically, because of the commuter traffic, it would take nearly as long by car.) The light rail near my home and BART (Bay Area Rapid Transit) are wheelchair accessible. The only access gamble in the trip would be whether or not the elevators at the BART stations are working. It is a given that they will smell like pee.

Coming home, when the event ends at 8 pm, would similarly take about 2 hours, but driving back would only take 50 minutes.

Since I have a wheelchair-accessible van, you might ask why I was even considering public transit. Well, driving has gotten more difficult of late. My shoulders and arms are intermittently painful because of arthritis and rotator cuff injuries. I can’t see as well at night; it turns out I have cataracts. Bonus disabilities!

Good Little Commuter

For eight years, I took the light rail and the commuter rail to my job at Big University. One way, my house is about 13 miles from my office.

If I drove, I could get to my office in about 35 minutes. If I took public transit, it would take about an hour, if all of the stars aligned. One of the things that people find hard to believe is that each train had a limit on the number of wheelchairs it would take on the train, regardless of the total number of cars on the train. At the time I was commuting, the limit was two. If the train came, and it already had two wheelchairs, they would leave you at the station for the next train.

This didn’t happen often, but it did happen several times a year. A few times, it happened to me late in the evening. There was supposed to be a Plan B—the commuter train was supposed to have a phone number it could call, and “they” would send a wheelchair-accessible van to take me home or to the station I had been trying to go to. This Plan B never worked. Either no one answered the phone number the manager had to call, or no one knew who could go get the van.

More than once, some mid-level manager would stand around on the platform with me, trying to figure out what to do.

Using a power wheelchair like I do means I cannot just hop in a cab. The wheelchair doesn’t fold up and weighs about 175 pounds. Similarly, I can’t call for a Lyft or an Uber. There are very few Yellow cabs that are vans with a wheelchair ramp, but it is entirely a crap shoot about one will be available unless you have arranged for it ahead of time. (By definition, you don’t know when the system will fail, so you haven’t arranged for a wheelchair cab ahead of time.)

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Plan for the worst hope for the best.

The other day, this post caught my attention.

Becoming Disabled: Driving

Like me, Jennifer loves to drive. When I was younger, I would drive from here to Portland, Oregon, in 12 hours—no problem—back and forth to San Diego multiple times, ditto Las Vegas.

Jennifer’s disability is making it harder for her to drive, and she can’t be sure ahead of time whether she will be able to drive on any given day, which makes planning hell.

I wanted to show everyone that there are alternatives to “regular” cars, but of course they are pricy.

This is just one example of a variety of adaptations that can be done to vans and cars.

Here, there are a couple that are noticeable immediately. This van has a fold-out ramp. I also have a fold-out ramp; if you lose power, it can be deployed manually. There are also in-floor ramps that roll out on a track. I thought that because the housing for the in-floor ramp is under the van, it would be more likely to get damaged during driving.

This person has a set-up where he can drive right from his wheelchair; currently, I transfer to the driver’s seat to drive. What he has—which might become a necessity for me and might work for Jennifer—is a joystick to drive. I have never used one of these set-ups, but you can see how his arms are supported and that he has complete control over the steering, braking, and acceleration.

I want to stress that none of this is a one-size-fits-all proposition. Good rehab engineers can figure it out if you are lucky enough to find a place to do a complete driving evaluation on how you could drive with suitable adaptations. This is only an example of the type of place I am talking about:

Driving Rehabilitation - Shepherd Center

Smart People Plan—Disabled Smart People Plan Even Farther Out.

I know that unless there is a series of miraculous events, I will become more disabled as I age. Fortunately, I have had a lot of practice in this area, and I know that the average aging boomer has not had that experience. Coupled with managing my parents’ care for the last few years of their lives, I know that magical thinking will not cut it as we age.

Here are a few things to think about:

• transportation

• personal care at home

• home accessibility (how many floors does your house have?)

• Can you get groceries delivered?

• What kinds of services are within a reasonable distance?

Fifteen years ago, I briefly explored starting a business that would basically teach people how to be disabled. I hoped that by promoting independence and interdependence, I could put a dent in the stigma attached to all things disability. Nobody wanted to talk about their inevitable aging. Nobody.

I remember talking to this woman in her 80s. She was lamenting the fact that it was getting harder and harder for her to make a fruit salad that she really liked. Long story short, it came down to that she could no longer stand at the counter and prepare the fruit.

“Do you have a kitchen table?” I said.

“Yes.”

“Well, I do a lot of food prep on my kitchen table since I can’t stand at the counter.” I said gently.

“Oh, I couldn’t do it that way.”

“Why?”

“I’ve never done it that way.”

Sit your ass down fer Christ's sake!