What the what?

In my week of writing about criticism, I took what for some might have seemed like a detour yesterday to write about voting and the disenfranchisement of my late husband by a system that disabled him.

Let me explain.

Paul had Type IV Multiple Sclerosis, a particularly pernicious form of the disease that was progressive and non-remitting.

Demyelinisation

Demyelinisation

The disease (an autoimmune disorder that led to the erosion of the myelin sheath on the nerve cells in the brain and spinal cord) led to a series of impairments (tremors, weakness, loss of sensation, changes in brain functioning, altered speech, and atrophy of muscles). The disease did not disable him. Paul remained able to get his needs met until very near his last breath. He had even prepared for that moment with specific instructions about resuscitation.

Paul was not disabled by MS. He was impaired by it. He was disabled by the context in which we live. He was disabled by the Village Clerk who would not requisition a work order to make the polling station accessible. He was disabled by the Village Manager who would not alter the work day on the two Fridays used for early voting for each election. He was disabled by the lack of a bridge that allowed him to see the lake he so loved. He was disabled by impatient drivers and the lack of crosswalks.

One day after a particularly difficult transfer from his wheelchair into our car, Paul silently cried in the car. We had tried to vote, but could not. While I was folding his chair to load it into the trunk, a friend approached and asked how we were doing. I was honest. He asked if there was anything he could do. I responded that a property he owned was hard to access because the curb cut, while it met code, was way too far away to help us. If it were raining, we’d get soaked. One week later, there was a new curb cut right at the entrance.

OLYMPUS DIGITAL CAMERAAnother evening we drove around for 30 minutes looking for a parking place to access our go-to restaurant. All of the marked spaces in front were taken by late-model high-status cars with a ten spot likely given to the valet to keep an eye on it. We could not double park to unload because even the curb cut there was blocked by a vehicle. I called the restaurant in frustration. A manager asked if we could give him 20 minutes. I parked far away and waited. Twenty minutes later I drove up and we were greeted by the manager. He had the cars towed away. Dinner was comped, too.

I write about these incidents as a way to show what criticism can look like. In these examples I illustrate another way to assess disability, evaluate environments, censure certain behaviors, and applaud others. Similarly, when I wrote about voting, I provided an insider view of what voter ID, early voting, and obstacles in the built environment can mean for someone with physical impairments, someone who in the process lost not only his vote, but a bit of his joy. In this, too, there is criticism.

In the election results last night, winners and losers were announced. My own favorite candidates did not fare well. They often don’t. These results don’t mean that we should gloat or pack up our things. They mean that in our democracy we must remain critical in our appraisal of the day to day performance of our elected officials.

We govern.

One thought on “What the what?

  1. Thanks for the way you speak of the disablities put up by others. “He was disabled by…” It’s very true. After numerous foot surgeries, my dad was only allowed to walk one mile a day. It doesn’t take long to do that if there’s no place to park near an entrance.

    Like

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