Tuesday, June 19, 2018

How are you doing?

The title question is not to be confused with the more common greeting “how are you?” Under no circumstances should you respond to "how are you?" as if the questioner gives a damn about your personal life. Acceptable responses are:

  • “Good.”
  • “Good, how are you?”
  • “Fine, thank you.”
  • or similar drivel
By adding only one word — “How are you doing?” — the innocuous greeting becomes a loaded question, especially when directed at someone with MS or an equally challenging condition. When I am asked, “How are you doing?” I have to make a decision. Do I undertake the hard work of telling the truth, or do I give a canned response? It depends.

I believe most people who ask me this question do so with sincerity. They wonder if the disease is progressing. They wonder if I’m coping well. They wonder if I’ve found an effective treatment. And I believe most people who ask me this question do so with compassion. They care about me, and they hope for good news.

Nevertheless, I reserve the right to give a canned answer such as “good” or “hanging in there” or “about the same.” I may not have the emotional energy to go any further at that moment. Just because someone invites me to delve into the gory details does not mean I am obligated to do so.

Still, if you are sincere and compassionate, here’s some advice on asking somebody like me “How are you doing?”
  • Ask me "How are you doing?" if it's been a long time since you last asked me.
  • Ask me if we are close friends or relatives.
  • Ask me if you are similarly afflicted.
  • Ask me if I am the one to raise the issue of my health (or your health for that matter).
  • Ask me in a more specific manner if you can. For example, if you know that I went to the cancer center for an infusion last week, instead of asking me “how are you doing?” ask me “how did that procedure go last week?” The more specific questions require less emotional energy to answer than the more nebulous ones.
  • Ask me later in the conversation, after the excitement of reconnecting with you has begun to wane. Let’s talk about the good stuff first.
  • Ask me at a bar, over drinks.
Also keep in mind. When you ask someone with a progressive disease “How are you doing?” you are asking a lot. Are you ready for the answer?

Wednesday, June 6, 2018

Playing the Disability Card

“Playing the disability card,” is a phrase that carries a vaguely negative connotation—like I’m getting away with something. Let’s examine that.

There’s not just one disability card. There’s an entire deck of them.

The Public Access Disability Card

A couple of years ago I came up with an idea to improve wheelchair access to the bridge between South Portland, where I live, and Portland, across the Fore River. After two years of negotiating, designing, and construction, there is now an accessible pathway. I wrote about it here.

When I play the public access disability card, I certainly don’t feel like I’m getting away with something.

The Personal Safety Disability Card

We had a pitched battle in my neighborhood about parking and traffic patterns. The issues were complicated and contentious. I wrote an email to all the city counselors and the city manager, which contained this statement:
With my proposed traffic pattern, the neighborhood is much safer for me to negotiate in my wheelchair. With the alternative traffic pattern, I’ll feel like I’m risking my life every time I cross the street.
Even though I played the disability card, I lost the argument. It turns out I may have overplayed my hand. I haven’t been killed on the street, and I haven’t even had a close call.

The Convenient Excuse Disability Card

My father didn’t like to go out and socialize. My mother did. So, when they had plans, and the weather forecast called for rain, he would say something like, “Looks like we won’t be able to go out after all. Can’t get your wheelchair wet.” In fact, they could get her wheelchair wet.

Kim and I don’t play these games with one another, but we’re not above using a phrase like, “We would love to join you, but Mitch is just a little tired today.” Everybody knows I have a serious disease, and invoking said disease gives us an instant, unarguable excuse when we would rather not participate in an activity.

This disability card falls in the category of “we deserve it.” It’s a little white lie that we’ve earned the right to employ on occasion.

Note to my friends: you can’t possibly know when I’m playing this card versus when I really am too tired to go out, so you may as well give me the benefit of the doubt.

The Handicapped Parking Disability Card

To be clear, Kim would never park in a handicapped spot without me. But even with me in tow, there is a gray area. Suppose Kim and I are driving by the grocery store, and she says, “Oh, we need milk. Do you want to come in with me or wait in the van?”

I might respond coyly, “I can’t decide.” This is code for, I don’t plan on going in, but because there is technically a chance that I will change my mind, or that some sort of emergency will occur and I will need to escape the van, this qualifies you to take one of those “van only” handicapped spots near the front.

This disability card is pushing ethical limits. On the one hand, I’m technically correct to keep all my options open—to preserve the ability for me to exit the van if I want to. On the other hand, what if I’m taking the last handicapped spot, and this decision pushes another handicapped person far out into the parking lot? Then, have I overstepped my bounds? Have I played the disability card out of turn? In this instance, I feel a little bit like I’m getting away with something.

Those Times When I Don’t Play the Disability Card

I often refrain from playing the card. I belong to a neighborhood association that decided to hold a celebration at an old, inaccessible tavern. I didn’t argue against this choice of venue. In fact, I helped with the planning of the event and kicked in 20 bucks toward the food spread, even though I couldn’t attend. The event wasn’t only about having the neighborhood get together for bonding, but it was about celebrating this ancient landmark, an establishment that would be prohibitively expensive to make accessible. I’m cool with that — just as long as venues like this are the exception rather than the rule.

The disability card is such a powerful tool. I want to use it appropriately. How do you decide when to play the disability card?