One of our greatest sources of joy and normalcy when my late husband, Jeff, was living with ALS was getting out and about in the community. The more ALS seemed intent on changing our life, the more determined Jeff became to find ways around it. I was his accomplice in our adventures, making sure they were safe, comfortable, and enriching.
One important way that we stayed connected with life was going out to dinner — whether to nice places or dive bars, we didn’t care. We just enjoyed being out, and we relied on his wheelchair and mobility van to make it possible.
Before we began using Jeff’s PEG tube for his meals, we frequented a set of favorite restaurants in and around our home in Annapolis. Annapolis is one of many places in Maryland renowned for excellent seafood, and we were both fans of local rockfish, blue crabs, and other delicacies. Eating well, while Jeff still could, was a familiar comfort during an otherwise scary and unfamiliar time.
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I remember one such evening, heading out to Jeff’s favorite local restaurant, a large, airy, nautical place accented with varnished wood and filled with sailing memorabilia and vintage photographs. We loved the menu at any time of day and enjoyed taking family and friends there when they visited us. The service was reliably good, and Jeff found that there was plenty of room to maneuver his wheelchair, which was always a consideration.
The restaurant had a small parking lot, though, and we discovered that routinely, the two designated handicapped parking spots were occupied by cars not bearing handicapped tags or hanging placards. The first time this happened, we found alternate parking blocks away, which was complicated as Jeff’s 425-pound wheelchair was challenging to drive on older, brick streets. The second time, and the third, we regrettably changed our restaurant choice after finding the spots occupied. After that, we just stopped going altogether.
This made me sad, and it also made me reflect: If people knew that using a handicapped parking space without need, simply for convenience’s sake, would keep someone who needed it from enjoying a dinner out or a visit to the mall, or from using an airport check-in counter, would they still use it?
Before ALS impacted our family, I’d been a passenger in cars plenty of times when the driver pulled into a handicapped parking spot, reasoning that it was just for a quick errand or that we’d “only be a minute.” I never objected; it felt petty to do so. Parking there seemed like a relatively small thing, and it was hard to argue when the stop at hand was for a short period of time.
Now I know different.
Going on an excursion while using a wheelchair was, in our case, a significant undertaking, one for which we could easily spend more than an hour preparing. It was vitally important for Jeff to get out and enjoy life while he was living with ALS, and we did a good job of making that happen. But it was crushing when we’d counted on access and found it unavailable. It happened more times than I care to count, and while we could usually redirect and change our plans, I know that for Jeff, doing so further drove home the reality of his disease and resulting disability. It was yet another minor loss in a sea of many, both large and small.
It’s important for me to note here that there are hidden or “invisible” disabilities, and many people legitimately availing themselves of handicapped parking and access who do not “appear” to need it. That, I know, is none of my business — and I’m grateful that the access exists for all who require it. Usually those cars are indicated with placards or tags. I’m speaking instead of those of us who are able-bodied and avail ourselves of better access for convenience.
Saving handicapped access — be it parking spots, pre-boarding on airplanes, or shorter spots in lines — for our neighbors and community members who need it is important. It can genuinely have a major impact on someone’s day, marking the difference between whether they’re able to participate in a cherished activity or not.
Even today, more than three years after Jeff’s death, I find myself looking for curb cuts to check whether a street or a sidewalk is accessible. I notice ramps, elevators, and other features that make life doable for those living with disabilities, whether seen or unseen.
I remind myself often to hold those spaces for people who truly need them, and I won’t use it until such a time that I need it — not even for a moment.
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