Q. Lately I am less willing to go to friends’ and new acquaintances’ homes, mainly because so many of their bathrooms are not accessible or the rooms are too crowded with furniture and other obstacles. I feel uncomfortable when I’m visiting because of being limited in my choices of where I can and can’t go in my wheelchair. In my younger days I would go visit anyway, probably because I was more adventurous and had not yet grown weary of the continuous hassle of inaccessibility. Now, after decades of running into the same problems repeatedly, it seems I usually decline when invited or make up some excuse, like I’m too busy or not feeling well or need to go to bed early. Afterwards, though, I don’t seem to be able to avoid feeling bitter and resentful about my friends having wheelchair-unfriendly homes. But instead of speaking up, I swallow my feelings.
Recently a situation came up that brought the issue to a head.
A longtime friend invited me to his home to celebrate his 25th wedding anniversary. Several couples had been invited, and a dinner was to be held in their backyard area with one long table to set out on the lawn, as usual. They prefer the same setup for any special occasion, and their circle of friends has grown to expect it. I knew the table would be too low for me to roll under, as always, which would mean an awkward eating situation with me spilling food in my lap. Plus the thick grass makes rolling in my manual wheelchair almost impossible. If I had to cath, I would have to make do with an empty bottle in some out of the way corner of the yard with no running water. Worst of all, if I needed to use a bathroom, I would have to be hauled up a difficult staircase in my wheelchair by two people, a risk I am no longer willing to take.
Even though I had been a groomsman in their wedding and wanted to be there for them, I could not honestly bring myself to RSVP because I knew it would all add up to one more long uncomfortable evening. When my friend called and asked if I would be able to make it, I said I was sorry, but the whole setup just isn’t comfortable for me any more — it’s harder and harder to have a good time. I should have told him I’m no longer willing to risk the humiliation of having another bowel accident at a social gathering, but I left it at that. My friend called back a couple of days later and offered to set up a card table that would sit higher at the end of the long table. I thanked him but declined. The flimsy card table never has worked that well and I had even inadvertently knocked it over a few times. I just couldn’t do it one more time.
Afterwards I felt guilty declining their invitation — until my girlfriend reminded me they could have easily offered to move the long table to the nearby concrete deck or inside, where the legs could have been propped up a couple of inches, or they could have offered to move the celebration to a different location, like an accessible restaurant or someone else’s home.
It has been two weeks and I haven’t heard from them, but it seems we crossed an invisible line and there is no going back. Did I do the right thing, or should I have swallowed my pride and gone to their celebration feeling like a second-hand friend?
A. Welcome to the land of private ownership, where homes are regarded as personal castles and no law can change the right of a homeowner to ignore or deliberately choose not to follow principles of universal design. We are stuck with it, unfortunately, and how our friends respond to our needs — or don’t — too often threatens the limits of our friendships, both in how far they are willing to go to accommodate us, or how much or for how long we are able to tolerate feeling left out or slighted.
At this point the real issue is how much you value their friendship and what you are willing to do about it. It seems your true feelings have been building up over time, and you have kept them mostly hidden. If you want the friendship to continue, reach out to them soon and explain fully how difficult it has been for you for some time now, and that it isn’t getting any easier. They may not have realized just how inconvenienced you have felt, how aging has made your disability harder to deal with, and how difficult it has been to articulate how something as common as an inaccessible bathroom can lead to a kind of humiliation that few people truly understand.
If you want to take the high road, you might offer to treat them to a special dinner at a nice accessible restaurant in honor of their belated anniversary. Or you could float your girlfriend’s suggestion to relocate the table to their concrete deck for a shorter get-together — but only if you are willing to accept the lack of a bathroom. You might rather go “all out” and help them research and develop other restaurant options for future gatherings where a choice of venues could appeal to their other friends as well. You do the work; they make the choice. In this way, you will be demonstrating your willingness to keep a valued friendship intact as well as establish your need for independence and autonomy.
But what if they are unwilling to take you up on your offer because they prefer to eat in the comfort of their own surroundings? That would leave you with a very difficult choice. But before closing the door to future dinners, would you be willing to host them and their friends in the comfort of your own home? If so, then offer. If they still prefer to always play the role of the default dinner party host in their inaccessible home, then perhaps the time has come to let them go their own way.
We don’t like to admit it, but friendships change over time, and it isn’t unusual for good friends to gradually fade out of each others’ lives. Whatever you do, it is always best to be honest with each other, no matter how your differences may have altered things. In this way, a difficult decision can function as a maturing experience for both of you, something of value. Also, remember that it is still possible to maintain friendships that don’t always center exclusively around social gatherings.
Of course, expecting your friends to make any major architectural change in their home to create accessibility for you alone would be asking too much. Their castle will always be their castle, but it doesn’t have to be the only choice in the kingdom. Perhaps over time, if you stay in contact, they will consider in their advancing age that making architectural changes is the smart thing to do sooner rather than later — for everyone’s sake.
Send your ethical dilemmas to Tim Gilmer at tgilmer@unitedspinal.org.
