To his surprise, my friend Neil was recently invited to a former neighbor’s housewarming party at her new home. Neil’s vision, never great, has deteriorated in recent years. He took a taxi there and was greeted at the door by the host, his former neighbor. She showed him to the bar, where he gave the man his order. The bartender turned out to be the former neighbor’s boyfriend. Then the host ushered Neil (not his real name) to a table where he found himself sitting opposite one of her sisters. The sister helped him select items from the food table. Then a second sister sat down at his right. Another of Neil’s disabilities is total loss of hearing on that side, and so he turned his chair in order to hear them both. He learned that they were from other parts of the country and had traveled there for the event. He liked them.
After a while, someone announced it was time to photograph the host and her family. Neil took the opportunity to leave. A man with the same name as the boyfriend insisted on driving him home. Neil realized it wasn’t the boyfriend only when the actual boyfriend with the same name said he would join them for the ride. Neil thought it was too much; they were being overly considerate.
After coaxing him through his story, I asked why he’d left early, considering how much he had enjoyed talking to the sisters.
“They were being really good to me,” he said. “I was taking too much of their time.”
In other words, he felt he’d been a burden. The grim term, “self-loathing,” came into my mind, an accusation some disabled people throw at other disabled people.
Neil is a charming man, and I’ve observed how warmly men and women respond to him, whether they’ve known him for minutes or years. I’d be surprised if the host and her two sisters weren’t sorry to see him go.
However, he was self-conscious about being shown around the house and having someone help him choose what he felt like eating. He assumed the two sisters wouldn’t have given him the same attention had he not needed their help. Perhaps he was right. Perhaps not.
Typically, guests are welcomed, then left to mix with the other guests and select their drinks and food as they feel like. That isn’t realistic for someone in my friend Neil’s predicament, as it isn’t in mine. As a practical matter, the host and one or two guests often take on a disproportionate effort to make a disabled person feel at home because most people at a party won’t extend the same effort. Some will be too shy or uncertain how they should act. Others will recoil from contact with a disabled person, as if disability were contagious. At the same time, the disabled person wants people to talk to him only because they feel like it, not out of a sense of obligation.
Why was Neil invited to this party? I didn’t remember him having spoken about his former neighbor before, and so I asked him how well he’d known her. He lives in an apartment building with no on-site superintendent or caretaker. One day he encountered a woman wandering the halls because she’d mislaid her keys and couldn’t get into her apartment. This was his former neighbor, a woman he hadn’t spoken to before. Neil invited her into his apartment so she could call a relative who had a copy of her key, and then offered to make tea. He entertained her for the hour it took for the relative to arrive. After that, they only ever greeted each other in the hall.
Clearly, there was more than obligation behind her invitation to the party. At a minimum, it was gratitude. Perhaps it was a sign she would have liked to think of Neil as a friend and thought the party might help it come about. If so, Neil may have missed the chance for a new friendship through his self-deprecating early exit. While the relationship of helper and helped can reduce a disabled person in other people’s minds, it can also lead to the perception of a nondisabled person giving help as merely nice.
I mentioned at the outset that Neil’s vision has only recently deteriorated to the point where he needs the kind of assistance he got at the party. From what I can tell, he hasn’t yet come to terms with the transformation in his independence. We are all dependent: a driver on car manufacturers and road builders, a homemaker on farmers and cleaning products, a student on the wisdom of previous generations and librarians, among many others. Disabled people’s dependence takes a form that is more obvious and can require more direct intervention. But for disabled and nondisabled people alike, dependency is a scale, not an all-or-nothing proposition. If anything, disability can point to the true nature of independence.
Advice-givers would have lots of wisdom to pass along to all concerned. Neil might be told he should cultivate greater self-esteem and be more assertive, while a host might be told not to be overly solicitous because it can seem patronizing.
Such nuggets of advice amount to rules of how disabled people should behave to make nondisabled people comfortable, and then how nondisabled people should behave around disabled people to make them feel truly welcome. At best, however, advice of this kind is a set of tentative guidelines. My purpose in recounting Neil’s experience isn’t to offer a blueprint for how all involved should act. Nor am I offering that most tedious of bromides, “It’s O.K”: It’s O.K. to be uncomfortable, O.K. to feel like a failure. No, it isn’t. It’s horrible.
Neil’s unexceptional story gave me an objective insight into the quandaries faced by disabled people in mainstream society and the nondisabled people who welcome them into their lives. I say “objective” because I have often been in Neil’s situation and felt something similar. Then I think of the people who came up and spoke to me at parties over the years. Naturally, I remember most clearly and fondly the ones who not only extended themselves, but kept in touch and became friends.
Note: I’ve used the word “nondisabled” even though it could be argued that we’re all disabled in one way or another. However, the alternatives, such as “able-bodied,” seem to me even more inaccurate and euphemistic.