I tend to tense up when I hear that question. What I frequently want to say is, ‘I am not doing well at all. I’m exhausted, I’m stressed, there’s so much drama in my life. My legs hurt and and I really need to sit down. I’m just struggling.’ But that’s not what many people want to hear. In fact, lots of people will stop in their tracks when you give them an answer other than, say, ‘fine thanks’ or ’well and you?’
Sometimes people are asking as they genuinely care how one is. Frequently, however, enquiring after someone is merely a social nicety. And you can’t always tell the difference! That something so nice and positive and supportive has become a formality is pretty sad. And there are added layers of meaning for disabled people.
This question, concerned with health as it is, can be a point of tension for PWD. Because we’re often not fine, and that’s generally not something abled people want to hear about. Not that many people want to know what’s really going on in other people’s lives anyway, all that is deep and dark and personal, but this is particularly true for disability. Disability is held to be unpleasant, not something you want to hear about, and also it’s considered kinder to avoid the subject for fear of distressing the poor disabled person.
I was having a chat about this recently with the lovely Dorian of Dorianisms. He pointed out that ‘how are you’ as polite and meaningless is particularly baffling to his non-neurotypical self. ‘I respect the value of polite, ritualized words. But that one in particular is odd, b/c it takes the same form as an honest inquiry after well-being could. And I don’t know how to tell the difference.’ It’s a matter of having to have learned this social script and then finding out that it doesn’t always mean what one has been told. That’s confusing, and it’s more unnecessary work the neurotypical world requires of non-neurotypical people.
I’m not saying that being asked how one is can’t be a nice experience, or be conducted with nice intent. I can really appreciate my friends asking about what’s going on for me, it’s lovely to be thought of. It’s just that there are so many things going on here.
A couple of years ago, when it got too much, I was in the habit of just talking at people who asked me how I was. I just threw lots of words at them so that they wouldn’t realise I wasn’t answering their question. At present, a favourite response of mine to ‘how are you?’ is ‘because I was born, and I continue to be alive. What kind of a question is that?’ Yes, I know, I have an odd sense of humor. Sometimes when I’m feeling poorly I answer properly, but then I get the looks of disconnection or pity; I’m not sure which is worse. And if I respond with a chirpy ‘fine and you?’ it sounds odd if my health issues come up later in the conversation. I worry that the incongruence might make some think I’m faking, and there are enough people who think that of chronically ill people already! I don’t like to lie, and I really don’t like being expected to lie in order to keep things smooth and social. Alternatively, I frequently wonder if some people aren’t asking me out of concern or even habit, but for gossip fodder. I don’t like my personal experiences to be open to that sort of thing. And sometimes I just don’t want to talk about how I am. I have so much to deal with that I’d rather not think about it while I’m trying to be social, even as ‘how I am’ is making me struggle to be social.
I was in the habit some months ago of not asking PWD ‘how are you’ lest they think I was being intrusive about their health, and now I am thinking of moving back to that. In any case, I am trying to remember to be conscious about how I say it: to mean it when I do, using appropriate phrasing for that particular person, and to refrain where it’s not welcome.
The prevalence of this social custom is simply another nod to abled preferences at the expense of our own. I’ve got a lot more reason to keep my mouth shut about my private medical concerns than an abled person who has just had the flu. If we don’t participate satisfactorily in this seemingly (to abled people!) perfectly innocent and polite cultural norm, it’s another manifestation of our being difficult; we’re bad cripples. All in all, this trifling pleasantry can be pretty loaded. And we’re often expected to share, and only the right about, on abled terms.