It’s a Wednesday morning, and I sit with my 2 ½-year-old son Teddy at the doctor’s office because he suffers from a stubborn cold.
Like every parent who has to juggle a sick child on top of everything else, I’m somewhat stressed and tired, and so the paediatrician, who we see for the first time because our usual doctor is on leave, catches me out of the blue with one of her first questions: ‘And why are you sitting in a wheelchair?’ she asks, right after I tell her about Teddy’s symptoms. I am stunned that she would ask me such a personal question, but I also just want to get on with things and do not have the energy to challenge her. I answer politely and tell her about my disability, even though I am pretty sure that there is no medical connection between me being born with Spina Bifida and Teddy’s runny nose.
She continues to ask me other intrusive questions (how did I manage to carry him around as a baby? Can I push him around in a pram? Do I work? Do I find parenting difficult as a disabled person?), none of which have anything to do with the problem at hand (my son’s cold), and I leave the practice feeling frustrated and annoyed, mostly at myself for not setting clear boundaries and demanding that she focuses her attention on my son, not on me and my disability.
Unfortunately, this is far from the first time that a virtual stranger felt they had the right to know about my medical diagnosis. When I used to go clubbing in my 20s, drunk people were approaching me routinely just to ask ‘what happened’ to me. Luckily, the tipsy clubbers were usually easy distracted I could just step away from them, something that I wasn’t able to do with my son’s doctor.
When I voice my annoyance with her nosiness later on on Facebook, my friend Rosa hits the nail on the head as to why these questions about my diagnosis are so tiresome: ‘I just can‘t see how anyone could look at you and Teddy and decide that was what they wanted to know (rather than, for example, where you got your awesome jackets)!’ This is exactly the reason why I don’t like being asked about my disability by strangers: Not because it is a hurtful or traumatic topic for me (it totally isn’t), but because I find it offensive that this should be the most interesting thing about me.
The question is particularly ridiculous because with many diagnoses, the outcome and effect on the individual vary greatly: Some people with Spina Bifida can walk unaided, some use crutches, some use wheelchairs, and some have multiple disabilities. Take into account all the other differences between people, and my everyday reality might have very little in common with someone else’s who was also born with Spina Bifida.
The question also reduces me to my diagnosis: Of course it is a part of me, but it says very little about me as a human being. I do not mind discussing the medical details of my disability with friends who are interested in that part of my life, but I am confused and offended if someone should think that this is all there is to know about me.
My disability affects many areas in my life and has, without a doubt, shaped who I am – as a mother, as a teacher, as a writer, as a wife – in complex ways. A two-word diagnosis could never sum all of this up.
In the case of the paediatrician, I came to her as a parent of a sick child, but was not treated as such, and instead I was treated as a medical case, a textbook come alive. I am absolutely fine with discussing the realities of my disability (medical and otherwise) with others, but what I ask is to be recognised as a full human first, not simply an object to be diagnosed.