Yes I’m disabled, but my diagnosis might not be as relevant as you think

Disability awareness

Reading Time: 3 minutes

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.

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  • Nina, thank you. I’m so sorry anyone could treat you this way let alone a medical professional. Reading your piece resonated with the “but where are you from” questions I often hear.

    Keep shining x

  • I’m absolutely horrified at the questions the GP (of all people) asked.. but sadly, I’m not at all surprised. I’ve been learning Sign Language for a number of years now and have worked and have friends within the Deaf community and the stories that are told about how they have been treated by others (general public and professionals) are just absolutely outrageous and just make me so angry. I think awareness training should be compulsory.. but not just the practical stuff. Awareness needs to be about people.. on a human to human level. For it to be about the person rather than the chair.. or the Deafness. The one thing that many of my Deaf friends talk about is the sheer exhaustion from the fight regarding constant discrimination or bad treatment whether that’s an access issue or, like Nina’s story.. blatant rude and inappropriate behaviour..

    • I totally agree, Emma. And it is tiresome to be confronted with the same bullshit over and over again. I think things are slowly getting better, but we still got a long way to go.

  • Thanks Aisha – unfortunately it’s often medical professionals who seem to find it particularly difficult to engage with me without focusing on my diagnosis. I think this should be more addressed in medical degrees or courses.

    People who ask you where you’re from are dicks, I hope you have a snarky answer prepared.
    My current favourite answer to ‘what happened to you’ is ‘I had a bad encounter with an evil witch.’ I read it somewhere and plan to use it at the next given opportunity

  • The world is full of ignorance.. I heard somewhere recently that people form an impression of others in the first three seconds, 70% of that first opinion is formed due to the other person’s appearance and the remaining 30% on what they say and how.. Why can’t we all see people for who they are, which is not their external physical appearance or condition.

    In this case the medical professional who concentrated on you rather than your son was acting out of self interested curiosity and not concentrating upon the patient. Given that doctor surgery time is usually 10 minutes she really wasted your precious time!

    I hope your son is feeling better now and that so do you after sharing your understandable and justifiable annoyance.

    • Thanks Diane – I agree, we need to listen to people, not just assess them with a single glance. We are all good, a silly comment like that can’t bring us down!

  • Nina, I bristled on your behalf reading this – what a bloody impertinence – I think I would have punched her lights out! I think you are right that medical professionals often see people as a ‘condition’ rather than a person – perhaps partly that is a coping mechanism, but it’s still rude and potentially hurtful. Looking forward to reading more x

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