I have heard from disabled friends and acquaintances some quite alarming stories about their various encounters with medical professionals, and although I empathised greatly with them, I couldn’t claim to have fully understood it.
Their stories ranged from minor slip ups, like a doctor telling a wheelchair user ‘please take a seat’, to far more serious errors. A specialist doctor made a comment to a friend of mine that her illness is in fact in her head and likely to stem from depression brought by her disability, dismissing completely that medical results did show irregularity in my friend’s physical health. Disability is a problematic concept for some non-disabled people, but to me it seems to be more so for medical professionals. They seem to mis-react to disabled patients in two classic ways; either attributing any symptoms/pain to the person’s impairment, or the complete opposite as they dismiss the disability and treat the patient without considering the implication of the condition.
Over the years, I have had my fair share of awkward moments with doctors, but I always overlooked them as I assumed they don’t deal with many disabled people or I put it as a simple mistake that anyone can make. Yet I often struggled with doctors who referred to my condition as a ‘disease’. It used to hurt and irritate me because what I have is not an illness; it is not contagious and certainly can’t be cured. It is just a condition that I was born with, just like there are people who are born blond or tall or of a certain shape. Again, I never complained or brought the attention of the doctor to his wrong choice of words.
My attitude changed completely this year, when I finally decided to take action after experiencing two incidents in a space of 5 days at my GP practice. I have been a patient at this practice since I was a child, so I was very well known there, and so when I got ill with a bad cough I phoned the practice and spoke to the on call doctor. Explaining that I am a ventilator user, have respiratory failure and heart murmur plus my actual disability, I asked him for a home visit as both my heart and chest were hurting. I also emphasised that I hardly ever ask for a home visit and would usually come out regardless of the pain I am in or the weather we are experiencing but in this instance I was very weak and needed to be checked.
To my great shock, he refused, claiming that they listened to my chest 4 days ago and it was clear and that I should just carry on with the medication. I was left speechless and had no idea what to do, all I knew was that I was feeling not only ill but very vulnerable too.
I thought about calling an ambulance, but I knew I was not unwell enough to be admitted into hospital. Plus the mere thought of sitting in casualty for hours to be examined by a doctor that had no clue of my medical history or disability filled me with fear; memories came flooding back of 9 years ago when hospital staff made a mistake by giving me too much Oxygen, causing my respiratory system to collapse and become reliant/addicted to my ventilator 24/7. Eventually I called my physiotherapist, who came to see me and listened to my chest, which made me feel safe again.
After few days, I developed another infection and again phoned the GP practice and this time a different doctor challenged my weight. She informed me that she would prescribe a certain medicine, I advised her that I take a child dose due to my weight. She did not respond, so I reiterated that my weight is 26kg; the doctor replied ‘is that your age?’. I said ‘No, my weight’, to which she claimed ‘It is impossible’! I was somewhat lost; I did not know how to convince her that this was my actual weight, so I politely insisted but again she dismissed me and said ‘You can’t be’. I thought the best thing was to inform her that I have Muscular Dystrophy, to which there was a complete silence. I figured out she had no idea what MD is and just repeated that I am disabled, and finally she seemed convinced as she exclaimed ‘Oh you are tiny!’.
I am not sure what angered me more: that fact that the doctor did not check my medical record before calling me, or the fact that she did not believe me when I told her how much I weigh. It is then that I decided to complain about both encounters, not because I want these individuals punished, but so that they learn from their mistakes and learn some basic disability awareness training to prevent others from undergoing similar experience to me.
By Raya Al-Jadir