“Having a disability or disease doesn’t have to be isolating.”
As medical students, we are often reminded to see the person before the disease. It’s a child with autism, not an autistic child, our instructor at Rainbow Centre would say.
Yet, sometimes I find myself forgetting and saying ‘bed XX is the COPD (Chronic Obstructive Pulmonary Disease)’, which horrifies me. It isn’t entirely our fault. The sheer intensity with which medical students are required to swallow conditions wholesale (and regurgitate them for our exams), means that we can spend far too long characterizing the sputum and skim past the social setup. Plus, it is more efficient to say ‘bed XX is the COPD’ than to say ‘the uncle in bed XX is the gentleman with COPD’. Both of these are not excuses. Since circumstance is such that it is easy for us to slip into bad habits, then we owe it to our patients to make an extra effort in reminding ourselves that they are, first and foremost, persons.
Which is why, websites such as The Mighty are so wonderful. The Mighty aims to build a community for people to ‘face disability, disease and mental illness together’ and is a platform for patients (and their families) to share their unique experiences in living with their medical conditions. Many of the stories are about strength and how their conditions add to (not detract from) who they are.
This video made by a photographer in honour of her sister who had Downs Syndrome is one such example. In it, she invites families of children with Downs Syndrome to give advice to parents whose children have just been diagnosed. Watching it taught me that Downs Syndrome doesn’t just mean Simian creases, wide set-eyes and a sandal gap. It can also stand for a loving family, strong parents and children who are beautiful- not in spite of, but because of their condition.
To anyone who has ever wanted to know more about the person behind the disease, I would recommend ‘The Mighty’.