I’m sure like many people over the past year and a bit, I’ve found one of the few positives to emerge from the pandemic is that I’ve been able to devote a little more time than usual to my own downtime. For me personally, this has always been reading and one of the most impactful reads I engaged in recently was a book called ‘Everything, Everything’.
‘Everything, Everything’ tells the story of a teenager called Maddy who was diagnosed with SCID (Severe Combined Immunodeficiency) as a baby which means she is highly susceptible to infectious diseases. For nearly the entirety of her life, she has never left her house once- a concept which prior to COVID-19 I‘m sure none of us could have ever even tried to fathom. SCID means Maddy is essentially allergic to just about everything outside her front door and thus has been forced to live the life of a prisoner inside the walls of her highly sterilized and fumigated home. Coincidentally her entire experience of life has been reduced to the brick walls of her house, online school and all.
Reading ‘Everything, Everything’ in the age of a pandemic caused me to not only reflect on everything ‘normal’ we take for granted in our everyday lives but also the privilege most of us possess in terms of our ability and well being. The majority of us have the freedom of not having to think twice about potential outside risks when going about our lives and have only been forced to rethink such a concept now that we are living in a pandemic. However for those with chronic illnesses, this has often been a regular worry and one that has only been severely intensified with the arrival of COVID-19.
The pandemic has bought along a mind-blowing amount of stress and worry about extra precautions for these people who at times have been too scared to step foot outside their front doors. Research from the ONS has found disabled people are suffering much more with factors such as anxiety and loneliness in these current times than their non disabled counterparts. It is also important to identify that when the pandemic does eventually one day come to an end, there will still be many people out there with intense and long term health related fears and worries that will not go away over night. I believe it is key to recognise the challenges people with life limiting disabilities face in their daily lives to ensure they feel heard and seen within their communities.
For me, reading such a book really helped me to step into the shoes of, and better understand, life from the point of view of someone with a life-limiting condition. It allowed me to identify and acknowledge my own health privilege in a way I have not before. I am a big believer in the idea that education is key and I believe the first step in this is to at least acknowledge that there are other variously abled people out there in the world who do live differently to you.
And don’t forget, whilst ‘Everything, Everything’ is available as a book and as a movie, you can also access it as an audiobook through the library today! 🙂