I was born with cerebral palsy and secondary hemiparesis (weakness on one side of my body), which doctors only told when I was in my mid 20s. It’s a relatively mild form but the difficulties I faced were always pretty significant, particularly not knowing why I had problems with things others found easy. I have collected chronic conditions throughout my life as if they were going out of fashion. These include asthma, decreased lung capacity in one lung, fibromyalgia, CFS/ME, PCOS, endometriosis, allergies, cardiac dysautonomia, and other things. I recently found out these pointed to another underlying cause; a connective tissue disorder called Elhers Danlos Syndrome, which I’ve had since birth. I found out in my 40th year. Collectively these conditions and other peoples’ misunderstanding can be progressively disabling, and in fact I went from dancing, travelling and rock climbing, and projects in conflict zones, and working with at-risk groups including children, to being an at-risk person myself, mainly bedbound. But words can take you where feet never can, and art can create new worlds in our imaginations. I decided to reclaim my story in the hopes that more people hear and understand and others in similar positions feel able to speak too. We all favour different descriptions of ourselves. I prefer to be called a person with disabilities / special access needs rather than a disabled person.
Chronic Illness and disability is a thread throughout my work. I had a proactive existence for many years despite the extra barriers faced by people with disabilities, seen and unseen. Now I’m proactive through my words. I’ve worked in arts, interfaith and politics and was physically active until recent years. My article titled ‘Two People and a Wheelchair User’ published in January 2019, tackles some of the issues facing myself and many others. My aim was to do this head on but with humour and self-knowing. An (incomplete) list of particularly relevant work is below. I hope you find something that speaks to you:
You can see archives at The Asthma Diaries including my usual blend of poems and ponderings. A collection of my more political poems sometimes touches directly upon bars to inclusion and access or limited rights. Conversely, my fantasy writing is a willful act of escape and re-imagining of reality, examining the world from the outside in. Most recently I’ve co-founded Nott Normal an accessible multi-discipline art project run by and for the people who need it most.
Antonia Sara Zenkevitch 