Shortly after my diagnosis with Guillain-Barré Syndrome (GBS) and Neurogenic Heterotopic Ossification (NHO) I met someone who was in remission; she maintained that as cancer was never in control of her life she uses the label fighter versus survivor. The self-assurance in her belief made me pause and reflect – there was no denying her elation in declaring that she did not merely survive but in fact remained in control, fought and won against a tyrant such as cancer.
Recently, my cousin who has Alopecia asked why persons refer to her as ‘suffering with alopecia’ – she made it clear that she was neither suffering nor a victim of the disorder. Again I was awed by how the commonly used references when describing medical conditions can have significantly different meanings when considered from an individual’s perspective.
These first-hand experiences coupled with others that I have read about online confirm that self-perception and preferred ‘labels’ can have a profound and positive impact on attitudes. It is therefore easy to understand why individuals, groups and organizations worldwide reject and/or accept the labels survivor, victim, fighter, sufferer, diseased and afflicted with. There is also no mystery behind the fervent debates about terms such as wheelchair dependent/bound versus mobility issues; differently abled versus disabled; disability versus impairment and accessible parking versus handicapped parking just to name a few. Coping with illness, lost and differences – whether inherited at birth or acquired later in life – demands that you define / redefine yourself in the most comfortable and self-motivating way possible.
Admittedly, on some level these debates influence the labels and phrases I use to speak or write about myself, GBS and NHO. However, if I am asked how important it is to use or be referred to by any one definitive label my answer will be that the differentiation is not what is more important to me. At different times in a single day I can easily identify with the points made to support all of them but whether I define myself as wheelchair dependent or as having mobility issues becomes entirely irrelevant when:
- my wheelchair topples because the car park at the therapy centre is uneven
- the accessible parking spot has a curb ramp with a 2” concrete lip making it impossible to mount without assistance
- ramps providing access to public buildings are too steep to navigate safely
- doorways and hallways are too narrow to pass through without injuring my hands
What is more important to me is the ‘labour’ necessary to upgrade the grossly inadequate building and street infrastructure available at key points in Barbados. A sign and designated parking area does not translate to safe access and far too often essential resources become limited or unavailable.
30th September, 2018: 969 days with GBS & NHO and I am debating first and foremost for greater focus and understanding of the societal barriers that disable me just as much as my conditions do.
*** change the narrative with education, compassion & labour ***
P.S. Stella Young said that smiling at a flight of stairs will not turn it into a ramp nor will radiating positivity at a shelf of books make them braille…a positive attitude can only do so much!
