It’s Rare ‘Condition’ Day!: AtaxiaUK and Me

February 28^th is Rare Disease day. That word ‘disease’ grates on me, I don’t like it at all. A disease is negative, contagious, unpleasant and unwanted. Someone with a disease is broken and needs a cure. It is an outdated term and saddles disabled people with very toxic labels. It simply fails to even come close to describing either Ataxia or my complex relationship with my Ataxia. I prefer ‘condition’, as this describes a neutral, changing state, something a person can qactually live with. I have raised this with the gatekeepers of Rare Disease Day, who I imagine are not disabled themselves, to no avail. It makes me angry that disabled people cannot choose the language other people use about us.