About me

Look, no-one ever said I was sensible.  Or not a pig.   Like I said, people with disabilities do everything you do.  You would have had a good go at polishing that big-ass sundae off and so did I. With the help of my (plot twist!) non-disabled fiance, we managed it.

From birth, I had a progressive, genetic condition – although nobody figured that out until I’d undergone years of physio, thinking I was just really clumsy.  At age 21 the geneticists and my neurologist finally decided it was an extremely rare and little known condition called Ataxia Oculomotor Apraxia Type 2.  More research exists now but there is still very little  accurate information available.  It’s easy to buy into worst case scenarios but, since nobody really knows, I try not to read up on my possible future and take every new development sa it comes.

Growing up able-bodied and then gradually losing a lot of function in my muscles in my teens until I could no longer stand or walk was absolutely heart-breaking for me.  I loved sport and was very active in school and to suddenly have to give all that up and switch, almost overnight, to the more sedentary lifestyle of a wheelchair user would drive most people mad.  Again, I’m no different.  I had to give up my ambitions of learning to drive and of pursuing hockey to higher levels.  My family instilled in me a passion for learning and academics at a very early age and I’m so so lucky that’s always been a part of my life.  Walking isn’t everything.  Don’t get me wrong, I wish I had functional legs to make life easier on myself and the people I love, but I’d rather add a thoughtful mind to society than another pair of lower limbs.

There are facilities around for people with additional needs but things are far from perfect.  I never really noticed all the problems until they started affeccting me and my family.  A lot of people say the same when they go out with me – they start taking notice even when alone  because they are a little bit more aware of how common disability discrimination is.  I’ll post a blog entry as often as I can, or when I have something to say, about something I’ve seen or heard in the media, an experience or obsservation I think is worth talking about, maybe a problem with something that other people might be able to relate to.  It’ll be a surprise every time you visit.  If you have an opinion on anything or think there is something I should be talking about, just leave a comment on the blog.