31/10/2024
When I was a child, I had a neighbor a few doors down from me with a severe disability, in those days they referred to people with disabilities as 'spastic.' Every morning and night she would be picked up and dropped off by the blue bus people referred to as the 'spastic bus. This young lady was lovingly looked after by a relative who took her on daily walks, and I always said hello to her, although she had no speech, I knew she had awareness. The cruelty in those days for special needs people was abhorrent. Change has come about & progress/inclusion made, however there are still some serious deficits with disability inclusion.
As you all know I have 'special needs' boy, now a young adult who has severely suffered in the hands of our hospital and medical system. Serious conditions misdiagnosed due to them not understanding how pain can present with autism, even when you educate them, surgeries failed and repeated due to disability human rights ignored. It is sad to say in our hospital system the treatment of people with special needs is still many years behind and appalling.
The grief and sadness I have carried over the last few years has been challenging but the hardest thing is the feeling of powerlessness against the medical system.
I will keep advocating until my last breath & sometimes I feel like there is progress, other times 20 steps backwards.
I gotta lot of fight in me, because it is a fight.
I am so ashamed of our medical system.
My story will go public, it is work in progress.
It needs to be told.
