It is a rare thing for me to write about anything personal within the context of my family. However, I believe any child marginalised should have equal access to society. My eldest daughter was born with Spina Bifida, which is where the spine does not develop as normal in the foetus at roughly the 20 day point in their development. We knew that she had Spina Bifida at the first scan, which has meant that we have been on a slightly different journey of parenthood and family than most people.
My daughter is now 15, attending mainstream school, studying for GCSE exams (we are mid mocks at this moment), enjoys wheelchair racing, loves Glee, likes to do outdoor activities and is a full time wheelchair user. We have had a constant positive relationship with the NHS as we all work out what physically needs to happen, she has attended mainstream nursery, primary and secondary schools who have on the whole (bar a DofE expedition) accommodated her needs.
What I fail to fully understand, is why is it, despite the normalisation of our situation by us as family and friends, does society put barriers in the way which require constant negotiation. The aforementioned DofE expedition for which she was accepted on, was going to be walking over moorland, which meant that she had to drop out. Adults often talk to us as parents rather than my cognitively vibrant daughter, who definitely has an opinion. She is applying to attend a NCS course which uses an NCS Activity Provider who is struggling to go beyond sitting on a Paddle Board or observing other people’s activities.
The list would be too exhaustive for this blog, however the next time a person who does not fit in with your normalised view on society asks to engage with what you are doing, before you answer them (and do not be patronising) think about the costs it has involved for them just to ask the question; can I be a part of your world?