When My Son's Invisible Disability Became Visible
Something has changed quite recently. Something simple, yet from society’s point of view, something quite life-changing.
It isn’t my son. His needs and difficulties are exactly the same as what they were yesterday. He still can’t speak and has limited communication. He still has global developmental delay and learning difficulties. He is still doubly incontinent and vision-impaired. He very much still has autism. His genetic condition (neurofibromatosis type 1) hasn’t miraculously disappeared. He requires full support to meet his every need. But something quite fundamental has changed for him.
For the first time, his invisible disabilities have become visible.
He has always flapped in public. And screamed. Those just generated stares and cheeky remarks.
He has always made strange noises and avoided eye contact. That just made people look the other way, pretending they don’t notice him.
We have used handicapped stalls for some time now. I think some people think I’m someone very special because I pull a key out my pocket to open the locked doors.
We park in handicapped parking spaces and display a “blue badge.” But we were questioned and accused because we lifted a child out the car who then proceeded to walk to where we were going. Why does society only think you are disabled if you physically can’t walk?
We have endured awful comments, hurtful stares and had many people avoid us when our son has been in obvious distress over sensory overload or frustration due to communication difficulties.
We have had to live with the fact our son didn’t “look” disabled, so to most people, that meant he couldn’t be disabled. It was frustrating, distressing and hurtful.
But now that has all changed. His invisible disability is now blatantly obvious. And the difference in the public’s attitude has been incredible.
We have just been given a wheelchair for Isaac.
Suddenly, people are smiling at his flapping, they find his noises endearing and cute and they even open the door to the disabled toilets to help me in. They no longer have an issue with me parking in a handicapped space because they see a wheelchair coming out of the back of the car and a child being lifted into it. Strangers are coming up and talking to us like we are no longer contagious. When my son screams, rocks and bites himself, people want to help and ask what they can do to assist us, instead of talking about us behind our backs or staring at us in disgust.
When we take him to appointments, people now go out of their way to help and support us. Even medical professionals seem to take things a little more seriously. People are listening, respecting and supporting us, whereas before these were all major challenges.
All we did was sit him in a chair with wheels. But it changed things.
They told me having a wheelchair would be life-changing. I certainly would agree with that. A simple chair with wheels and handles has made life more pleasant, more manageable and much safer. I was expecting it would be major change for us. I just never realized it would be a major change for everyone else.
When our son’s invisible disability suddenly became visible, we changed how we behaved. I viewed my son as disabled, but now because of a simple wheelchair, others see him as disabled, too. The thing is he is just the same Isaac he was before. The only thing that changed was a set of wheels.
Follow this journey on Faithmummy.