Please see my son as I see him.
My world has been entrenched in the arena of invisible disability for some 26 years. I love all the positive stories, the achievements and promises of better things to come, but I am aware that there is a sadder side to life etched with disability too.
It is hard to describe what it is like to swim against a constant and ever stronger current of questions, squeeze through ever tighter hoops and jump increasingly high hurdles in an effort to have someone’s needs met. I often observe a total lack of understanding and that is an agonising story that plays out in a lonely, slow-motion epic.
My son is a joy, a gift to the world, a gentle soul who depends entirely on the kindness, understanding and honesty of others. He has a whole host of invisible disabilities, a complex interplay of things which are just too much for one mind to successfully work with. He navigates the world without a compass and sees only kindness in others.
Today there is still a great deal of fear surrounding disability. I do see some subtle shifts, some positive changes for the better and a greater representation of disabled people in the media, but on the whole I find a world that doesn’t really “get” those who appear just like anyone else and yet behave somehow differently from the expected “norm”.
I want my son to learn to cope without me and I discovered that I was unable to keep him safe from exploitation by others. So I placed him in supported living at age 25 years. He looks just like any other “regular” guy but is an open book and there are always those ready and willing to exploit and humiliate difference. Yes, there are lots of really kind people who protect and look out for him, but no-one can truly keep him safe – not even me. It makes me extremely scared for him.
I am immensely proud and privileged to have him as my son, but that love does come with something that I call a chronic sorrow. It’s a sorrow that he doesn’t have buddies calling on him to take him on a night out, a sorrow that people sometimes treat him as less able than he is, and a sorrow that he didn’t get academic qualifications, because that set him up as unemployable. It’s a sorrow that he can’t drive a car or have the partner he would very much like (yet). And it’s a sorrow that everything is and will always be so much harder for him.
I just want the world to include him, to make adjustments to support and make things successful for him. I want the world to see the person that I see. I want it to be kind and I want to know that when I am no longer here he will be safe. I want people to challenge those who are uncomfortable in his presence, to make a stand for his absolute right to participate in the things he loves, and to give him the opportunity to adjust and adapt.
I like the positivity, I enjoy the messages of support and glee, the positive stories, the anything’s possible mentality but I also write the endless letters and wade through a mass of unwieldy bureaucracy and form filling, and assessments, and appointments when I just want to be playing in the sunshine and eating ice cream.
I never stop grieving for what might have been. That doesn’t make me grim and negative, it makes me human.
Please remember that lots of families deal with lots of additional pressures due to their children’s perceived disabilities. Sometimes they are sad and that’s OK. Just like everyone, we just want the best for our vulnerable loved ones. Often that is etched with a chronic sorrow.
Gill Dixon is a trustee of the Dyspraxia Foundation: