Just when I reach one of my lowest ebbs, there come two pictures of daffodils posted on Facebook by a lovely friend. I gaze at these and determine that what I most need is not courage or resignation, but discipline. And so decided, I don my scarf and coat and go outside for all of ten minutes in search of elusive daffodils nearby. It is windy and cold, a blast of spring air. As I gaze up into the sullen, darkening sky which mirrors my mood so neatly, I realise, This is not about me. I must not be selfish.
In writing my book, “Trapped: My Life With Cerebral Palsy” and now in narrating it for the audio book, I have at last accepted fully that, regardless of how humiliated I may feel, there is more at stake here, than my privacy or my sense of personal dignity. Other people are working hard for me, it is true, and many of them do so for little tangible reward. But the picture is bigger than this. I can read, and write, and I have a wonderful life. I have freedom to move and the space to express my preferences. I know that, most days, I do not do enough with that freedom, but at least I can move away from here. I have always known that, in life, it is having options that matters most.
There are millions of people in the world who suffer in silence, who endure cruelty, exclusion and neglect, and who have no-one to speak for them: millions of children who are misdiagnosed, misunderstood, pigeonholed, forgotten and overlooked: millions of adults who can do nothing about the places they find themselves in. As I write in my book,
“How many others with issues like mine are languishing in the shadows of institutional ignorance because their families listen politely to advice which owes more to prejudice and speculation than to hard facts or compassion? If it wasn’t for my mother’s decision so often to disagree, to go it alone, I would be in a “home,” possibly dead, having led only a teeny little bit of a life. No one would have known anything about me, or uncovered the thoughts lurking behind my eyes. The smallness of my life would have remained a hidden loss, overlooked, as the lives of so many disabled adults are overlooked.”
If my book can strike a blow for freedom of conscience, self-expression, human dignity and compassion, then the small terrors I have to endure are well worth the price. God will give me the strength to do as I must. And, with that faith, together we can all join and create miracles. I do so hope you agree.