Every night for as long as I can remember Mikey performs the same ritual at the end of the day. He switches off his computer and packs his bag. In go the headphones, the Ipad and the Ipod, the adapters and chargers. He checks that he has got all of his Slinkies and starts humming the Brum theme tune. He looks around the room in the same way that the garage owner does at the end the early Brum episodes, checking that everything is in its place, before switching off the light. He then leaves the room with the statement “and off he brummed all the way home”, continuing to hum the Brum theme tune as he goes.
If I’m in the room when it happens, I’ll be left sitting in the dark. No television, just Mikey humming to himself upstairs. If his brother is there the humming will be accompanied by the sounds of an alien life force getting blasted out of its virtual existence in the front room. The humour of it still makes me smile. Just as it calms me no matter what may have happened during the day.
Somebody wondered the other day what my motivations where for working with 7daysofaction. The suggestion was that I was using it as a stepping stone to something else and that as soon as it had served its purpose I had resigned and moved on. My immediate response was outrage with a large measure of righteous indignation thrown in. How dare they doubt my integrity? Had they any idea of the amount of time and effort that I had put into this?
Of course, they hadn’t and nor should they. And I guess they have every right to question my motivations. Just as I might to question theirs. The brutal realities of human motivation rarely survive close and honest self-examination. Had I seen the work with 7daysofaction as a stepping stone? Had I chosen to leave the campaign because I had taken that step and had what I wanted?
I don’t know what their answers to these questions are and genuinely don’t care.
For me, the answers are found in the moments after Mikey has switched off the light. Moments that define my life. Moments of calm and humour juxtaposed with an awareness, that just as that ritual gives me joy – it confines me – I cannot choose to not be there. I cannot choose to be in the pub or the gym or away on a business trip. I must be there when the light is switched off and he Brums his way home.
So perhaps my work for 7daysofaction was a stepping stone; a stepping stone out of the constraints of that moment. A search for a kind of freedom and self-realisation out of the contradiction of the moments that define the lives of so many parents who have become carers. And if that is the case had I got what I wanted from 7days and decided it was time to move on? Except there is no moving on from the joy and the constraint and the moment, that is both peace and prison.
But there is gratitude. Gratitude that I am sitting there, listening to him hum. And that I do not have to endure the horror that so many families do. Knowing that somebody else is in control of when they can and cannot see their son or daughter. The horror of knowing that they can be restrained and drugged for resisting the rules of the institution in which they are detained and of not knowing when it will all end. Or that it may even end in their death.
Gratitude and the knowledge that their horror could so easily be ours.
I won’t stop fighting for the rights of people with with learning disabilities and/or ASD, and for their place within our communities.