Re: The Disability Bill 2004 – 2005
This is a letter, from a father to his 11-year-old son, who is disabled.
Dear Mark,
I am writing this letter into the unknown. I know you will never be able to read or understand it, yet it seems like the only thing I can do just now. I lay you in your cot every night, not daring to think of tomorrow, of our future, of your future. But tonight it is different. I have just been at a meeting on the new Disability Bill, and I am troubled more than I have been for a long time, yet you still make me smile, as you have done, through dark days and bright since you were born eleven years ago. Thank you for that.
I am truly at a loss as to why they won’t listen. How is it that you scare them so much? Surely, you can’t walk or talk and you look funny and I know it is hard for them to see you through the distractions of what to them is not "normal". But that’s no excuse. We have been trying to show them for years that you are all there, a whole person – different, but nonetheless whole person – just like them.
A few years ago they - the Government – sought to introduce a Disability Bill. It was withdrawn, because it did not recognise you for the citizen you are. The Government reacted, and for nearly two years a consultation progress ensued. There was hope, they were going to listen to us, they were going to recognise that you have the right to services to access your basic rights. I am not talking about an annual holiday to Lourdes, no, but rather the security that the State would, as it does for all other citizens, do what was necessary to allow you to live out a basic existence, free from fear of being exploited – or worse – ignored, because the money was needed for some other requirement of the State.
Tonight, Mark, I learned that they have not listened. I felt the slap in my face as real as if the hand that delivered it was there. I despair. How can we leave you to these people when our time is gone? I have been in the residential units of your future. They exist today but a few miles from our house, grown adults confined to quarters built for children, nothing to do all day, except to go slowly mad.
We thought that the Bill would cure all that, but no, more of this crazy fear that you will bankrupt the State. Poor Mark, if you only knew what a treat you are. Your life is not to be facilitated without been shackled to "the availability of resources" or the grey notion of practicability. We were not looking for money. We were looking for security. We were not looking for everything now. We knew that it would take time. A slap in the face, that’s what we got. This Bill, supposedly the best thing to happen for people with disabilities since the foundation of the State, is 80% to do with the State running away and the balance a flawed attempt to give a little something.
Mark, I know you can’t be angry, nor can you despair; you don’t know how, but I do – I do, I am terrified that you will end up in a state of fear like so many before you.
Sleep well, my little man. Tomorrow we will try again.
Your Dad.
Tom Chambers
"The Billy Ranch"
Knocknageeha
Newport
Co. Mayo



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