When Lauren was diagnosed with Cerebral Palsy at the age of one; I knew we were in for the challenge of our lives. What I didn’t know was what those challenges would entail. We have had many obstacles, uncertainties, and battles that no human should have to fight. We have been bombarded by policy, protocol and ‘the Systems'( there are more then one).
If there ever was a day when I felt I failed my little girl, it was today. If there ever was a day I felt that the ‘systems’ failed her, then that would be every day. It’s been one disappointment after another, but why does it have to be that way? You would think a child with a disability would come first, no matter what; if it meant it was going to improve the quality of life for that child. But that’s not the way our society/world works. Agenda, policy and protocol supersedes the rights and privileges of even a little child. When you are faced with the real world, with a child who has a disability, you soon learn and experience things you would never believe otherwise.
I could share with you many injustices, discriminations, unfairness, inequalities, exclusions and the list could go on. I could name names of people from the school system, the School Board, the Dept. of Education itself, owners of public buildings, including Government buildings, all levels of Government from MHA’s-MP’s, Skate Canada; to name a few. But for our own sakes and the protection of our children, I won’t go there (right now anyway).
I have learned that we live in such a corrupt world, that human life is nothing more than a name or number on a piece of paper. We have fought many battles, that no parent should ever have to fight when they are already fighting against the biggest battle of their lives already, by raising a child with no supports, with so many needs. But I have found that some battles are never meant to be won. And at this point because I have failed to win some of those battles, I feel I have failed.
Just to give you an example, here is an excerpt of an email that I sent to the Human Rights Commission (kind of ironic in a way that I felt I was fighting the Human Rights Commission for human rights!). “So it is with great regret that we wish to withdraw our complaint: not that I don’t believe we don’t have a solid and valid case but we just don’t have the money to pay for a lawyer to represent Lauren. We live in a very unjust Society, when a five year old, disabled child is denied legal counsel because we are not rich. I believe I have failed my little girl but I will not take all the blame, I also feel The Human Rights Commission as failed her because they have failed to provide her with the rights she so deserves as a human being, the Legal System as failed her and Society as an whole. I will close this matter with a saddened and broken heart on behalf of Lauren. I am tired of fighting for Lauren’s rights and getting nowhere but I can say with certainty that I have tried with all I have, but there comes a time when you know you can do no more and I have reached that point”. This is just one of the many battles that we have been fighting behind the scenes, that nobody knows about and there are more.
The energy, the stress and stamina that is required to fight such needless battles is overwhelming. We are tired and exhausted but we have to go on and make the best life we can for Lauren, despite the forces that are against us. She deserves so much more, but lives in an uncaring world (for the most part, not all); that policy, protocol and agenda come first. I feel nothing but sadness for those who enforce these policies and protocol. I don’t know how they sleep at night, when they would rather protect their own agenda over that of a five year old, disabled child. And that my friend, is why we live in an unjust world!