Tag: policy

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Living In An Unjust World

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!

 

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Back To School Disaster

Have you ever felt beaten down; well I feel beaten down today. Ever since our child came into the world, we’ve been like any other parent and want nothing but the best for her. But that best is so obstructed by so many different means. And sadly to say, it’s only parents of special children that understand.

Excuse my expression, but it best sums  it  up, “You are damned if you do and you’re damned if you don’t”. I have advocated for disabled children on so many levels, it certainly doesn’t win you any popularity contest. But I’m not in this for the prestige or the social status. In reality, people look at you, as if you are committing a crime. Dare not fight for equal rights, all inclusion, accessibility, policy change or disturb the comfort zone of the ‘normal child’.

I am so amazed at our ‘all informed society”; that kids today don’t know what a wheelchair is. If parents could just take a moment and educate their children that we are all different, even if we don’t have a disability (a one we can’t see anyway). And different is not a bad thing, it’s okay to be different. For those who don’t know how to explain what a wheelchair is, I will do it for you. A wheelchair is a chair that has wheels that allows a person that has legs that don’t work because their brain is damaged and can’t tell their legs to move. Therefore they require a wheelchair to provide mobility (allows them to get from point A to point B) so they can move around independently. Having legs that don’t work is no different then someone having eyes that don’t work properly and therefore they have to wear glasses to see. Or maybe someone has ears that cannot properly hear and thus they have to wear hearing aids in their ears to hear. Because you have a disability doesn’t mean you have a intellectual disability; I’ve met people standing on two legs with very little intellect. It’s not rocket science, it’s simple; diversity is what makes us unique not defected.

Again this week, that ugly word came up again, policy, don’t get me wrong policy is great if it works; whether it’s our health care system, education system or legal system. But trying to adapt and adjust a five year old little girl with CEREBRAL PALSY into the school system that is bombarded by policy. WE can’t do this because that’s our policy, we can’t do that because that’s our policy; then to hell with policy. If it’s not working, and obviously it’s not, then it’s time for some change or a little tweaking. If this little girl is forced into an environment that she sees as frightening, scary and overwhelming and CP just intensifies these emotions. Then certainly our school system can adapt and adjust to a little change in policy to accommodate a little child, for what’s best for her; not the system. After all aren’t we living in an all inclusive society? So let’s protect our children, not the system. And for that to be done in “a nurturing, supportive, INCLUSIVE environment where all children are challenged and valued”. This week my thoughts have been challenged and disturbed to the cop out in order to save one from having to deal with conflicts to ‘policy’.

In order for this little girl to adjust properly, due to her CP, requires her to do it gradually with a parent or someone she is totally comfortable with, present to reassure her that this is a safe environment. This will only happen when she is introduced on HER terms; not the schools, not the unfamiliar team and certainly not the policy. Once she is eased into the environment, the parent can gradually exit the building and she can become the independent, intelligent and happy child that we know she was and is. If the school is not willing to make these adjustments, then this little girl will be having a very short school year. And only those who can help are the ones who right now strictly enforce policy that obviously requires leniency in practice.

For the protection of the school and child; names have been withheld.