Edge-centric

Hello! I enjoyed your article and agree with your point of view. I am the mother of a ventilator dependent C2-4 quadriplegic child. Isaac will turn 6 yrs. old on Oct. 23. His injury was the result of an auto accident that happened on Nov. 24, 2004. While reading your editorial I was reminded of a week ago when I wrote an entry in what is called a CarePage, trying to drive home a similar point. I wanted to share it with you.
Kind Regards,
Catherine Wilcox

I have been told innumerable times that I have a talent for writing. But tell me, what good is a talent when it doesn’t motivate change? I have not written in the CarePages for several months now because there has been nothing positive to report. And I hate griping all the time about all the problems that have invited themselves into our lives due to circumstance. So here I am again, but this time I’ve had it. I am at my limit with this world that constantly seems to be in opposition with my family and the simple life that we would like to lead. Which brings me to what may as well be my first point: the words simple and disability were never meant to meet anywhere, least of all in the same sentence. I am so sick of all the ignorant hypocrites that run the bureaucracies that govern our lives. Sick of the people out there that hold positions of authority within institutions that were created for the benefit and protection of others. Their titles are nothing but a front for their real jobs as spendthrifts and spin doctors. I can tell you without a doubt that these people are NOT concerned with the best interests of those that they were put in place to ensure equality to. There is nothing equal about being disabled. “How can this be so?” you say, “What about all the laws in effect to protect disability rights and all the advocacy chapters out there?” And I say to you, these things would be wonderful, IF in fact they accomplished what their initial intent was, IF the initial intent was in fact for the good of the people that they “serve”. But they don’t. That’s a significant part of the problem. They may say they have a person’s best interest in mind but really they’re looking for the cheapest way to comply with the very minimum of the law. Or if they don’t feel like even doing that much work, they just twist the law into any interpretation they see fit, and that of course, coincides with their own agenda. Apparently in this world it is considered a heinous thing to be a good parent and fight for your children and your family. EVERYTHING has been a fight. And I do not say that lightly. It is truth, the stark reality in which my tender little family has been imprisoned in. That’s how it feels. You feel trapped. I feel so powerless against these huge conglomerates of agencies and establishments, lost amid their mazes of rules and regulations and practices and policies and just plain bullshit. Yup, I swore. I told you, I’ve had it. You should have seen me earlier when I got off the phone with Dawn B., a condescending power tripping “Director of Special Education” of the Livingston Educational Service Agency. Yeah, one of those agencies that are supposed to HELP children in Isaac’s position and work COLLABORATIVELY with parents in order to facilitate whatever is in “the best interest” of the child. I cried for two hours after hanging up with this woman. She had managed to lay the last straw upon the bonfire that I’ve been battling to keep under control for a long time now. It is appalling that we live in a world that finds it necessary to enforce actual LAWS in order to hold individuals and establishments accountable to being accessible so that ALL of human kind can participate. There is no “disability handbook” given to you when you leave the hospital. No direction. And that’s just the way all these agencies want it. They want you to be ignorant and stupid and unconcerned. That way they have free reign. And it is indeed free reign, over all aspects of our lives. The house we live in, the car we drive, how we spend our money, what nurse goes to school with Isaac, how he gets educated, where he is able to get health care, etc. is all delegated by outside bureaucracies. Some, if not most, of the people making our life decisions have never even met us. All we are is a name on a piece of paper, a file in a manila envelope on their desk. Where is the caring, human decency, and ethics that should govern us all? Where is the simple idea of right and wrong? Where is the compassion? Where is the feeling of community? Well, I can tell ya, it is definitely not here in Howell. I have never dealt with more self-advocating hypocrites in my life. And the very places that we are supposed to turn to for help are essentially powerless. They’re a nice idea. But they are far from effective in accomplishing anything. I’ve been told that all we need to do to include Isaac within our family is build on an extra accessible room at the end of the house and that is regarded as enough inclusion, to be segregated to one room. I’ve been told that we will be furnished an accessible van in which we can transport Isaac, after almost 2 years has passed since our discharge from the hospital. But the van is only to be used for Isaac’s transportation needs, not the rest of the family. However, Social Security regulates that we may only own one car. Paradox? I’ve been told that it is not my concern what nurse goes to school with Isaac, that this person’s qualifications and references are a personnel decision and that it is none of my business. We’re talking about the person that for 8 hours of every day is responsible for our son’s LIFE. But it’s none of my concern. I’ve been told that I am not qualified to take care of my son because I am not an RN. Regardless of my special training in taking care of Isaac specifically. And despite the fact that I am his MOTHER. He lives with ME. We don’t have a nurse 24 hours a day, and yet after almost two years my son’s still alive. Apparently dead with an RN caring for him is more beneficial than being alive with a parent without a nursing registration. My only hope is that there are others like us out there. Others that will fight until they lose their sanity in order to ensure that their child WILL NOT EVER SLIP THROUGH THE CRACKS. That they will stand up for what is right and decent no matter how big the opposition. I pray that they will stand up and make their voices heard. That they will scream until there is no air left in their lungs that what is happening is a disservice, not only to the disabled community and the people that care about them, but to all humanity. And isn’t humanity what it’s all about, being human, practicing what is humane. Well, I must have a different dictionary than the rest of the world, because mine defines humane as “marked by compassion, sympathy, or consideration for humans…”