Thursday, May 29, 2014

America, Still the Land of the Free?

I believe that America is still the land of the free though sometimes there is reason to wonder! It seems that our hard-won freedoms and rights are still contested more than some would realize!

Winning our rights was only the first battle; maintaining them is the next! This is the "land of the free", but it is also "the home of the brave", brave people willing to continue to defend our individual constitutional rights wherever and whenever they are being violated.

 It is so important that with courage and moral strength we voice our support for those who find themselves in situations where their rights are being usurped. Individual rights is what defines this great nation.When so much as one person's rights and dignity is violated, all of our rights are potentially violated.

In my lifetime there have been a number of issues that come to mind where I feel my rights or those of my family have been violated, and I am sure that you can think of a few in yours as well.  Sometimes I have reacted more passively than I would like to admit, and other times, I voiced my objections loud and clear, and no matter whether I won or not, my voice at least was part of a collective reaction that in due time has gone on to change such situations in the future.

I was a certified special educator/specialist years ago when we first moved to Vermont.  I found myself in a state where funds were less available to support special education. I was without a position at the time, and found myself temporarily assigned as a substitute teacher to work with a child who had cerebral palsy. This child was unable to walk, speak or write. Although his handicap was not my particular area of expertise, it didn't take a brain surgeon to figure out that in fairness to this child, he needed special equipment in order to effectively communicate with others.

I was there to advocate for this child, if only for a  few days. I raised the question as to why this child didn't have a communication board. Although I was only one of many who voiced this same concern, it seems that the school board didn't feel it would be fair to the other children who didn't have one either, though clearly they didn't have the same needs. Politics and funding sadly ruled. Monies were not available so this child's need for special equipment was declined and hence his rights for a proper education violated.

Years after, I worked privately with a learning disabled child.  It was the concern of many that this child was potentially being used to express the parent's need for attention. When this occurs, it is labeled Marchausen Syndrome, and child advocates come out of the woodwork to the rescue such children, as they are not really ill or disabled but their needs are merely created by a parent in need of psychological attention. It is good to voice concerns and defend an individual's rights and their potential for abuse but in this case, the child truly had a medical problem that lead to learning problems that the parent was rightfully seeking support for, in this case from me, a learning specialist. Fortunately rights of this child and her parent's were protected and this child received the services that she was entitled to.

Recently Justine Pelletier has been featured in national news.  She is ill and was diagnosed with an unusual mitochondrial disorder, but in being transferred to Boston Children's Hospital, her diagnosis was scrutinized by another doctor who diagnosed her with a somatoform disorder instead.  This psychiatric disorder superseded the first diagnosis and seems to have unfairly "ruled" her care. It is believed by many that she was essentially "kidnapped" by Boston Children's Hospital and has been held in state custody for over a year, with gag orders for the parents to not speak up in her defense.

This has been  a parent's worst nightmare though the care they had sought for their child was from a different but equally prestigious hospital specialist. She is now being held and treated for a psych disorder against the wishes of her parents and her previous specialist! This has been an unprecedented serious violation of the parents' constitutional rights to choose what they feel is appropriate medical care for their child while the courts battle over her diagnosis and her individual rights. It appears that she is not benefiting from her psychological treatment for her condition may well be the metabolic disorder that she was originally diagnosed with and she is  likely suffering from not only gross injustice but improper care to both the public and parent's horror!

Being parents ourselves of children who had "out-of-the-ordinary-health-issues"  makes me more sensitive to the dilemma of parents working to deal with an unusual and unaccepted illness like that of Justine Pelletier. We sought medical advice for our children's health needs when they were newborn infants and well into their young adult years. We were told by more than one doctor, who did not see what we saw, that our concerns were unfounded and worse yet one doctor expressed that my first daughter's health issues were simply projected "parental issues" not unlike those children with Marchausen Syndrome. Unfortunately the doctors were proved wrong many years later when both of our girls were diagnosed with Late Stage Lyme, acquired in utero, though by then the diagnosis was too late to treat their conditions as simply or as effectively as when they were first noted by us.

As many of my readers know, I continue to voice my concerns that Chronic Lyme Disease become fully recognized by the medical community along with patient's needs and rights for ongoing treatment. Despite legislation being recently passed here in Vermont that is supposed to grant doctors the right to treat this illness using long term antibiotic treatment, many medical facilities are still not accepting the chronic disease as being treatable and are not allowing their doctors to treat chronic lyme patients. Our own doctor has suffered severe political scrutiny by the medical community for what I believe is his truly courageous work with chronic lyme patients.  Sadly his patients are continuing to have to seek treatment out-of-state or go without treatment altogether if they cannot afford such expense.

Injustices are not new. When we lived in Denver in the early 80's, and our first daughter was starting school, we open enrolled her in a public school close to my husband's work. It worked out well for a year and then she was not allowed to return to this same school in order than the numbers of their students be racially balanced. This meant that she would have to attend her local school, but she was not allowed to attend there either for the same reasons and she would instead be forced to be cross-bused far away from home to an area less safe, as well as less accessible to either of our work locations. We fought this mandate as it was clearly a case of reverse racial discrimination to resolve prior racial discrimination. We didn't win but we at least registered our complaint for what turned out to be a disruption and upset to our child, as well as us.  It was only this year that I heard that such reverse discrimination cases were upsetting enough to so many that they have at last been discontinued.

These are but a few examples where individual rights in this country have been violated.  Hats off to those who continue to fight for rights that have been usurped by others! It is only by such fights that wrongs are righted,even if not immediately. Voicing your concerns regarding the injustices that you see is the only way to maintain what is cherished by us all--our individual rights!

My next blog is about Jon Katz, one of our very own Common Thread Artists.  Not only is he the Common Thread Give-Away Artist for June, but is also an example of one of "the brave" in our country, taking on issues that are near and dear to his heart, to be a voice for the rights of carriage horses and their owners to live and work in New York City! Don't miss this blog on Monday or your chance to win a free sample of his work!