“Passing the Light of Truth”
November 6, 2005–The International Institute For Human Empowerment, Inc. (IIHE) is devoted to the principle that all people are created equal and entitled to certain rights, among them quality education, quality healthcare, quality food, and a peaceful and loving environment.
The IIHE is committed to confronting injustice caused by oppression, racism, and power imbalances created by laws and policies that inhibit and destroy possibilities for a True Democracy, defined as, “where all are equal, and all are truly free.” United We Stand: Reflections on a True Democracy, by Sue Kidd Shipe.
Truth is the greatest liberator. Therefore, the Institute is committed to seeking and speaking truth in all areas including media, government, law enforcement, religion, education, healthcare, and politics, from the individual and family level, to worldwide communications. Thus, participation in the IIHE requires individual commitment to equality in all of our systems.
Our motto is, “We will model the behavior we want from our children.”
We will seek to eliminate injustice through seeking and communicating truth and by living truthfully. We believe that contrast will confront; truth will triumph; non-violence will prevail; and equality will be a birthright.
When we speak of human rights, we must remember the least empowered because they cannot speak for themselves: the very young, severely disabled, and critically ill.
For several years, the Institute has been publishing and speaking on the topic of equality. Believing that we are all created equal is a principle upon which most of us would say that we stand.
The framers of the Constitution inspired us to create educational systems, healthcare systems, legal protections for freedom of speech, and an economic system that allows every person to work hard and acquire capital necessary to live, and even prosper with the acquisition of wealth. Many people have sacrificed their lives to protect our liberty. Many have worked hard at making our public services effective. We owe them our gratitude for establishing a country based upon personal freedom and responsibility. But, even with all of the great work that has been done, not all people are served, even to the level of being free to make important choices in their best interests.
As an educator in several capacities most of my adult life, I have tried to see that every child within my purview is served well. Have I succeeded? No. Have I tried many times to make changes within the educational system to made it fair for my students? Yes! Why have I been unsuccessful at times? “Not for lack of trying!” many would probably say about me.
I’ve been unsuccessful many times because the system we have created needs to be re-created with a vision of equality of outcomes for all. What do we want all students to know, be able to do, and be like? Equality of outcomes is not the current vision of our educational system as evidenced by our inequality of inputs.
As one with insurance, most of my personal experiences with the healthcare system have been adequate. This is a monstrously large system, full of inequalities. We all know this, as it is easier to see the deficiencies in healthcare, than in education. There are many levels of healthcare depending upon what one can afford. Many times healthcare professionals do not even tell patients about possible services to treat their medical issues because the healthcare professionals already know, according to the type of insurance one has, if one has insurance, what one is therefore entitled to. I can’t imagine the pain of knowing there are remedies for my patient’s illness, and not offering them because they are financially out of reach of the patient.
Although probably most of us have heard of instances of people being denied healthcare options because they had no, or inadequate insurance, I was brought face-to-face with those who suffer from these injustices when my Mother was hospitalized in 1997-1998.
Mother was the lucky one, I guess. While it’s hard to say that one who is suffering from lung cancer and related illness is lucky, she had good insurance and was not denied services, to my knowledge.
However, many other people in my wonderful home state of West Virginia are not so lucky as to even have insurance. When Mother needed rehabilitative services on several occasions to build her strength after surgeries or treatments, she got them. However, the rehabilitation center accepted only patients with insurance. What happened to some of those other patients who had also gone into intensive care areas and could have benefited from rehabilitation services afterward? I’ll tell you, and it isn’t pretty. But, you need to know, so please don’t stop reading here.
When lungs become stiff, perhaps from fibrosis caused by radiation treatments, scarring from surgeries and infections, or autoimmune illnesses such as Sarcoidosis, a ventilator can assist with breathing. Currently there are several uses for ventilators (breathing machines) including assisting the body during surgery or during very serious infections such as Legionnaires’ disease, helping babies with inadequate lung development or lung disease, or helping breathing when one is incapacitated with injuries such as the spinal injury suffered by Christopher Reeves.
Children are sometimes on ventilators for long periods of time. Typically, we hear of ventilators only when brain-injured or “brain dead” people are removed from them. This misconception, or lack of general knowledge, about their potential uses for good has restricted their development, making them very expensive, under-utilized, and mostly unavailable. This is an area of research that needs to be supported and expanded. In addition, our lack of knowledge is compounded by a much-purported “ethic” called quality of life decision-making. One interpretation of this view is, “if you can’t have life as you would want it, die,” and miss many opportunities with loved ones, although physically limited.
This “philosophy” or “ethic” is restricting quality research that could make ventilators smaller, easily portable, perhaps even placed internally, and available to the general public. However, from my experiences, if the one who could benefit from ventilators doesn’t have good insurance, the patient may never know of the option, or it will be offered for only a period of time. I am not writing about people who are considered “brain-dead”. I am writing about a practice, perhaps necessary because of lack of insurance or independent resources, where the patient is told that he will be taken off the ventilator to try to “make it without the ventilator” with a prearranged agreement that he will be allowed to die if unable to breathe on his own. Legally, one can choose what, if any, life support options one will want or allow. However, if one cannot pay for them, choices may be restricted.
I value deeply my friends who are doctors faced with giving life options to the critically ill. They make the hard decisions I couldn’t make. But they are faced with giving their patients this horrible option, to try to “make it” without being put back on the vent if unable, because there is no money available to continue the services, because of difficulty caring for one at home on a ventilator, and because their patients cannot afford to pay for these machines which are rented out by medical equipment companies at exorbitant prices.
Inequalities are everywhere. While some of our “systems” in the United States may be among the best in the world, they are woefully inadequate for about 1/3 to 1/2, or more, of the population.
Visit, as I have, the lowest-performing public schools in New York City and other large cities, and ask yourself if the education system is fair to children. Ask yourself if you truly believe that poor, primarily minority, inner-city children, deserve an education that allows them to learn how to succeed and contribute in life. Without education, most are doomed to live amidst crime and violence, and to perpetuate a cycle of dysfunction that we say that we want to interrupt. Visit the rural poor. Would you want your children in some of these schools that are often bereft of adequate supplemental services? If we are content with the inequalities that exist in our high poverty areas, we will continue to ignore these horrendous conditions until a rebellion of the under-served occurs.
Visit hospital intensive care sections, especially in low-income areas, and ask yourself if people should have to die because they can’t afford services.
My Mother, with the best of insurances, was not admitted into any nursing home in the entire state of West Virginia because the West Virginia Legislature never appropriated any reimbursement for ventilator services in nursing homes. Therefore, not one nursing home in the entire state would accept her! Insurance companies don’t want to pay for these services. The services are very expensive because We, the People, haven’t demanded that research be done to improve ventilators so that they can be more efficient, more available, and, therefore, more cost-effective. We must demand that this life-preserving option be available to anyone who wants it!
“Quality of life” decision-making may not have been invented by the insurance industry, but the industry benefits from promoting it as “ethics.”
My Mother lived on a ventilator for 18 months. She smiled, watched television, looked forward to family visits, and wanted to live to look after my Father. Her smile when he would enter the doorway of her hospital room was known throughout the hospital. When they bought a condo so Dad could be near her in the hospital, I carried samples of flooring and wall covering, and many catalogs of light fixtures, fireplaces, cabinetry, and drapery fabrics to her. We had fun being together, and she loved being in charge of every decorating detail for the new place she wanted to go home to.
She made it home, on life supports, for three weeks. She returned to the hospital, and later passed on when the cancer returned for the third time. She lived eight years after her initial diagnosis. I believe that she taught us so much during those years.
When Dad and I sat together in the intensive care area a number of times, knowing that others without insurance were dying due to the lack of the same medical options, we vowed we would make this inequity public! However, he died 41 days after Mother, and I am trying to fulfill our vow. Won’t you help me by forwarding this possibly life-saving letter to everyone on your e-mail list?
It’s time that we all put our principles into action! Speak out! Find sympathetic legislators or legislative candidates! Vote! We must all act now so that our systems will be re-thought, and perhaps re-invented, with the ill who perished without adequate medical options, and the children living in poverty of body and intellect, in mind.
This Meditation is dedicated to my Mother, Madelyn Conrad Kidd, who taught us that even in some of the worst of circumstances, there can be quality of life. We’ll keep her story alive!
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Sue Kidd Shipe
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