This page features reflections that are general and reflect the philosophies of S.A.F.E's founder and/or other members. They are not commentary on specific news stories, although real life stories may be used to emphasize the authors' positions.

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The Educational Caste System

As a student who recently graduated from college cum laude after a prior trek through twelve years of public schooling, the recent post in our Current News section strikes a personal cord. 

Although I have never experienced a potentially life-threatening battle with cancer, I have lived my entire life with a rare learning disorder known as NVLD, or Nonverbal Learning Disorder, so I understand how difficult it is to ensure that any student with disabilities is treated humanely by their school district. 

What strikes me about this case is the severity of Leanna Ramirez's handicap and the school's blatant disregard for the Americans with Disabilities Act. Clearly, this is a case where the student could not control her illness or its impact on her schoolwork, yet the school's attitude indicates that it cares more about enforcing  graduation requirements created for non-disabled students than it does about providing equal access to the basic experiences enjoyed by all graduating seniors. The premise underlying the Americans with Disabilities act is that all disabled Americans have a right to basic equality. 

One contention with this position is that the ADA establishes a requirement of "otherwise qualified," and that Ramirez's failure to pass her English course means that the school's decision to bar her from full participation in her graduation falls within the scope of this restriction. The problem with this part of the Americans with Disabilities Act is that it can be twisted to apply to things for which it was never intended. It is important to ensure that disabled students receive all of the instruction and opportunities they need to be successful after graduation, a right that could be ignored without graduation requirements, but  Ramirez will complete her English coursework over the summer and pass the class. Thus, this solution would fulfill the school's responsibility to prepare students for the collegiate, real-world challenges they will face, as such arrangements are often made between college students and officials. Thus, a similar arrangement in high school does not violate the ADA's requirement of being "otherwise qualified" to participate in an activity.  

From a more cynical perspective, I believe that this situation reflects an increasingly intolerant attitude toward disabled students in academia. It is as if school officials are trying to prove how tough their school is when enforcing its graduation requirements. Or, worse, they are entertaining the puerile argument that allowing Ramirez to participate fully is "unfair" to students who completed all of their graduation requirements. These students did not have cancer. Because of her circumstances, is elitist and morally wrong for the school to cloister Ramirez from other students who are receiving their diplomas on the premise that they are qualified to receive them and she is not. It is time academia realized that students with disabilities do not exist to be soothing representations of failure and mediocrity for schools and other students to compare with their success. The educational caste system, in which some students are forced to become Dalits in academia's quest to form a well-defined group of social leaders.   

Finally, as a read this story, I am reminded of the common right-to-die argument that people with disabilities cannot participate fully in life and that they can use euthanasia to eliminate this suffering. I'd like to see the organizations behind this so-called right show some interest in fighting for our right to participate fully in life, so that we do not want to kill ourselves. ACLU-the field's wide open. Jump right in!

I hope that Leanna Ramirez and her family do not give up her right to participate fully in her graduation. She has already overcome the challenges of her illness and shouldn't have to overcome her school system as well. Hopefully, however, she will be successful in doing so. 

 

Disagreement is not Condemnation

 

As I consider the case of Lauren Richards and her father’s efforts to continue feeding her, I am compelled to contemplate her mother’s decision in this matter and the motivation behind it. At this point, there is no indication that Lauren’s mother abused or mistreated her daughter. Thus, I assume that she is making her decision based on what she feels is best for her daughter and that she is deeply shaken over the situation she has found herself in.

     Clearly, I, as well as many others, disagree with Mrs. Richards’ decision, particularly because Lauren left nothing in writing asserting that she would prefer to die via dehydration than live in a disabled state. If she had, decision-making would simply revolve around whether Lauren understood the implications of dying this way, was informed about the advances made with medical technology, and about the state of individuals who are severely brain damaged. Medical evidence indicates that those who are perceived to be unconscious are often aware of their environment. Did Lauren know this? If she had written her wishes down during the Schiavo case, would  she have done so knowing that Terri Schiavo’s only “life support” was a feeding tube, and that she hadn’t been given any rehabilitation in ten years?

     Nevertheless, there is no written declaration, and based on this fact, I feel strongly that the court made an unfortunate and biased decision in granting sole guardianship to Lauren’s mother. The courts seem to believe that since Lauren may never improve, her mother’s assertions carry more weight than her father’s. This is a serious mistake and is, I believe, grounded in subconscious prejudice toward the handicapped. In short, I believe that the court felt it was doing what was in Lauren’s best interest and that removing her feeding tube, in keeping with her wishes, is the most compassionate thing to do. But, I believe that this court has ascribed to a standard of compassion which substitutes assistance with death as the easiest solution to the problems faced by brain-injured people instead of assistance with rehabilitation efforts and quality of life as the more difficult, but genuinely compassionate solution.

     Moreover, there is the issue of privacy. I firmly agree with many that this family situation should not be used by politicians, activists or others to further any political agenda. But, in the end, I also believe that this case is not about politics, right to life, right to die, or liberal vs. conservative. It is about a young woman whose prognosis is disputed by doctors, who’s parents both love her enough to fight for what they believe is right. It is, at it’s core, about a disabled, young woman living in the twenty-first century, where her society understands that starvation and dehydration are painful, uncivilized ways to put someone to death. Our society does not allow such measures to be carried out against criminals or animals, and so it should not allow them in the case of disabled human beings. Thus, even though this is a private matter and it certainly should never be used as political leverage, can we, as a society, accept such practices without at least saying something, and making our voices heard in the hope that we may be able to improve the situations of such families in the future? It is my fervent hope that those of all political, moral, and religious persuasions can work together toward the goal of pursuing research, rehabilitation, general protection, and rights for those who are too disabled to make their current wishes clearly known. As one of the most medically advanced societies in history, we have the power to provide medical, emotional and financial support to individuals and families who are affected by a severe handicap. As we respect autonomy, we should also respect the responsibility of all persons to reach out to those who are presented with a choice of their loved one remaining in the same state forever or dying through the withdrawal of food and hydration. There are other ways to support loved ones, and we, as a society, should be seeking to create a climate where doctors, courts, and other establishments are eager to help in attaining the highest quality of life possible.  Hopefully, those attributes can serve as encouragement for Lauren’s mother that her daughter may eventually improve; and that even if she does not,  the people reaching out to maintain Lauren’s feeding tube are reaching out to help her as well.

Death: Am I Afraid?

Over the last several years, some philosophers, bioethicists, and regular people have asserted that those who oppose removing the feeding tubes of the profoundly injured or disabled have an unhealthy or pathological fear of death. The founding premise for this assumption is that life with a feeding tube or other life support mechanism is so horrific that it is better to be dead.

Without going into the emotionally complicated real life stories cited elsewhere on this site, there are many logical arguments against this premise that do not indicate a lack of realism. First of all, the argument that death is better than living on life support is based on the belief that we know what it is like to be dead. Aside from near death experiences, there is, of course, no way of knowing this for certain. When someone dies, he or she might go to heaven, or to hell, or to the spirit realm, or become permanently unconscious: but the scientific method remains inapplicable.

Given this fact, the position that death is better than certain conditions is based on the individual's educated guess. Thus, the position that death is not better than being severely handicapped equally valid.

Secondly, the fear argument ignores the variety of viewpoints people have regarding the afterlife. For instance, Buddhism aspires to Nirvana: a place where one loses individual identity but is absorbed into a comforting, blank peacefulness where desire is nonexistent. Christianity believes that at death, God's children are reunited with Him in a paradise where everything good in this world is made perfect. Atheists believe that death is the cessation of one's existence: which is not frightening because someone who doesn't exist cannot feel fear or anxiety. People who support continued assistance for disabled people based on their needs hold various positions, any of which can be regarded in a positive light. Thus, it is illogical to argue that those who hold this position are afraid of death.

Thirdly, Nature has endowed mankind with a powerful survival instinct that ensures that civilization will continue. Without this survival instinct, people would die at a much higher rate. Nevertheless, this instinct can manifest itself ironic ways. For instance, some medical experts assert that in cases of severe depression or physical suffering, an individual's desire for death is connected to his or her survival instincts. In addition to avoiding helping us resist death, the survival instinct predisposes us to eliminate painful situations. In general, suicidal people see death as the only option for eliminating their pain, thus, they kill themselves in an attempt to escape. A major part of treating such individuals is focusing on other solutions to their problems, so that the survival instinct serves its intended function of enabling people to pursue happiness.

Based on this information, it is clear that people are supposed to be somewhat afraid of death, at least in the sense that it violates our natural instincts. Because of this, it is illogical to ask someone if they would "want" to live in with a severe disability. Of course we don't want to. Nevertheless, these things occur and we are saddled with responding to them.

Finally, humanitarian principles revolve around improving the lives of others so that they can live to the fullest extent possible until their deaths. Logically, this includes those who are severely ill or disabled, the most vulnerable people among us. We can improve the lives of these individuals by exposing them to pleasant things. For instance, people in minimally conscious states can be taken to the beach, read to, and exposed to music. This, of course, requires time, money and effort. But, rationally, sitting alone in a chair all day in a room smelling of antiseptic doesn't have to be their only activity. Logically, death is not the only way to help these individuals.

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Your Pain or Mine?

Please note that the excerpts from the following article are chosen by this author to make a point regarding the basis for futile care law ethics. While care has been taken to be fair to the article's author, I encourage everyone to read the full text of this article on our Futile Care/Advance Directives page.

I recently read an article in support of Futile Care Law. The strongest patient-centered argument for the Futile Care Law is that continued treatment can be painful for the person receiving it. The general law recognizes this about aggressive treatment, which is why it gives patients the freedom to decide whether or not to accept such treatment.

Nevertheless, futile care laws are not about what the patient wants or values. It is about what doctors want for their patients in respect to their values. An except from the article I read reads:

The proponents of the law, on the other hand, contend that hospital representatives and physicians try to act in the best interests of the patient, who may be in pain while being kept alive and while family members and surrogates feud over letting their loved one go. It is inhumane to prolong a dying process that causes pain to a patient, and physicians believe they should not be forced to provide treatment that violates their ethics.21 It is tough for physicians and nurses to watch their patients suffer horribly, and yet so unnecessarily. When patients reach the point when their treating physicians determine that continuing life-sustaining treatment is inappropriate, the patients are typically suffering from multiple organ failure, which usually prompts physicians to request an ethics committee review

This quote expresses legitimate concerns of ethical physicians when they choose to discontinue care against a patient or his family's wishes. One of the most important parts of the hypocrattic oath is a physician's promise to "do no harm," to their patients. Thus, it is understandable that in some cases, doctors may feel that continuing treatment violates that ethic.

Nevertheless, for all their contentions regarding the emotional state of family members and health care proxies, this excerpt clearly indicates an emotional basis for discontinuing a patient's treatment. This argument appeals to the emotional impact that caring for a dying patient has on the physician. Nevertheless, one of the main arguments for the futile care argument is that family members are too emotionally involved to make humane decisions regarding their loved one's care. Thus, one has to ask: why should any law validate the emotions of the doctors involved as indicating the appropriate course of action but invalidate the emotions of the person or his/her family in this regard?

Secondly, this argument appeals to the issue of force regarding how physicians are to proceed in treating their patients. The argument that doctors "should not be forced to provide treatment that violates their ethics," treats the doctor's ethics as primary over the ethics of the patient and her family. Freedom of conscience is a fundamental American liberty, but doctors are not entitled to exert their moral beliefs against those of the opposing parties. Because physicians will always have more power than the sick patient and his family, it is inappropriate not to limit their input to providing the care used to compensate for the person's illness or disability, even if they feel that it is inappropriate. Otherwise, doctors, rather than patients, will be able to determine how much suffering is too much suffering. Logically, this gives the physician's judgment and rights more credence then the patient's. History has shown us that this kind of power disparity can never be allowed to stand: there is too much room for the powerful to abuse the powerless, even if the intentions behind it are good.

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Media Frustrations

The following reflection is meant to serve as an example of media bias in regard to the report coverage that is given to issues directly relevant to the disability community. It is not meant to target MSNBC news as the primary or sole culprit of media bias in regard to these issues.

This is an email that I recently sent to MSNBC two articles that they published recently:


Date: Sun, 4 Nov 2007 12:46:29 -0800 (PST)
From: "SAFE nonprofit" <safe_nonprofit@yahoo.com>
Subject: Autism Labeling Article
To: Health@MSNBC.com

Dear MSNBC,

I am writing because your recent article on autism spectrum disorder, http://www.msnbc.msn.com/id/21600784, is inaccurate: milder forms of autism include not only Asbergers and PDD not otherwise specified, but also Nonverbal Learning Disorder, something that is similar to Asbergers with different features. You also wrote that, "The development of new stimulants and other medicines may have encouraged doctors to make diagnoses with the idea of treating them with these drugs." This is completely false, as there are currently no medications to treat autism spectrum disorders. This indicates that the writer and researchers involved in this article either got inaccurate information from somewhere, or that this statement was an extrapolation based on their own understanding of how attention deficit disorders, mood disorders and obsessive compulsive disorders are treated.

Moreover, the phraseology used in respect children being diagnosed with these disorders as special education services increase is inappropriate. Calling such a diagnosis "a 'ticket' to a larger range of school services and accommodations," which evokes imagery of someone getting a great deal on tickets for a rock concert. The kind of language, even if unintentional, feeds into the widespread cultural assumption that people have or will begin fabricating these disorders in order to get special privileges for their children who are nondisabled. This is one of the most virulent myths that harms learning disabled individuals by making people question the validity of their handicaps and withhold needed accommodations. Please do better research on this topic the next time you report on autism spectrum disorders and other disability issues.

I say this, moreover, because your article on a recent study that claims that there is no correlation between the legalization of euthanasia and the slippery slope argument you failed to mention the studier's history with the right to die movement or to provide adequate information on researchers whose work contradicts the results of this study. This lack of coverage makes it impossible for your readers to access both sides of that issue through your coverage, and, from that, determine their position on this issue.

It is clear that along with those suffering from incurable illnesses, people with severe disabilities and the elderly are the most vulnerable to requesting euthanasia. In the Netherlands, for instance, people have been killed without their consent, which has been attested to by several pro euthanasia doctors in that country who openly admit to doing this themselves. People suffering from eating disorders and depression have also been euthanized at their request, without attempt by those involved to alleviate the individuals' immediate suffering through other means, such as getting additional psychological screening or adapting that person's environment to his needs. Moreover, in Oregon, rationed Medicaid covers euthanasia as a form of "comfort care" but will not cover late term treatments for many disorders. This puts financial strain on those who need such treatments and encourages them to resort to euthanasia.

It is also a fact that only six medical schools require their students to take coursework in hospice care and pain management, which means that patients who are the most vulnerable to severe pain, such as those suffering from cancer, rheumatoid arthritis, and other injuries, suffer because their doctors haven't been trained to use pain control effectively, which is the fault of medical school curriculums across the country.

When you leave out these facts, you send the message that your network does not value disabled people on the same level as other people groups and that you have not seriously considered services for the disabled as diversity/equality issues with a broad cultural impact, or the fact that people with disabilities constitute a minority group with its own culture and heritage. I sincerely hope that your coverage on such issues will improve in its depth and balance.

Sincerely,

Meghan Schrader

Online resources National Center for Learning Disabilities, Inc. "The National Center for Learning Disabilities (NCLD) works to ensure that the nation's 15 million children, adolescents and adults with learning disabilities have every opportunity to succeed in school, work and life..." Nonverbal Learning Disabilities (NVLD): A Primer on a Puzzling Population By Dr. Sheldon H. Horowitz, Director of Professional Services, NCLD. Pediatricneurology.com "...pediatric neurology information on childhood seizures, epilepsy, headaches, migraine, autism, autistic spectrum disorders, Asperger's syndrome, PDD, pervasive developmental disorder, developmental delay, tics, child brain tumors, tics, Tourette's syndrome, types of learning disability, ADHD, ADD, simulations of Attention Deficit Hyperactivity Disorder, medications such as Ritalin, EEG tests , and MRI tests..." Autistic Spectrum Disorders: Sorting It Out By Martin L. Kutscher, M.D., Departments of Pediatrics and Neurology, New York Medical College, Valhalla, NY. Nonverbal Learning Disorders Association (NLDA) "A non-profit corporation dedicated to research, education, and advocacy for nonverbal learning disorders." What Is NLD? An 'A' That's Not a Scarlet Letter