Horacio Esparza habla sobre el suicidio asistido y le da un regalo a NDY

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Horacio Esparza

En julio de 2008, Horacio Esparza asumió el cargo como director ejecutivo del Centro de Vida Independiente Progress en Forest Park, Illinois. (Durante 12 años, yo también desempeñé el mismo papel, durante el cual también fundé y fui presidente de Not Dead Yet).

Horacio es invidente desde la infancia. Nació en México, a la edad de once años, convenció a sus padres para que lo dejaran ir a una escuela para niños invidentes. Finalmente, emigró a los EE. UU., Se nacionalizó ciudadano de éste país y su trayectoria de trabajo lo calificó para desempeñar su labor en el Centro Progress.

Horacio empezó a trabajar en el Centro Progress como Coordinador de Vida Independiente, ayudando a las personas con todo tipo de discapacidad a adquirir la información y las habilidades que necesitan para lograr sus objetivos personales. Poco tiempo después, fue nombrado Director del Centro de la oficina Satélite en el Sur, que sirve a los suburbios del sur del Condado de Cook, donde una parte importante de la población es latina.

Con el tiempo, Horacio habló de sus sentimientos sobre el suicidio asistido y Not Dead Yet. “Hace diecinueve años, cuando mi hijo tuvo un desprendimiento de retina, si una ley de suicidio asistido nos hubiera permitido a mi esposa y a mí suicidarnos, tal vez hubiéramos tomado esa decisión … Afortunadamente, encontré el Centro Progress y Not Dead Yet … Y eso cambió nuestras vidas. Ahora somos felices y exitosos. Una cosa que mucha gente ignora es que necesitamos motivación para vivir y no motivación para morir. Las personas que desean morir no se debe a su dolor físico, se debe a una falta de motivación “.

Quienes defienden la política pública de suicidio asistido argumentan que la motivación para vivir puede ser relevante para las personas con discapacidad, no para las personas con una condición terminal. Pero Horacio ha experimentado este problema en su familia cercana:

“Hace cuatro años, mi hermana mayor ( de 74 años) falleció. Tenía mieloma múltiple y nunca mencionó la palabra “morir”. Su mieloma empeoraba cada día e incluso hasta el último minuto ella expresó su deseo de vivir. Ella estuvo recibiendo consejería y todos los paliativos médicos para aliviar el dolor físico.
Mi hermana estaba motivada porque todos estábamos alrededor de ella mostrando nuestro apoyo y mostrándole cuánto la necesitábamos “.

A su madre de 95 años también se le ha diagnosticado mieloma múltiple. “Mi madre ha sido muy independiente y cuando su enfermedad le impide hacer las cosas por su cuenta, es cuando se deprime”, dice. “Ella tiene su propio departamento y las 24-7 una de sus hijas o hijos están con ella. Aunque ella tiene 95 años, nunca la hemos puesto en un asilo de ancianos. Y a veces nos dice: “No sé por qué tu padre no me llama para estar con él”, pero eso es cuando ella siente que es una carga para nosotros. Pienso que las personas con enfermedades terminales no es que quieran morir debido a su dolor físico, más bien, es cuando se les toca su dignidad, cuando sienten que los miembros de su familia no están viviendo sus propias vidas. Luego, cuando le mostramos cómo la necesitamos y cuánto la queremos, cuando le decimos lo mucho que significa para nosotros, la depresión cambia por la motivación “.

Durante varios años, Horacio ha sido miembro activo de la mesa directiva nacional de Not Dead Yet. Entre otras contribuciones a nuestro trabajo, él ha traducido al español un resumen de las razones clave por las cuales las leyes de suicidio asistido deben ser rechazadas debido a los peligros que representan para las personas mayores, enfermas y con discapacidad. Comparta el regalo de esta traducción con su familia, amigos y colegas en la comunidad latina.

Puntos Resumidos contra la Legalización del Suicidio Asistido

  • Si el suicidio asistido es legal, la vida de algunas personas terminará sin su consentimiento, a través de errores y abusos. Nunca se han promulgado garantías o incluso se han propuesto, que puedan impedir este resultado, que nunca se puede deshacer.
  • El suicidio asistido es demasiado peligroso.

> El suicidio asistido es una receta para el abuso, incluyendo el abuso de ancianos. Cuando el suicidio asistido es legal, un heredero o un cuidador abusivo puede dirigir a alguien hacia el suicidio asistido, atestiguar la solicitud, recoger la dosis letal, e incluso dar la droga – no se requieren testigos de la muerte, así que ¿quién lo sabría? No hay ningún requisito de que los fármacos letales sean auto administrados, permitiendo esencialmente la eutanasia por cualquier tercero.

> Los diagnósticos de enfermedad terminal son muy a menudo erróneos, llevando a la gente a renunciar al tratamiento ya perder buenos años de su vida, poniendo en peligro a las personas con discapacidades, las personas con enfermedades crónicas y otras personas diagnosticadas con enfermedades terminales.

> Las personas con depresión tienen un riesgo significativo.

> Una vez llenada la receta, no hay garantías. ¿Por qué faltan las garantías en el punto más importante?

  • El suicidio asistido se convertirá en la única opción que las personas de bajos ingresos pueden permitirse.

> El costo de los medicamentos para el suicidio recetado por el médico es minúsculo comparado con el costo de proporcionar tratamiento para hacer que un paciente se sienta más cómodo. Esta fuerza económica de gravedad es obvia y ya ha sido experimentada bajo la ley de suicidio asistido más antigua de nuestra nación en Oregón.

> No todas las familias apoyan. Algunos pacientes sienten que deben solicitar suicidio prescrito por el médico para no ser una carga financiera o emocional para su familia.

> Muchas familias están bajo tremenda tensión. En un momento de aumento de los costos de los alimentos, las ejecuciones hipotecarias caseras y la incertidumbre económica general, sería imprudente ignorar el papel que las finanzas jugarían al tomar decisiones al final de la vida.

> Incluso en las familias donde hay apoyo para un paciente diagnosticado con una enfermedad terminal, los pacientes podrían sentir que están siendo egoístas por no ahorrar a su familia. Esto se ha documentado en Oregon (2016) como una razón para solicitar una receta letal. Según el último informe oficial de Oregon, el 40 por ciento de los pacientes que murieron usando la ley de suicidio asistido de ese estado lo hizo para evitar ser una carga para su familia, amigos o cuidadores.

  • Las leyes de suicidio asistido no cuentan prácticamente con ninguna supervisión, y la recopilación de datos es extremadamente insuficiente.

> No hay investigación de abuso, ni siquiera una forma de denunciarlo. Los estados donde el suicidio asistido es legal hoy en día, como la ley de DC, no denuncian abusos y problemas.

Horacio Esparza Speaks About Assisted Suicide & Gives NDY A Gift

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Horacio Esparza – man in business suit and sunglasses holding microphone

In July 2008, Horacio Esparza stepped into his role as executive director of Progress Center for Independent Living in Forest Park, Illinois. (For 12 years, I had served in that same role, during which time I also founded and served as President of Not Dead Yet.)

Horacio has been blind since early childhood. Born in Mexico, by the age of eleven, he convinced his parents to let him go to a school for blind people. Eventually, he immigrated to the U.S., became a citizen, and built a work history that qualified him for his job at Progress Center.

Horacio had first worked for Progress Center as the Independent Living Coordinator, assisting people with all kinds of disabilities to acquire the information and skills they needed to achieve their personal goals. Later, he became the Director of the Center’s South Satellite, which served the suburbs of southern Cook County, where a significant portion of the population is Latino.

In time, Horacio explained something of his feelings about assisted suicide and Not Dead Yet. “Nineteen years ago when my son had a retinal detachment, if an assisted suicide law would have allowed me and my wife to commit suicide, maybe we would have made that choice… Fortunately, I found Progress Center and Not Dead Yet … and that changed our lives. Now we are happy and successful. One thing many people ignore is that we need motivation to live and not motivation to die. People wishing to die is not due to their body pain, it is due to a lack of motivation.”

Proponents of a public policy of assisted suicide argue that motivation to live may be relevant to people with disabilities, not to people with a terminal condition. But Horacio has experienced this issue in his close family.

“Four years ago, my oldest sister (age 74) passed away. She had multiple myeloma and she never mentioned the word ‘dying’. Her myeloma got worst each day and even to the last minute she expressed her desire to live. She was receiving all medical pain relief and counseling.

My sister was motivated because all of us were around her showing our support and showing her how much we needed her.”

His mother who is 95 has also been diagnosed with multiple myeloma. “My mother has been very independent and when her illness stops her from doing things on her own, that’s when she gets depressed,” he says. “She has her own apartment and 24-7 one of her daughters or sons are with her. Even though she is 95, we never put her in a nursing home. And sometimes she tells us, ‘I don’t know why your father doesn’t call me to be with him,’ but that’s when she feels she is giving us a hard time. I think people with terminal illnesses don’t want to die due to their body pain, but when their dignity is touched, when they feel their family members are not living their own lives. Then when we show her how we need her and how much we love her, when we tell her how much she means to us, the depression changes to motivation.”

For several years, Horacio has served on the national Board of Not Dead Yet. Among other contributions to our work, he’s translated into Spanish a summary of the key reasons that assisted suicide laws should be rejected because of the dangers they pose to old, ill and disabled people. Please share the gift of this translation with you family, friends and colleagues in the Latino Community.

Summary Points Against Bills to Legalize Assisted Suicide

  • If assisted suicide is legal, some people’s lives will be ended without their consent, through mistakes and abuse. No safeguards have ever been enacted or even proposed that can prevent this outcome, which can never be undone.
  • Assisted suicide is too dangerous.

>          Assisted suicide is a recipe for abuse, including elder abuse. Where assisted suicide is legal, an heir or abusive caregiver may steer someone towards assisted suicide, witness the request, pick up the lethal dose, and even give the drug—no witnesses are required at the death, so who would know?

>          Diagnoses of terminal illness are too often wrong, leading people to give up on treatment and lose good years of their lives, and endangering people with disabilities, people with chronic illness, and other people misdiagnosed as terminally ill.

>          People with depression are at significant risk.

>          Once the prescription is filled, there are no safeguards. Why are safeguards missing at the most important point?

  • Assisted suicide will become the only option low-income people can afford.

>          The cost of drugs for doctor-prescribed suicide is miniscule compared to the cost of providing treatment to make a patient more comfortable. This economic force of gravity is obvious and has already been experienced under our nation’s oldest assisted-suicide law in Oregon.

>          Not all families are supportive. Some patients will feel that they should request doctor-prescribed suicide so that they wouldn’t be a financial or emotional burden on their family.

>          Many families are under tremendous strain. At a time of rising food costs, home foreclosures and general economic uncertainty, it would be foolhardy to ignore the role that finances would play when making end-of-life decisions.

>          Even in families where there is support for a patient diagnosed with a terminal illness, patients could feel that they are being selfish for not sparing their family. This has been documented in Oregon as a reason for requesting a lethal prescription. According to Oregon’s latest (2016) official report, 40 percent of patients who died using that state’s assisted-suicide law did so to avoid being a burden on their family, friends or caregivers.

  • Assisted suicide laws feature virtually no oversight, and data collection is grossly insufficient.

>          There is no investigation of abuse, nor even a way to report it. The states where assisted suicide is legal today do not report abuses and problems.

Disability Advocates Opposing Maryland Assisted Suicide Bill Made To Wait…and Wait

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Not Dead Yet, the Resistance

No coverage of the assisted suicide issue is fair and balanced without the perspective of disability organizations and individuals who oppose it. Today, the Maryland House Health and Government Operations and Judiciary Committees are holding a joint legislative hearing on proposed physician-assisted suicide legislation – House Bill 399.

The committees decided to allow all witnesses in favor of the bill to testify first, forcing opponents to wait . . . and wait. For disability advocates, who often face complicated health and transportation issues, the committee’s biased decision may effectively block some from testifying. At least one disability advocate, Sheryl Grossman, already had to leave.

“We live with a profit driven healthcare system facing tremendous cost-cutting pressures. Assisted suicide is the cheapest ‘treatment’,” said Anita Cameron, Director of Minority Outreach for Not Dead Yet. “These bills grant legal immunity to doctors and others who assist suicides of people who may have a terminal condition. They do not prevent mistakes, coercion or abuse and, therefore, endanger the lives of old, ill and disabled people.”

To speak with Maryland and national disability advocates who oppose assisted suicide bills, please contact:

Sheryl Grossman, Maryland resident, with the Nat’l Council on Independent Living
314-863-3211

Anita Cameron, Director of Minority Outreach, Not Dead Yet
585-259-8746

Many Disability Advocates Blocked From Testifying At NJ Assisted Suicide Hearing

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Seven disability advocates representing national and New Jersey state organizations planned to testify at a state Senate Health, Human Services and Senior Citizens Committee on Thursday, February 7, beginning at 1:00 p.m., but only two were allowed to do so. Unlike NJ Committee hearings on the issue in previous years, the hearing was stopped at 2:30, cutting off many witnesses who had signed up to testify.

In an even more shocking political dirty trick, nj.com reports that last minute Committee reassignments substituted two legislators who would vote in favor of the bill for two Democrats who had previously voted against it.

[State Senate President Stephen] “Sweeney and Senate sponsor Nicholas Scutari, D-Union, do not sit on the health committee but participated instead of Sens. Ronald Rice, D-Essex, and Fred Madden, D-Gloucester, who voted against the bill when it was up for a committee vote in 2016.”

The two disability rights witnesses who were permitted to testify were Dawn Parkot who founded the Climb Organization and Lindsay Tuman on behalf of the DAWN Center for Independent Living. For Ms. Parkot’s testimony, go here, and for Ms. Tuman’s, go here.

Dawn Parkot’s brilliant op-ed also appeared in a leading New Jersey newspaper, very well worth reading: Here’s why a person with disabilities doesn’t want N.J. to have a law that allows people to kill themselves. [The paper’s editor gave it a misleading title, since the bill allows people to assist suicide; it’s not illegal to kill oneself – these bills immunize other people for assisting.]

Disability advocates who did not get to speak for even as little as two minutes, some of whom traveled there to represent national disability organizations, were:

  • Kate Blisard, New Jersey Not Dead Yet (testimony here)
  • Anita Cameron, Not Dead Yet
  • Kathryn Carroll, Center for Disability Rights
  • Erick Jones, ADAPT
  • Alex Thompson, United Spinal Assn.

More of the excluded testimony to be posted soon.

The Committee proceeded to vote 6-to-3 for the bill to proceed to the Senate floor. If the two legislators who previously voted against the bill had not been substituted out at the last minute and had voted as before, the vote would have been 5-to-4 against advancing the bill out of Committee.

From ASAN: Sign up to be a Day of Mourning Vigil Site Coordinator!

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[From our friends at the Autistic Self Advocacy Network:]

In the past five years, over 650 people with disabilities have been murdered by their parents, relatives, or caregivers.

On Friday, March 1st, the disability community will gather across the nation to remember these disabled victims of filicide – disabled people murdered by their family members or caregivers.

In the year since our last vigil, our community has lost over 70 more people to filicide. These are just the cases that we are aware of – since we began monitoring this issue, we learn about more murders every week. We read the victims’ names, see their photographs, and gather what information we can about their lives. The criminal justice system has continued to give lighter sentences to family and caregivers who murder disabled people, and the media continues to portray these murders in a sympathetic light.

We hold the Day of Mourning vigils to draw attention to these injustices, to commemorate the lives of victims, and demand justice and equal protection under the law for all people with disabilities. This would not be possible without the vital work of our volunteer site coordinators.  Click here to learn about what site coordinators do, or to sign up to lead a vigil.

Since 2012, ASAN and other disability rights organizations have come together to send a clear message that disability is not a justification for violence. We’ll be at our local vigils on Friday, March 1st – and we hope to see you there.

If you’re interested in leading a vigil in your area, please sign up to be a Day of Mourning vigil site coordinator. To learn more about Day of Mourning, see our Anti-Filicide Toolkit.