NDY Advocate Lillibeth Navarro Speaks at Sacramento CA Rally for Veto

A diverse group of advocates led by people with disabilities held a rally at the State Capitol in Sacramento, California on September 24th to urge Governor Jerry Brown to veto the assisted suicide bill rammed through a special session of the state legislature two weeks ago.

Sacramento Rally Photo

[Photo of people with signs gathered near the stage of the rally.]

Among the disability leaders speaking at the rally was Lillibeth Navarro, a long time advocate with Not Dead Yet who is also the Founder and Executive Director of Communities Actively Living Independent & Free (CALIF).  Lillibeth discussed cost-cutting pressures on elders and people with disabilities to forego life sustaining medical care.  These pressures too often come from doctors, who would be the gatekeepers of assisted suicide.

Lillibeth and Marilyn 1 9-24-15 onstage

[Photo of Lillibeth Navarro speaking at rally with sign with the words “Doctor Assisted Suicide” in a red circle with a slash through it, with Marilyn Golden with a sign with the words “assisted suicide: Rx for Abuse” and a sign language interpreter also onstage.]

The full text of Lillibeth Navarro’s remarks are below.

My name is Lillibeth Navarro, a polio survivor dependent on a motorized wheelchair for mobility. I have a ventilator for breathing at night and a personal care assistant helps me with chores of daily living. I take pains to describe these details because I’m aware that I stand in line for the health care cost chopping board that could, with one policy decision, cut me off from the life giving supports I need as a person with a disability. Yet I work full time as a disability rights advocate and I manage an independent living center in Downtown Los Angeles.

With my work in the disability community, I see this frightening trend. Last week, a former co-worker called me distressed because the doctors wanted his grandmother brought to hospice care and to just be given sleeping medication and less food. They said her Alzheimer’s Disease is far gone affecting her ability to manage some basic bodily functions. Up to that point, the family was caring for their grandmom—she would still ride with them in the car for outings and sit with them watching TV. When they noticed that their Grandmom was getting slower and slower, they brought her to the doctor, hoping to get her some medication to improve her condition. They were shocked at the doctor’s suggestion of hospice care. Rejecting the prospect of leaving the Grandmom to the hospice nurses, the family decided to continue caring for her as they have been doing.

Two years ago, a school teacher brought me the case of a student with disability (specifically a speech impairment) distraught because she was in a fight with her brother for the life of their mother battling with cancer. The brother wanted their mother euthanized but his sister was opposing it because she was closer to her mom who had expressed the desire to live even just a little more. The hospital ethics committee forbade us from helping the daughter fight for the mother and was booted out of the ethics review committee meeting and entertained only the brother. Clearly the institutional bias was with the more able bodied sibling believed more competent to decide on the mother’s fate.

In an atmosphere like this, not even the tightest written safeguards purportedly included in the AB 15 Assisted Suicide bill will protect people with disabilities. What is most frightening of all is that the bill (and other similar bills) creates the most precipitious slippery slope toward the silent extermination of our people, the most vulnerable of them being people with terminal illnesses, most of whom are at the mercy of their HMOs, with no financial resources and physical energy to fight for their lives.

As a person with a disability who has survived polio and cancer, I have watched in alarm how quickly the atmosphere has changed over the years in the attitudes of the medical community about our treatment. The presumption of life has been eroded and replaced with a disturbing presumption of so-called “choice”, often interpreted to be the withdrawal of even the most routine life-sustaining food and water. Five years ago, I was asked by a physician if I would like a tracheotomy done on me if suddenly I came down with pneumonia and could not breathe! The episode alarmed me. Why was it even a question for him? Why do I first have to declare it on paper that I want to live if this doctor has sworn to the Hippocratic oath?

I find it quite outrageous that the terms “assisted suicide” are equated only with people with terminal illnesses. People without disabilities are not given help to commit suicide. They are given assistance of a different sort—they are encouraged to live by being put on suicide watch because their lives are perceived as worth saving. Hundreds of suicide hotlines are available in the community to coach them to rethink life toward possibilities and hope. On the other hand, people with disabilities are encouraged and assisted to do suicide and AB 15 is proposed to exonerate those who assist them to do it.

Because people with polio were not being “mercifully” killed in the 40s and 50s, because Vietnam veterans were coming home from the war and needed to be assisted to live, scientists and inventors have come up with with the most amazing gadgets that allow us today to move around in our motorized wheelchairs, to drive around with vehicles with hand-controls, therapies that allow us to work, have families, and participate fully in society.

Governor Brown, WE NEED YOUR VETO on this bill !