Alliance member Kathy Jo Ware, a nurse, disability rights activist, and mother of a young man with disabilities, wrote the following to Andrew Wig of the Sun Current in response to a recent and one-sided story on the push for legalized assisted suicide in Minnesota.
I wanted to email you directly to respond to your article about Bobbi Jacobsen and her “right to die.”
Does Bobbi want a doctor to write a prescription for her to commit suicide because of pain or because she is a person with a disability?
Let’s review the language involved in the article. Bobbi Jacobsen can “no longer speak intelligibly.” The words “suffers, suffered from, or suffer” are used three times in the article. You also state that she is “living with a crippling disease that has stolen control of her body.”
My son Kylen Ware is 22-years-old. He has quadriplegic cerebral palsy, intractable epilepsy, and profound cognitive disabilities. Kylen has never been able to “speak intelligibly.” Kylen does not have the cognitive ability to use an iPad, like Bobbi. Kylen has a chronic, life-long, disability and disease processes.
You see Andrew, I don’t think Bobbi wants a doctor to write her a prescription to kill herself because of pain. I think she wants a prescription from a doctor to kill herself when she simply wants to commit suicide because she does not want to live as a person with a disability (like my son) any longer.
Bobbi states that, “Eventually I will lose my ability to live without being attached to a machine that will breathe for me.” Bobbi does not have to get a surgical procedure for a tracheotomy tube if she does not want to. She does not have to consent to mechanical ventilation. There is no law and no physician who will force her to have a tracheotomy or mechanical ventilation. She can forgo these procedures. She can also forgo a gastrostomy feeding tube and decline to be fed through a hole in her stomach. These are all surgical procedures and interventions that require a patient to give consent to occur. Furthermore, if she can no longer move her arm or hands, how is it that Bobbi will self-administer the prescription for suicide that she would get from her physician?
I understand that what I wrote may sound harsh or non-sympathetic. But the statement that physician prescribed suicide makes on the lack of value of my son Kylen’s life is non-compassionate and harsh. I need people to understand what the meaning of all of this really is for my son. Senator Chris Eaton and Bobbi and other assisted suicide advocates that want the “end of life option act” passed in Minnesota need to fully grasp what they are really telling the public about people like Kylen. We support a doctor prescribing death for you when you can “No longer speak intelligibly”, and when you have had “control of your body stolen.” We support you killing yourself when you have “lost autonomy,” “are unable to engage in activities that make life enjoyable,” “lose control of your bodily functions,” “lose your dignity,” and “become a burden on family and friends.” We as a population support a doctor prescribing you medication to commit suicide.
Kylen Ware has been diapered for 22 years. He has never had control of his bodily functions. He uses a diaper for bowel movements and for urine. Kylen Ware has not had real autonomy in the sense that people without significant cognitive disabilities have. He has not had this autonomy for 22 years. Kylen Ware has required 1:1 direct care for 22 years. He is fed. He is clothed. He is pushed in his wheelchair, because unlike Bobbi, he would not understand how to use a power wheelchair. Kylen cannot use an iPad to speak for him.
It is an incompatible position to believe in life and dignity and the support of people with profound disabilities while at the same time wanting a law in place to allow a doctor to write a prescription for suicide for people who match their description.
The inference from Bobbi and Senator Eaton and the passing of this bill is that dignity does not exist in Kylen’s life. The conclusion that I draw from the proponents of the bill and the statistics in Oregon are that when your progressive disease gets to the point where you are just like Kylen Ware, we support you killing yourself.
I refute the argument that doctor prescribed suicide is about ending pain with public health statistics. Pain is number six on the list of reasons for Oregonians seeking a doctor’s prescription to kill themselves.
Reason’s 1-5 are about being a person with a disability. I wish Bobbi and Senator Eaton would put their efforts into disability advocacy and lobby for support for people rather than hasten their departure from the planet. Please understand why this is a disability rights issue.
-Kathy Jo Ware