Kathy & Kylen

My name is Kathy Ware. I am first and foremost a mother to two sons, my twenty-one-year-old, Kylen, and Connor who is fourteen. Secondly, I am an MNA union dues paying nurse of seventeen years. I want you to know that assisted suicide is an attack on disability rights and that’s why I’m here.

Kylen Ware has incurable and irreversible medical conditions and lifelong chronic disabilities. He has a seizure disorder, quadriplegic cerebral palsy, and profound mental retardation. I have spent the past twenty-one years of my life as a disability advocate trying to get people to see the dignity and the value and the worth of his life.

Oregon Public Health lists the top five reasons for seeking physician-assisted suicide. Number one is “losing autonomy”; that is Kylen Ware, that is disability. Number two is being “less able to engage in activities;” that is Kylen Ware, that is disability. Number three, “loss of dignity”, which is what I am trying to maintain my son has to the world and to the state of Minnesota. “Losing control of bodily functions” is number four. This one just makes me angry. My son has been diapered for twenty-one years. I don’t think that should be a reason why we go to a doctor to seek physician-assisted suicide. Is that really a reason? Because a person is diapered therefore their lives are less dignified? I don’t think so. “Burden to family and caregivers,” that’s the last one on the list for Oregonians seeking physician-assisted suicide. People wouldn’t pursue physician-assisted suicide if they had the help and the care that they need to take care of their loved one. If this bill was passed, it would be telling people that if you don’t want to feel like a burden, you should go to the doctor to end your life. I don’t want people to look at my son and see a dollar sign, to see a burden and not my son who is inherently valuable to us.

As people from the disability community, we aren’t asking for pity. We want support and we want help and we want our lives to be recognized as valuable. Again, I have worked as a registered nurse for seventeen years. I know the medical bias in the community, I’ve experienced it. I have had nurses come out of patients’ rooms and say, “Jeez if I ever get like that, tattoo DNR/DNI on my chest.” (Do Not Resuscitate/Do Not Intubate.) And I have sat at the nurses’ station and thought, get like what? Like my son?

Recently, I took both my sons in for dental procedures. Same exact dental procedure. Why does the medical community want to know if Kylen Ware is DNR-DNI and do not resuscitate him? But nobody asks me that about my healthy, non-disabled fourteen-year-old? Why is that? What if I want to make Connor DNR/DNI? Are you all okay with that? Because if you’re not, why are you okay with making Kylen DNR/DNI? These are the issues of a population with disabilities. This is a disability rights issue.


Contact Us

The Minnesota Alliance for Ethical Healthcare wants to hear from you. Share your stories and experiences. Let us know how we can answer your questions.