Kathy & Kylen
My name is Kathy Ware. I am a registered nurse with more than 25 years of nursing experience, a public health nurse, a disability rights advocate, and, first and foremost, the mother of Kylen and Konner.
My son Kylen is 32 years old. He has MEF2C haploinsufficiency syndrome, quadriplegic cerebral palsy, profound intellectual disability, and intractable epilepsy. He is nonspeaking, uses a wheelchair, wears diapers, receives nutrition through a feeding tube, and depends on medical technology and other people for his care. He is a beloved son and brother. His life has inherent worth.
I have spent decades advocating for people to recognize that worth. As both a nurse and a mother, I have witnessed how assumptions about disability can influence the way people are viewed and the care they receive.
If Kylen’s genetic condition had been identified before birth, his disabilities could have been presented as a reason to end the pregnancy. Thirty-two years into his life, I hear dependence, loss of bodily control, and being a burden to caregivers invoked as reasons people might seek assisted suicide. These are features of Kylen’s everyday life. They are not evidence that his life lacks value.
That is the connection I want people to confront: before birth, disability can be framed as a reason a person should never enter the world. Later, the realities of living with disability can be framed as reasons to leave it prematurely, based on other people’s judgments about that person’s quality of life or dignity. Where, in that narrative, is the unequivocal affirmation that people like my son belong here?
Kylen is not dying simply because he is disabled. Needing a diaper is not a terminal condition. A feeding tube is a means of nourishment. Dependence on another person does not make someone less human.
I oppose assisted suicide because I am deeply concerned about what choice means when people cannot reliably obtain the care, staffing, housing, and support they need to live. When someone feels like a burden, we must ask what support is missing and what messages they are receiving about the value of their life.
People with disabilities deserve meaningful choices about how and where they live. Families need dependable support. Integration cannot depend on family endurance.
Kylen does not have to earn his worth through independence. His dignity has never been missing. What is too often missing is society’s willingness to recognize it—and to provide the support that people with disabilities deserve throughout their lives.