When Your Medical Treatment is Determined Because of a Disability


A few days ago, I came across a headline that read “BREAKING: Texas Man With Disability Dies After Doctors Refuse To Treat Him for COVID-19.” Having a child with a rare disease and a disability, I had to find out if this atrocious headline was accurate. Doctors had determined that this man did not have “quality of life,” therefore, he was not treatable for COVID-19. The hospital obtained a temporary power of attorney and overruled his family’s right to make the decision about his plan of care.

He was refused treatment and food and died six days later.

As the mother of a child with a disability, I am disgusted by this doctor and hospital’s actions. The law gives them the authority to play God and determine who lives and dies based on what they think is an appropriate quality of life. Did that doctor not take an oath to “do no harm” and care for those who are sick? As a country, we look closely at how we treat others, and people with disabilities need a place on this list. 

I am not a doctor, but I can’t imagine what this poor man endured during his final days. What his wife and children are going through not only with losing their father and husband, but not being able to have a say in his treatment.

Since the onset of COVID-19, I have been on high alert regarding my daughter’s health. Our family has taken every precaution to ensure she is safe and not exposed to this virus. I have read about several cases where people were denied treatment because of their disability. This is one of the many things that keeps me up at night. My concerns are not dramatic or an overreaction of a mother with a sick child. My fears are valid because it is occurring across our country. And I will be damned if a doctor determines whether my daughter will receive treatment based on what they “think” her quality of life is as determined by a medical textbook and the definition of Rett Syndrome.  

Hannah Joy cannot walk or speak, but those factors do not determine her quality of life. The qualities of her life have directly impacted many and are responsible for my shift as a person. Hannah gave me a new perspective and taught me to value every person and who they are inside, not because of their physical abilities. I went from a self-absorbed bubble to wanting to change the world. She has endured so much as an 8-year-old and continues to show strength and joy daily. 

People’s lives and the world will continue to change if Hannah is in it. As her mother and advocate, I will continue to be a voice for her and others that cannot fight for themselves. I will speak up for the ones that are being placed in a category that deems their “quality of life” not worthy of treatment.

This is why our family is taking precautions. Why we wear masks and why we practice social distancing. It’s not because of fear for ourselves, but for our daughter and others who need protection. 

I hear the many different sides. The ones who say “everyone is going to get it,” “it’s just like the flu,” or “it’s not a big deal.” I understand that we are all entitled to an opinion just like we are all entitled to receive the best care and treatment by the ones who have answered the call to help the sick. Some people will contract COVID-19, and it will affect them very little. My daughter is not in this category, so if you have a different view of this virus, good for you. I am glad that this doesn’t fill your headspace most of the day and doesn’t make you second guess every decision regarding your child’s health. I may have thought this way ten years ago, but now I have a loved one, my most precious child, that has changed all of that. I don’t live to take chances anymore. 

I now live in the “better safe than sorry” zone because I fear that the hospitals will fill up, the ventilators will be taken, and some doctor somewhere will decide that my daughter’s life isn’t worth saving.

What are your thoughts?