Pastor Nancy Butler died shortly after she decided to stop using her feeding tube and ventilator. Amyotrophic lateral sclerosis (ALS) had changed her life dramatically over the last several years.
Most people would find it understandable that after a particularly miserable day and night, she would type to her husband on her communication device, “I’m done. I can’t do this anymore.”
It is not my purpose to stand in judgment over Pastor Butler’s decision. Nevertheless, I feel compelled to raise some concerns about what may have prompted her decision, as well as its impact. As someone with a progressive disability, who has used a feeding tube for almost 20 years and may well have a ventilator in my future, I think I have the standing to voice these concerns.
First, to what extent were Pastor Butler’s actions influenced by feelings of being a burden? In her final letter to her congregation, she wrote, “I knew my suffering would reach this tipping point and caring for me would become impossibly demanding.”
It is typical for disabled people to feel that the support we require puts an undue strain on the people around us. This can easily lead to the conclusion that our loved ones would be better off without us.