by Scott Bartlett, Advocacy Specialist
The best part of advocacy to me is telling people with disabilities that they can do something they wish to do, when everyone else has told them that they cannot. In my career as an advocate, I have worked over ten thousand cases and many of those were about the balance between autonomy vs safety and the medical model vs the social model of disability. There are some cases that are very memorable. I will speak to one case in this note that demonstrates the dignity provided in allowing others to assume risk and the differences between the social and medical models of disability in how this case was viewed.
It is difficult to explain dignity of risk with only a traditional dictionary definition, so I will share an example of how I learned about it. I was a baby ombudsman and still cutting my advocacy teeth in 2005. This case set the pace for all my future advocacy efforts and remains the best way for me to show you dignity of risk in practice. I wrote a short article back in 2016 about this case that was published in the Senior Blue Book called “A Lesson Learned by an Ombudsman”. I copied the article for you.
“One of my first complaint investigations as a Long-Term Care Ombudsman came from a man who stated he was being denied dessert by staff at mealtimes. When I asked the facility about this, they responded that he is diabetic and should not have sweets by order of a physician and request of the family.
The complainant pointed out he was a veteran and stated very clearly that he had earned the right to eat chocolate cake after fighting in the South Pacific during WWII. He explained to me that he agreed his health was not the best and this was true, but that he understood the consequence and would still like to have dessert. He added that he needs a wheelchair and can’t see well so he depends on others to help him. He stated that in all his years he had never shared a room with another person other than his wife and had just moved into a room with a stranger. He had to sell his home and many of his possessions after his wife died. He now needed somebody to help him in most aspects of his daily life who were also strangers. Having dessert was one thing that was familiar and provided some distraction as to how much his life had changed recently. He asked me what should he live for if he is denied chocolate cake?
This was about his independence and restoring something to his life that gave him pleasure when he felt so much had already been taken. This was not about a sweet tooth as I first suspected. This complaint was about the dignity that is provided by allowing people to assume risk and make their own choices. Even when those choices would not be the choices, we would make for ourselves. This was about a man wanting some normalcy and control of his own life when he felt he had none. This was about how rights are altered for concerns of safety without consideration of harm to a person’s spirit. I learned there is dignity in allowing risk and that what may seem trivial may have much deeper meaning to another person.”
The medical model of disability says that this veteran must be disallowed sugary treats because he is diabetic. The medical model suggests that his family and doctors know better than he does as to his choices. The medical model disregards the cost to his dignity and mental health and defers to protecting him from having elevated blood sugar. The medical model treated him as if he were a child.
The social model of disability respects his choice to eat cake. The social model of disability says that he is the expert on his life choices and not his daughter and doctors. The social model of disability recognizes that perhaps the greater harm is in being a barrier to cake. The social model of disability tells us that others must honor his choice to assume risk, even when those choices are not the choices, we would make for ourselves.
This case was resolved, and the veteran got to eat dessert at his choosing. He told me in subsequent visits that he rarely ate dessert, but he was glad to have the choice. This was never about dessert, it was always about, dignity of risk and his autonomy.