Redefining Disability Challenge – Question 27

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the twenty seventh question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge. Here is this week’s question:

What is your opinion about forced treatment, and who should decide when a person is or is not capable of making sound decisions about treatment?

Personal autonomy is important to me. My body is my own, and I expect to be part of any discussions related to my care or my life. I was raised by parents who supported this idea and taught me how important it was for me to be an expert on “Denise.”

As a child, I was never excluded from discussions between my doctors and my parents. They included me in every medical visit, even when the doctors wanted to talk to my parents about “things I wouldn’t understand.” My questions were answered with patience at a level appropriate to my cognitive ability and maturity. If doctors or interns asked my parents about having me removed from the room, they would explain this was my appointment, my body, and I had a right to be there. As a result, I learned about my disability at a young age and was able to explain it to other children who often asked, “Why do you walk funny?”

I am skeptical of any medical professional who does not treat me as an equal member of my care team, an expert on my body, capable of self-direction. I have ended relationships with doctors who came highly recommended as “experts” because they did not listen to me or acknowledge my questions or concerns. It is important for me to feel heard and respected as the expert on my body.

For the most part, I have never been in a situation where I have had to endure forced treatment, unless you count all of those years my parents forced me to do physical therapy as a child. I hated physical therapy. PT, which in my mind stood for Pain and Torture, consisted of having my contracted joints and muscles stretched two or three times each week by women who seemed nice enough on the surface but never quite convinced me they didn’t secretly want to see how much agony I could endure before crying out. It was a contest of wills. How long could I lay on the mat doing deep breathing while they manipulated my arms and legs? If I made them break a sweat trying to stretch my hamstrings, I won. I almost always won.

Looking back on the PT I received as a child, I know my parents were doing what they felt was best for me – and it was good for me to be active. I maintained the ability to walk until I was twenty years old. I lived without needing daily homecare until I was thirty four years old. My muscles would have atrophied at a faster rate and my joint contractures would have progressed at a more rapid pace without exercise and stretching.

My experiences with forced treatment as a child are much different than adults who live with intellectual disabilities or mental illness. Questions of capacity, or the ability to make decisions and understand the consequences of your actions, are grey areas and cause feelings of unease in many. Many feel they are acting “in the best interest of a patient” when they advocate for forced treatment, and maybe they are.

I don’t have answers. I have questions.

Should adults with intellectual disabilities be seen as capable of consenting to sex and receive appropriate sexual education? Should adults with a diagnosis of mental illness be forced to take medication in order to receive public assistance or crisis housing? Should single parents who acquire a disability automatically lose custody of their children just because of their new physical or mental disability? Should people in the early stages of Alzheimer’s be engaged in discussions about advanced directives and end of life care?

When I worked as a speech-language pathologist, I was often involved in conversations regarding a person’s ability to safely eat and swallow. My goal as a medical professional was to give as much information as I could so my clients could make informed decisions. I never told anyone, “You can’t eat anything by mouth ever again.” I did my best to explain the risks related to their specific case knowing they had the right to refuse the recommendations I made to their doctors, who had the power to change medical orders related to diet and food and fluid consistency.

Sometimes my clients went along with my recommendations and the prescribed diet changes. Sometimes they chose to refuse. I was never angry when my recommendations were ignored by a client. After all, I routinely ignore recommendations made by medical professionals who are “only concerned about me.”

If I demand the right to self-direct my own care, it is important to me that I take a stand for others who demand the same right. In my daily work activities, which now include advocating for self-directed home care, I try to educate others about the importance of autonomy. Fellow blogger Hannah, who writes over at The Pen is Mightier than the Sword, wrote a great post about a bill of rights as an autonomous disabled person.  In it she writes, “If I say that a solution does not work for me, people need to listen to that and respect that.”

Respect. Isn’t that what everyone wants? Isn’t it what we all deserve?