My name is Patty Derouchie and I speak for myself. I have a developmental disability. I also speak for Green Mountain Self- Advocates. We are a statewide organization run by people with developmental disabilities. We have 17 local groups and over 500 members. We call ourselves self-advocates and almost all of us receive developmental services. The end of life choice that people with developmental disabilities want is money for services so we don’t have to be a burden on our families. You should not consider this bill until all the necessary services are there for elders and people with disabilities. Until then, this bill is dangerous for people with developmental disabilities. Most of us live with our families. Now I am one of the lucky people who does get services so I can live on my own. But if I did not get services. I would have to live with my friends.
I am already very medically involved. But if I was very sickly or terminally ill and I were living with my friends who both worked plus had to take care of me I would feel like I was too much for them. So I would think why am I here? I would feel like I’m taking too much of their time. If somebody offered me a pill I would take it. So many people with developmental disabilities might say they want to die and not get treatment because they worry about being a burden on their family. Another reason why I am against this bill is because people with developmental disabilities can be easily talked into doing things So if somebody said take this pill they might say yes. Just all this talk about assisted suicide and quality of life makes us feel like no one wants to take care of us.
Mercy killing is well known to people with developmental disabilities. A Villanova University history professor (Mine Ener) used a 12-inch kitchen knife to slice the throat of her daughter, a 6-month-old (Raya Donagi), who had Down syndrome. Firefighters responded to a house fire in Elwood, Indiana and found the burned body of an 8-year-old. ( Mark Adrian Norris II). Autopsy results confirmed the boy, who had cerebral palsy and epilepsy, had actually died the day before – of malnourishment and neglect. His mother was not charged with murder. And in England last month, the news was full of the trial of a man (military security specialist Andrew Wragg), who told police he killed his 10 year old son, Jacob, because he was frustrated that his son was no longer able to recognize and communicate with him. Jurors were told he was embarrassed at having a son with a disability.
Some children with Down Syndrome are born with an obstruction in their intestine. The surgery to fix this is easy to do. In the past doctors would often tell parents that their child would not amount to much and would have a poor quality of life. Many families did not have the surgery and let their child die. In the 1960’s the average age at time of death for people with Down Syndrome was around 6 years old. Today because parents are given a more hopeful message the average age at time of death has gone up to the late 50’s.
And experts say that elder abuse is on the rise. Any group of people who are viewed as being vulnerable are going to be targets for abuse, neglect and exploitation. Today I saw my doctor and he does not agree with this bill. He said in China when babies are born with Downs Syndrome or severe disabilities – they do not even make it out of the delivery room.
Many people do not value me or respect me. I deal with discrimination a lot. Some people believe that living with a developmental disability is a life not worth living. We can not leave this decision up to families and doctors. The option of assisted suicide is too dangerous for people with developmental disabilities. I really hope that people can be medicated with the right medication to make them feel comfortable when they are dying. But I hope that this bill doesn’t get passed. Thank you for listening to me.