Impact Feature Issue on Self-Determination and Supported Decision-Making for People with Intellectual, Developmental, and Other Disabilities

"There’s a better way to live": Reflections of a Self-Advocate

Authors

Patty Goss is a Self-Advocate living in Springfield, Missouri.

Danielle Underwood is Communications/Information Dissemination Staff at the UMKC Institute for Human Development, Kansas City, Missouri. She may be reached at underwooddm@umkc.edu.

I’ve been involved in self-advocacy since November of 2003. That was when I went to my first People First meeting. Before then, I didn’t even know self-advocacy existed. It’s been a big part of my life ever since. I’m a member of our statewide steering committee, and I never miss a meeting.

A photo of Patty Goss, who tells her personal story in “There’s a Better Way to Live: Reflections of a Self-Advocate.” She’s sitting in her wheelchair, looking at the camera and smiling. This image has been cut out of a larger photo and shows only her against a white background.

“I chose to get involved in the Missouri SDM Consortium so I could help change other people’s lives,” says Patty Goss.

I have some strong opinions about guardianship. It may be necessary in some cases, but for most people it’s not needed. They can make their own decisions, even if they need some supports. We all need support to make up our minds sometimes. Over time, I think everyone is able to learn to make their own choices when they’re given the right supports.

The bad part about going under guardianship is that people lose their rights. In some cases, you can’t choose who you date, what you eat for supper, or what movie you want to go to. You can’t choose to marry. That’s just not right. There’s a better way to live and it’s called Supported Decision-Making.

I chose to get involved in the Missouri SDM Consortium so I could help change other people’s lives. I think everybody ought to have the right to make decisions for themselves. I also think there’s strength in numbers. When people work together, they get more done and faster. There are new people going under guardianship every day in our state. We don’t have time to waste.

I went to both the symposium and then the first consortium meeting that happened later. It was a great couple of days. The ideas that were flowing in the room were enough to set the world on fire. We need a lot more education around the state for self-advocates, parents, service providers, families, judges, schools…everybody needs to be involved.

Sometimes self-advocates don’t know how to speak up. When you’re not even allowed to pick out the clothes you wear or own, how will you know what life choices you want to make? How will you know that you are able to make bigger choices? People rise to the expectations people have for them. So when parents, teachers, or community members have low expectations of people with disabilities, it keeps them down. It’s a challenge.

Direct support staff should ask people what they want to do each day. They can ask the person they work for what they’d like to have to eat, which restaurant they want to go to. They can ask if they want to go to a restaurant or make food at home, and then go with what they say, not override them. That would be a good place to start.

Think about it: If everybody had the right to make their own decisions, even if they needed support to do that, this world would be full of more happy and grateful people.