Independence means different things to different people. To know what independence means to a person, we need to ask, listen and repeat.
Our system is still learning to partner with people receiving services and resist the urge to tell them what is best for them. Edward Roberts, the father of the Independent Living Movement said about service professionals “People come to you and expect to be told what to do. It’s your job to place that power back into their hands. You are there to help them find out what they want to do… not to decide what you think is best for them.”
When we ask, listen and continue to ask and listen to people with disabilities express what independence means to them, the answer will most likely change if they have opportunities to experience independence. If not, then the answer may not change.
To know you have a preference is to have a choice and more choices lead to more opportunities for independence. So, independence could mean a person has more choices in their lives. Yet, statistically, people with disabilities often do not have as many opportunities for choice and control.
With the right supports, meaning an environment that supports safety and decision-making people can experience the community, manage their medications be safe in the kitchen, sleep without a staff person watching them, and so many other things, but most of all – continue to explore what independence means to them and live the life they choose – a self-determined life. I don’t know about you, but my personal goals even 10 years ago are different than today.
As we explore, fail, grow, and learn our goals change–because we change because our brains learn new things. If our environment does not provide opportunities, we do not grow, we can even decline. We start to forget how to make a choice, that we have a choice, that our opinion matters, our face may even have a blank look or flat affect. We can do better as a system. We can respect the dignity of risk/choice and provide supports that create a consistent and encouraging environment. This is possible today.
See how Emma’s mother describes their journey to independence and the importance of achieving the ability to live a self-directed life. Independence Day for Emma.
“After someone communicates something to you, you need to act on it and deliver on that promise [to listen]” – Donna, Emma’s mother.