Once I heard a presentation by Dr. Sy Saeed, the Chief of Psychiatry at East Carolina State University Medical School. He was addressing advocates, system providers, administrators, and residents in training at the medical school.
He said, “Life for consumers should not be like a Bingo game.”
He was referring to the minimal role people have in determining what happened to them through the service system. He was talking about the lack of respect for our own “agency” as people with psychiatric or other disabilities.
“Agency means to use your own capacity, as a human being, to act and impose your actions onto the world and not just accept what happens to you.” (Quote from Wikipedia definition of Human Agency.)
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To understand how important choice is, we first have to come to terms with our own “agency.” That is, we are to be the actors in our own behalf. We are to act on our right–no, our responsibility to choose for ourselves from the options available in our lives.
Fancy words. But the reality is that all to often, we yield our agency to others because in times when we have not been well, we have felt so ineffective and we have often given up not only on our own abilities, but on our own value!
In North Carolina, it is time for us to become agents of change–that is, empowered agents of ourselves! What does this mean?
- We need to assert ourselves to become more informed before we make decisions. Uninformed consent is really not consent at all, but mere submission. And submission doesn’t usually lend itself to a sense of growth or well-being.
Are you pleased with your provider? You can ask for a change. Do you have concerns? You can address these with staff. Are you being assigned several servcies from the same provider, yet you’d like to get some of your services from a second provider? YOU HAVE THIS OPTION! Even if your LME or your provider acts hesitant, these options are yours. They will start responding more to us when we start stating our expectations of them–with respect due to them as people.
- We need to ask questions of those who are to help us live better. We mustn’t let our service providers or our doctors assume agency for us! Remember, agency is a foundation to personal empowerment in our relationships. Become and remain your own agent!
Does your psychiatrist truly hear what you are saying? Does he or she give you medication that impairs your ability to function so much that it depresses you? Have you ever made a list of questions or concerns that you can share with him or her? Remember, you have the right to appropriate care. Require it!
- We need to establish clarity in our relationships with providers and others in our lives who may inadvertantly or deliberately threaten our sense of agency. We must own our right to set boundaries and to define our role and our responsibility in these relationships.
Do you feel your provider addresses you based on assumptions about you rather than on who you are and what you hope for? Time to interrupt the conversation to establish realities about yourself, your experiences, and what your goals are.
There has been a bit of work done on the issues of shared decision-making in relationships and on how to shift the power so that it becomes equalized. I hope you might find some of the links below helpful!
Most importantly, our services and our personal relationships will be much more rewarding and effective if we support each other to step forward into the future together! We have nothing to lose, and everything to gain by leading our lives instead of subjecting ourselves to those who would try to lead them!
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GREAT TOOLS to CHECK OUT!
- Express Yourself! Assessment of your self-determination
http://www.cmhsrp.uic.edu/download/sd-self-assessment.pdf
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Raising Difficult Issues with Your Provider
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Personal Medicine Worksheet by Pat Deegan, PhD
NC CANSO 