As we step into The Year of Voice and Choice, Artistic Director Matt Guidry reflects on Upstream Arts’ newest programming and training, The Art of Voice and Choice. Ranging from policy to personal, he unpacks some of the work that lies ahead:
First, a little history.
Nineteen long years ago, in 1999, a landmark Supreme Court decision, known as the Olmstead decision, affirmed the civil rights of individuals with disabilities. The ruling upheld the ‘integration mandate’ of the Americans Disabilities Act (ADA) of 1990 which requires that public agencies provide services “in the most integrated setting appropriate for the needs of the qualified individuals with disabilities.” Nine years after the ADA was passed the Supreme Court had to affirm what it said.
Ten years later, in 2009, the United States Justice Department decided it was time to begin enforcing the Supreme Court’s Olmstead decision in state after state because it found, in fact, that no state was really in compliance. Nearly twenty years removed from the passage of the ADA we decide we actually need to enforce it.
It wasn’t until 2015 that the state of Minnesota’s Olmstead Plan became official. This is Minnesota’s plan to ensure that people with disabilities are living, learning, working, and enjoying life in the most integrated setting. If you’re counting, that’s 25 years after the passage of the ADA and 16 years after the Supreme Court’s Olmstead decision. We finally have a plan.
For Upstream Arts, 2018-19 is The Year of Voice and Choice. Why? Because as a community we can, and should, do better in allowing individuals with disabilities to lead more self-determined lives. It’s not easy. Let me repeat, it’s not easy. And it takes practice. It IS a practice.
Over the last year and a half, we have been developing a programming and training we call The Art of Voice and Choice, exploring Person Centered Planning and Informed Choice (guiding principles of the Olmstead Plan). In addition to teaching vital self-advocacy skills to its participants, the program challenges educators, direct support professionals, program managers, administrators, family and caregivers, and most importantly ourselves, to think differently about how we provide support in a way that honors the opinions and life choices of the individuals we support.
Those of us that are caregivers become comfortable with making decisions for those we support. Sometimes it’s necessary. Sometimes it’s not. Personally, I really struggle with this as a parent of a young adult with disabilities, because there are so many times it is necessary. But we need to expand our ideas of when making decisions for someone is necessary, and when it’s a convenience or because we think we know what the best decision is.
Let me give you an example. While I was teaching a Voice and Choice class last year, a young man with disabilities asked me if, when I was 22 years old, my mother ever forced me to get off my computer and go outside. Because that was a decision that his mother made for him. She took away his computer mouse and made him go outside. My answer was, simply put, no. At that age my mother was not about to enforce her opinions on me in that manner. She might have expressed her opinion, but at 22 years old I was free to make those decisions for myself.
Maybe he did need to go outside. It probably was good for him. But if every parent made these kinds of decision for their adult children, no young adult would ever be allowed to take risks, to fail, and to learn. We need to find ways to give this space to individuals who happen to have a disability as well. We need to do this not only when facing big life decisions. We need to practice in the everyday, in ordinary situations. This is where the work begins.