MIA'S SPACE: 14 Years of Lessons

by Pat Nobbie, PhD

Making a Difference is taking a new direction, so this is our last Mia's Space. Two thousand words a year, for 14 years, have managed to capture our experience as a family living, learning, laughing and occasionally crying with Mia pretty well. So many positive changes in disability policy and practice have happened in her lifetime. But, we are in danger of losing this progress - from forgetfulness, from lack of vision, from resource scarcity. Here are some things I want people to remember about Mia's story.

First, despite what people may think, I don't have all the answers. There were lots of times I had heart-dropping moments, no clue what to do next, doubted my decisions, went totally on faith and if nobody got hurt, took a deep breath and went on.

Second, I fully appreciate that Mia seems "easy" and other families have a much harder struggle to keep their lives on track - the fact that I was sometimes challenged with someone easy to support is indicative of how much work we need to do to support families better.

Third, Mia's great life is the result of all of us looking outward - expanding her experiences and inviting others in. She has her own space that is easy for her to manage. She has a job that she loves with a hospital staff that looks after her, enjoys her, and invites her to social events, to which she also contributes.

She is a Sunday School teacher, and a few weeks ago, I attended a teacher appreciation breakfast with her. I heard from staff and children alike how valued she is. She has friends that check in with each other regularly, attend each other's milestone events, have sleepovers, dances, karaoke, go to swimming and bowling. She is in so many spaces in her community that if she doesn't show up somewhere she is expected, within 15 minutes I am getting a text, "Where is Mia? Is she late? Sick? Away?" These relationships are what keep her safe, and me confident in that safety.

Fourth, her consistent support - from the Whitakers whom she lives with, Fabersha who has been a companion since high school, Celandra, her support coordinator to Briggs and Associates employment support. Knowing how well these folks know her, have their own relationships with her, is invaluable.

Fifth, I have a community. Too numerous to name here, but I have other moms, friends, colleagues and professionals from all walks, and sometimes total strangers that make me think, encourage and challenge me. Eric [Jacobson] always supported me to have a family life and to bring the challenges into work so we could make things better. I've often said that I've watched Mia out there in the world, saw what needed to happen and worked on it, but that she never got to benefit from anything I did at the Council. She was always ahead. But, I couldn't have done Mia's Life without MY people.

It is so hard to sum up 14 years of accumulated experience, but I think Beth Mount said it best: "We have to make a world that works for everyone. Everyone means everyone. And everyone NEEDS everyone to make it possible."

Bye for now! Thanks for reading!

Pat and Mia

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