MIA'S SPACE: Focus on the Truth

By Pat Nobbie, PhD, Mia’s mom

Every once in a while, universes converge – in a short span of time, the same message emerges from multiple sources and this is both unsettling and confirming.

In October, I was in Athens for Mia’s birthday, and it was magical. She met the UGA football team and got her picture taken with quarterback Jake Fromm. Laura’s third baby, Tate, arrived in the wee hours just after her birthday and she held him in the hospital where she works when he was just eight hours old. We gathered all her friends at Applebee’s for the traditional birthday dinner; and attended a costumed fall festival with the families she has grown up with.

It was at this event that another mom and I had a conversation about “what to do?” What to do about the young people who surrounded us at the festival who wanted jobs, wanted to move on from their parent’s homes, knowing there was a multi-year waiting list for any type of support from the State? Could we do it ourselves, she wondered? Could we work with someone to start businesses, figure out shared living, and not wait on the system?

Not too much later, I was at the TASH conference in Atlanta and heard the same message from Rod and Ann Turnbull as they shared “truths” from their son’s well-lived life.

Ann’s message was to pick two or three truths and focus on them. As parents, we often don’t get the luxury of selecting what to focus on – things happen and we deal with them. But this message, following on what my mom friends in Athens wonder, and then reaffirmed with what another group of mom friends presented at a TASH session called “Advocates, Leaders, Friends,” reinforced what I already believe. But it was equally unsettling because it challenges us.

Here’s the thing. WE KNOW WHAT TO DO. We know how school inclusion works and why it is so valuable; we know how to create community around people; we know the most successful employment practices. We know the barriers imposed by outdated policies and regulations and how they should be changed. We know how even a little financial support can go a long way to supporting people to have “an enviable life.” And, we actually know how good practice and some investment saves money in the long run.

What’s unsettling is the inertia of the administrative and political systems. Over my years of work, I have alternately advocated for systems to provide what people need and done an end-run around them. I suppose we will always have to do both. Not everyone has activists in their corner. And innovations need system support to be sustainable.

So as we go concurrently into the 2018 Georgia Legislative Session and the next round of Congress, recognize system impact and don’t lose your capacity for outrage. Choose another “truth” that has meaning for you … but, don’t postpone joy.

Happy New Year!

10 Truths from 150 (or 200) Years or So of Our Lives

  1. Seek an enviable life.
  2. Expect the unexpected.
  3. Create your own village.
  4. Go boldly into the unknown.
  5. Be accountable for the whole life.
  6. Breathe some.
  7. Recognize system impact.
  8. Never lose your capacity for outrage.
  9. Pursue dignity diligently.
  10. Never postpone joy.

Credit: From Ann and Rod Turnbull’s Keynote at TASH, 12.14.2017, (loosely recorded!)

To read more in Making a Difference magazine, see below:

Download pdf version of Making a Difference Fall 2017    Download Large Print Version of Making a Difference Summer 2017





Tags: GCDD, Making a Difference, Mia's Space, disabilities,