Monday, September 26, 2016

'Advocacy is draining:' A reader responds

A couple of weeks ago we launched the latest in our A Family Like Mine video series: 'The children that we have... they're just as human'. Terri Hart-Ellis, (above left), mom to Addie (right), who's in Grade 7 in Milwaukee, Wisconsin, posted this fabulous response. Thank you Terri!

She speaks truth.

She admits for me something I don't often admit to myself. And sure as hell not to anyone else. I fear it smacks of complaint, that it might fuel the very prevalent wrongheaded belief that people with disabilities are in any way a burden.

My daughter is my daughter and I mother her the best I can because I love her. That is true of both of my girls. Because they are mine.

But advocacy is draining, as she states here. Decision fatigue is part of my every day.

How do we approach this homework? What words do I use to challenge this approach at school while still preserving collaborative relationships? Is this enough therapy or too much? What vocabulary does she need for this trip to the grocery store?

Do I accept that stare and move on because I'm tired, or do I have the energy to clarify what it feels like to my family? Do I facilitate an interaction here with this acquaintance of Addie's who is ignoring her, or just let the opportunity pass.

When do I start talking to the next level of school about how we don't do segregated education or alternative anything? Should I use this five minutes I have programming her communication app or calling the medical supply company again? What accommodations does she need for 7th grade camp and how can I know the answer to that, never having been to 7th grade overnight camp?

Not a whine, not a plea for pity. Just a rare admission. I think this woman's articulation of many other beliefs I have about disability being a full human experience and not a lesser one, along with her comments on the drain of advocacy made me understand both things can be true. It makes days rather solitary for a variety of reasons. And while I know how to make the most of solitude, sometimes there is just too much of it.

Terri Hart-Ellis


I think Terri should get an award for the best blog comment ever. She's so eloquent and so real and I want her to know: I see you, and I feel this too. The constant balance that this beautiful messy life demands from us - the good and the bad, the joy and the pain.. all this FEELS so much deeper to me with my third child.

I'm re-reading Elizabeth Lesser's 'Broken Open' and in it she says:

You can work to ease the ills of society
and at the same time
you can love the world
with all its sorrow and beauty
you can be led by quiet joy.

I propose that we all lead by quiet joy together. Thank you, Louise and Bloom for connecting us together.