Playing for Change

What I loved about this video is that musicians from all over the world are playing the same song. Giving the same message. Gritty to sophisticated, washboards to violins–it’s the same song and message.

Kind of like all the people who believe in inclusion are playing the same song and giving the same message.

Kind of like all the people around the world who are working to make the world an inclusive place for ALL people, including people with disabilities.

The Inclusion Network

Check out The Inclusion Network (click here) hosted by Jack Pearpoint. There are many friends there from TASH, Arc, and advocacy days-gone-by who have stood by me and other parents of people with severe disabilities. Just a few are: John O’Brien, Connie Lyle O’Brien, Barb McKenzie, John McKnight… and Gail Jacobs, who shared the above video.

Standing with One Person–and Many

Our 35 year journey toward Inclusion has been long and hard. And when we look at Aaron’s current life, we don’t seem to have made much progress. We’ve done three MAPS and person-centered-plans but they just ended up in Aaron’s chart with a bureaucratic check-mark that they were completed.

We continue to do all the right planning, we take the right risks, we fight like the devil to get good programs, we attend countless meetings, join the right groups, and work with strong visionaries to build a better world for all people with severe disabilities. But it’s not enough.

The journey continues with every breath we have in this life but unless Aaron dies before we do, we need to plan for an extended journey that continues indefinitely after we are gone. We make our choices and face our battles: the big ones, the little ones… we accept the compromises we have to make to survive. We keep believing. There is no other choice.

We stand on the shoulders of the parents, self-advocates, caregivers, teachers and advocates who came before us and bought our opportunities with their sweat and blood. We continue their work. We attempt to build a inclusive community which has never existed in the history of the world…and then we will pass on this legacy to the next generation.

When all is said and done, we can hold our heads high and shout to the world, “We stood together for Inclusion.”

Our family stands for Aaron in our community. Across the world others, in their own way, in their own community, with their own child, or friend, are also standing for Inclusion.

And each day, we touch the life of one person–and many. We make things a little better than they would have been without our work for our one person–and many. And that gives us hope and is our life work.

So thank you dear friends. Thank you, also, to all the people who are reading this who I have never met but who are working for an inclusive world where everyone belongs.

Thank you for standing by me. Thank you for standing by Aaron. Thank you for standing by all of us. God Bless.

Add your voice in the comments:

Who are the people who stand by you?

Keep Climbing: Onward and Upward

All my love and gratitude,

Mary

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