Mia's Space: Time Travel
In the past two weeks, both Mia and I have had time warp experiences. Mia’s experience was with the US Postal Service. Mia happens to be a person who still sends actual, paper birthday cards … not through virtual, email or Twitter, but real, live, put-it-in-the-envelope, lick-the-flap and put-a-stamp-on-it birthday cards.
Although she is quite aware that she is mailing the cards, her idea of delivery time is more in keeping with the time it takes to send email. In her mind, the minute you put the birthday card in the mailbox, it instantaneously arrives at its destination. On March 4, my birthday, Mia put the card in the mailbox at 8:00 AM, and at 8:30 AM, she called me to ask me if I got it. She also has a great deal of faith in the postal service for knowing the identity of her relatives.
Here’s the envelope of the birthday card she sent to her grandfather – she texted me the picture. And here’s what my birthday card envelope looked like (see upper right pictures). The addresses were not really correct according to the style guide, but most of it was there, in the top center of the envelope. The stickers are probably a bit distracting, but both cards arrived, to our great delight.
My time warp experience was a little more serious. I opened The New York Times one day last week, and there was an opinion piece advocating for the return of “Humane Asylums.” After that, I was forwarded articles about the “New Housing Concept” emerging for people with disabilities – a gated community of over 100 two, three and four bedroom apartments contained on a campus surrounded by a secure perimeter, specifically for people with intellectual disabilities. Despite our advocacy efforts, changes in law, US Supreme Court decisions, Medicaid rules and individuals one-by-one showing us how it’s possible to live in the community, we still regress to a “herding instinct” – as one of my colleagues put it. Put everyone together. It’s easier to monitor them and keep them safe.
I’ve written about this before – remember my analogy of the “community of blondes?” As a parent, I understand the potential for a loved one’s life situation to spin out of control suddenly. Despite the fact that many people think Mia is “easy” and not like the individuals that cause states, agencies and parents to create or support more structured environments, hardly a week goes by when I don’t have a “clutch” moment when I think that I am going to have to move back home for Mia.
What supports me to support her is her extended community – the family she lives with, her friends, the church, her co-workers and the neighbors. Even after Mia’s dad passed away, several people approached me to make sure I wasn’t considering moving her to DC. Mia has a life – her own life. I have to believe this is possible for just about everyone. I have to believe it is the responsibility of all us who do this work to promote provider development, funding and policy changes – and surround people with the connections necessary to build their capacity in the community. We have invested too much already. We cannot go back in time.
by Pat Nobbie, PhD, Mia's mom
