How did I get here?

With a laundry basket on my hip or a brief case on my shoulder, I’ve looked longingly at the laptop during the last couple of months. I just haven’t been able to squeeze it in. It feels so good to be back again. It’s hard to know where to start, so I’ll just dive in.

Last week I was sitting in the waiting room of my Congressman, Michael Capuano (8th District, Massachusetts, US of A). As I sat on the sofa in his waiting room, looking at all his Boston bric-a-brac (baseball caps with college logos seem to be a favorite), I had one of my surreal David Byrne moments; just like in his classic Talking Heads’ song, I found myself wondering, “How did I get here?”

Fifteen years ago, Michael Capuano was my mayor. I didn’t know him then. I didn’t care about politics, especially local politics. I wasn’t a home owner, didn’t have kids in the school district, didn’t care about property taxes. I was a true civic deadbeat. I don’t even know if I voted in local elections.

My, how things have changed. Last week I sat on that sofa with sweaty palms, waiting to be meet with  his chief of staff to encourage the Congressman to support House Resolution 3423, the ABLE (Achieving A Better Life Experience) Act. The passage of this act would make it possible for my son, and lots of other people with disabilities, to be able to have more than $2000 in a savings account without risking losing social security and medicaid benefits, which he will surely need as an adult. Right now, most folks with severe disabilities are living in enforced destitution in order to qualify for benefits like healthcare and housing assistance.

While that doesn’t answer the question of how I’ll find the money to put in the savings account, to say that the passage of this act would give me peace of mind doesn’t even get close this act’s significance. The passage of this act would let me and lots of parents like me feel a little less afraid to die. 

So I’ve gone from not caring at all about politics to caring a whole lot. Does that make me selfish, or full of  self-interest?

Perhaps. Probably. Maybe there’s some nobility at least in spending time trying to change the rules on everyone’s behalf rather than using that time to sit with a financial planner in some office somewhere finding loopholes that would benefit just us.

But what struck me more than that in that moment was the very strange feeling that while this was not what I had planned for my life, Life had more in store for me than I ever imagined. Once again I have to ask myself the lovely words of Pema Chodron: “How did I get so lucky to be awakened to others and their suffering?” Maybe it is only in this awakening that we become politically activated. At least, it was for me.

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About Cristin L.

Earthling, pilgrim, peace warrior and special needs parent
This entry was posted in special needs parenting and tagged , , , , , , , , . Bookmark the permalink.

10 Responses to How did I get here?

  1. Debra says:

    I think the progression you describe, from civic deadbeat to political activist, is a very positive one. How many civic deadbeats never make that shift? Also, it makes sense to me that you would become more interested in government as you age; after all, that’s when we all have more needs in terms of government services. Please be kind to yourself. And, Go, You! for meeting the Congressman. Last, thanks for opening my eyes to ABLE – I wasn’t familiar with that before.

    • Cristin L. says:

      Thanks for your support. I’m not feeling unkind toward myself, just aware of the connection between our needs and what we ask for, and how when we’re really privileged and don’t need anything, we can be a little lazy. I feel pretty empowered, actually!

  2. Diane Engelstad says:

    Don’t doubt for a second that going after the public support you need for your son is anything but a civic act on behalf of us all. To even find the time to step out of your family’s immediate circle of need to go meet with a politician took considerable coordination and dedication, keeping you from some laundry and blogging I suspect. That’s actually huge! So thanks.
    -Diane
    P.S. I look forward to reading your blog, much like opening a letter from a good friend.

  3. Cristin L. says:

    Diane, what a nice thing to say. Yes, it’s true, the trip to DC is part of a disability fellowship that has kept me very busy this year–the dishes are piling up as we speak! Ironically, Congressman Capuano and I are both back in Somerville this week; if I wanted to, I could go around the corner to see him. But walking the hallways of Capitol Hill was a memory I’ll cherish for a lifetime!

  4. robin kramer says:

    We are so lucky to have you. Love reading your blog.

  5. Jill says:

    All I could think of when I first read this entry was the old adage that “the personal is political.” I think it’s a personal connection, combined with knowledge of how to interact with the political system, that is the catalyst for change. Your other choices are to do nothing or to just clamor outside of the system, damning it for being the way it is without thinking you might be able to change it. However frustrated and disgusted I get at how politics works (and doesn’t), there are those fleeting moments of seeing democracy in action and influencing policy in ways that will help kids and families that are more powerful than those bad feelings. I am so happy for you that you have been awakened in this way – it’s painful, but empowering, as you say. Sending you much love.

    • Cristin L. says:

      Yes, those fleeting moments. The fact is, progress has been made and continues to be made, but requires input. I think it’s intimidating and confusing to start, but then it feels like the most natural thing in the world.

  6. laurimedeiros says:

    I truly belive that: you so get a say in how your life goes.
    (and your loved ones or a population of individuals)
    But you may actualy have to say it… to everyone you can.
    Let those who have ears … hear!

    • Cristin L. says:

      You and Susan were my first teachers, showing me that sharing my story is my obligation and salvation. Thank you for opening this door for me.

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