Overtaken or working through?

Last week I wrote about how my professional and personal worlds are colliding now that I’ve started working for a project that advocates for kids (of all kinds, but especially with special needs) and their families in healthcare reform.

Sitting down to my journal this morning, I flipped back through the past few weeks and noticed that Disability — as both theoretical concept and a pragmatic reality — hasn’t just seeped into every corner of my life: it’s pushing out nearly everything else. It’s filling not just the huge blocks of time I think of as “work time” and “family time,” but even the small slivers of time in between, not just the thoughts but the space between the thoughts, permeating my consciousness from the moment I start journaling at 5am to the last few moments of each day I spend reading every night. (The book right now is required reading on the evolution of disability rights, I kid you not.) The many, many moments in between  —  checking email, talking to friends (often also parents of kids with special needs), planning for the future, running errands and making calls (picking up meds and scheduling specialist appointments) leave little time for other things.

The irony is not lost on me. In the process of trying to build a life unimpeded by the limits of disability, it looks as though it is taking over like a kudzu vine. In an effort to move beyond disability by becoming empowered by it, I have become ensnared.

It’s cause for concern. This level of immersion in the stories of others and their challenges leads to a sort of vicarious trauma that will surely lead to burnout. And surely no one feels like hanging around a walking protest sign. At moments I bore myself.

And yet… (yes, there’s always an “and yet….”) it strikes me that the seeming claustrophobia that Disability is playing in my life right now is in fact a cocoon; there’s no way for me to metamorphosize to the butterfly-hood that is a joyful, inclusive, authentic life without being held completely captive by this for a little while. In my struggle to break free, my wings grow stronger and eventually, when the threads of the chrysalis release me, I will be something completely different than I was before.

At least, that’s what I hope.

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Push it good

If you’re interested in media portrayals of disability, here’s a new one to add to the DVR list: Push Girls, a new reality show about four gorgeous, celebrity women who all use wheelchairs. Seems hot and sexy and real, which could be good. Or maybe hot and sexy and exploitative? We won’t know until we see it.

The Personal is Political is Professional

Many years ago I came across a refrigerator magnet in a quirky gift shop that I have often recalled since. On it, a line-drawn skeleton lies in repose in an open coffin; a thought bubble rising from his skull asks: “I wonder what I’m going to be when I grow up?”

To say I’m a jack-of-all-trades is an understatement. I’ve been a business consultant and a professional weaver. I’ve sold cheese and paté in a European capital. I’ve been a project manager at a translation company and I’ve sold art and antiques on the nation’s largest public television auction. I was the office manager at a textile conservation center that worked on Jackie Kennedy’s wedding dress and Babe Ruth’s baseball jersey and I conducted phone surveys of college students. The past twenty years of my professional life have been circuitous path.

While I am grateful for my broad range of marketable skills and my uncanny luck finding fascinating jobs, I’ve envied folks with a laser-like professional focus, able to immerse themselves in a body of knowledge and become a leader in an industry or organization. Most of all, I’ve envied those with a calling, with a joyful sense that their professional lives and personal interests are perfectly entwined.

Lately though I’m noticing that even in my own life, the lines between the personal and the professional — and even the political — are becoming blurred. My experience advocating for my son’s medical, behavioral and cognitive needs have actual street value, and I’m being paid to pull up a seat to the table and share what I know. The work, although not directly, is funded by policy which I in some insignificant way have tried to help sustain. Through this work, I learn of resources which will directly benefit my son and family. Suddenly, it’s all of a piece. And I like this feeling.

I’m not ashamed to say that I didn’t set out to do this. I don’t think most disability advocates did. We were all just out there, doing our thing, being a waitress or a salesperson or a book keeper, when along comes this wonderful child that changes everything. And suddenly, the Personal is Political is Professional.

Durga Tool #7: Google Scholar, as symbolized by Q

Here’s another in my toolbox series of techniques that inspire me to live with joy, compassion and courage, as inspired by the Hindu goddess Durga  — my nominee for patron saint of special needs parents.

Back in the day, when my son’s medical symptoms and developmental delays started slowly revealing themselves one by one, I received the following advice from several of his doctors:

Don’t start Googling.

While this advice may have been given for job security or to prevent a lot of “needless” requests for referrals, I think it was grounded in some compassion and consideration for my mental health. Medical information on-line is often: 1. hard to decipher, 2. dire and distressing, 3. contradictory, 4. controversial and predatory, 5. just plain wrong, and sometimes 6. all of the above. They suggested I take a more concierge/secret agent approach, bringing my questions to them and letting them feed me info on a need-to-know basis.

For years I was happy to comply. I was in full-blown denial, dysfunctionally optomistic, busy and exhausted caring for two small kids. The less bad news, the better. Consciously, I reasoned that they were the experts and if there was something worth knowing, they would tell me. I sensed that I could lead them down the wrong path and I didn’t want to be a distraction. But mostly I was in denial and content to stay that way.

But as my son grew and the picture got more complicated, the doctors started sending mixed messages. They’d start sentences with, “You’ve probably seen this on-line…” and “I’m sure you’ve already read about this on the internet….” What happened? It was as if policy had shifted and someone forgot to send me the memo.

At some point it finally hit me: I am ultimately culpable for my son’s well-being. No matter how many experts I recruit to our team, I am the one who will be held accountable and everyone else is assuming that I’ve got the big picture. (This insight is a blog post — or book or lifetime of practice — in and of itself.) I couldn’t stay away from the internet any longer, and a few years ago I finally gave in and started poking around.

You know what I found? Absolutely nothing useful. While medical websites can be slightly helpful when you know what to look for or if you have a very common diagnosis, my searches brought forth no fruitful results. I knew there had to be lots of academic papers from reputable journals out there, but my searches seemed to take me to useless sites that all seemed to be cutting and pasting information from the same vague source.

This fall, I finally learned about Google Scholar, a Google search engine that only searches academic and scholarly articles. I learned of it in a completely roundabout way; no doctor had ever shared it as a resource. (Why were you holding out on me, docs?)

In that moment, I felt like James Bond being given the cool gadgets from Q, the hidden camera in an average looking pen, the undetectable knives that shoot out from the wheels of my car when I press the cigarette lighter. And now, I give it to you.

What we do with that research — how to decipher it, how to judge its worthiness, how to not get overwhelmed by it — is information for another day. But in the mean time, here’s another tool for the toolbox.

Any other resources out there for evidence-based, sound research? I wouldn’t be surprised. If so, please share!