Facing the Community

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Several years ago, at a conference on person centered planning, the session facilitator David Wetherow said, “We taught families to face the service system, all the while they had their back to the community.” I felt as though he were speaking directly to me.

Like thousands of other parents, I had invested time and energy in leadership trainings that taught me my role as a leader, that of facing the service system, fixing it, making it more responsive and inclusive through policy and law and lobbying for increase funding. Essentially, in this context, leadership is grounded in the belief that if systems work better, life will improve for my daughter and others. And so, like many other parents, I faced the service system head on. I advocated, testified, wrote letters and cried. But try as I might, I couldn’t change what was fundamentally wrong with most disability related systems and programs – they operate from a deficit model.

This deficit model drives the disability industry and, like a pyramid scheme, creates millions of jobs for professionals trained to spot, sort, fix, and remediate deficits. People with labels of disability are trapped in a never ending cycle of repair, services and poverty, often with little contact with community. Because I had been facing the service system, I was no longer aware of my own community, at least not in any meaningful way. Since that day of awakening, I’ve been trying to turn around.

And now that I’m beginning to turn and pay attention to what I’m seeing and hearing, I’m becoming more and more aware of community, learning what community is (and isn’t), reflecting on experiences, telling and listening to stories, and talking with others about what it all means.

I’ve learned that communities don’t really care about our deficits. Communities care about our gifts, our contribution. But, to learn this, I had to turn around and see it, experience it.

I’m not suggesting that leaders stop advocating for inclusive schools, meaningful support, housing, and employment. I am suggesting that we learn to turn, like those 360 degree virtual tours, so that we can see more fully what surrounds us. So, while we learn about systems advocacy, policy and law, we also learn about and renew our commitment to community, neighborhood connections, belonging, and membership.

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