Keeping Uncomfortable

“Movements shouldn’t be about trying to sell the idea. Movements should be about recapturing the vibrancy, the heart, the energy, the love, the pain, the suffering. If we aren’t talking about pain and suffering along with our goals, then we’re not talking about the issue and at every moment we should be talking about the issue.”

Daniel Hunter, strategist at Training for Change and author of “Building the movement to end the New Jim Crow”

As our world (and each of us) struggles with being together, being as one, and wrestles with our fears and terrors over difference, diversity, and belonging, these words have great meaning for us.

This also strikes me as an issue at the heart of the work that many of us are engaged in to improve the position of people with disabilities within our society. For most of us, we entered this work to join a liberation movement – one which acts to create conditions where people with disabilities can lead and live good lives within a society that values them, welcomes them, and has a place for them.

These days, we dance a great deal with the idea of service from one to another human being as being a technology, a strategy, a method, even a “treatment”. These methods are a means, perhaps, to make good things like home, relationships, and belonging really happen. For example, social theory tells us that if we help people have valued social roles such as “good neighbor”, colleague, citizen, or beloved member of a faith community, then those good things are likely to flow.

Can you imagine applying those means to another person’s life without passion, without awareness of what it means to live with a low social status in our society, without understanding of the impact of continuous rejection as the most prevalent life experience that has formed and shaped some deeply wounded people? Where measures are taken in people’s lives without full awareness of the urgency, the danger, the call to action on behalf of a whole class of people who need, without doubt, privileged people to stand by with and for them, not to “do things to them”?

One of the roles that some of us must take on is to provoke and incite passion and even a bit of outrage at the segregation, congregation, and continued struggle that people with disabilities face at the hands of a society which, truth be told, has demonstrated and continues to demonstrate that it might prefer if they simply were not around, or at least remained unseen. Funny, but in these tame days, this feels a little dangerous to talk about. Discomfort is not valued in comfortable places.

Things are improving for some groups of marginalized people in most western countries – there are increasing actions towards wage equality, accessibility, full citizenship, and inclusion in nearly every area of life. Hard won, I should add.  This warrants celebration alongside people with lived experience of disability and their families. It also warrants keeping our sharpest eyes on and remembering that perhaps the hardest work is yet to come.

At this point, losing the fire is not only possible but before us, as we settle into services that seem correct, methods that seem not only OK but are data-driven, called best practice, and are highly regulated and supervised. Our clearest vision might be called for in this day and age, rather than the days when what we saw we KNEW was bad.  Now, the oppression is harder to see, easier to accept, and masked with truly good intentions. One of my most important mentors told me early on, no matter what,  “stay close to devalued people” – this advice remains powerful, and safeguards against my own complacency, always waiting in the wings. It also requires me to walk next to the pain and suffering  that lives alongside our goal.