reflections related to disability advocacy, family and (needed) cultural change
Thursday, September 25, 2008
Interview with Patti Digh author of Life is a Verb
You read the book review (go do it now, I'll wait) now read the interview:
Yes, I sat on the veranda sipping iced tea with Patti Digh while conducting this interview--at least virtually. (Actually I sent her and e-mail from my family room couch and if I was in my PJs at the time no one needs to know--lovely thing this internet. Though I would have enjoyed the whole veranda and tea thing!)
* I am a daily reader of your blog. Your focus on intentional, inclusive living really hits home for me. Do you feel your principles apply to people who are extremely busy or overwhelmed? Do you think intentional living adds value to any life? How? Where does intention affect burn-out?
I think being mindful is especially important for people who are extremely busy or overwhelmed. Otherwise, it's easy to be mindful, isn't it?
Most of us exist in a state of overwhelm. I know I do. In those moments—as in all moments were change is needed—we need to consider the possibility that the change that is needed is often counterintuitive. That is, often the change that is needed is the exact opposite of what we believe is needed. So, when I'm stressed and have too much to do, I believe the answer is to work faster and let relationships falter because I don't have time for them. What if the change that will help most is to slow down and foster deeper relationships instead?
* I know that in your professional life you work with companies to improve their diversity. Do your diversity beliefs extend to people with disabilities? How do you feel including people with (cognitive) disabilities affects organizations/communities? What do you see as barriers or possibilities?
I have been active in the disability community for a long time. As a former board member of many national disability advocacy groups and as a longtime member of the President's Committee on Employment of People with Disabilities, I am a vocal advocate for people with physical and cognitive disabilities. I've written a lot about inclusion as it relates to people with all types of disabilities, including the ways in which our language frames our beliefs about and engagement with people with disabilities. Speaking about wheelchair-bound people evokes a different sense of that person's humanity, for example, than does people-first language like a "man who is a wheelchair user." In the first phrase, a wheelchair is a prison and the person in it is believed to be a victim while the people-first language evokes a full human being who uses a wheelchair to move about in his or her daily life. It is significant, the difference. We need to move toward people with disabilities and ask them how best to engage with them rather than move away from them in fear that we will offend them. We need to see them as people first.
*Tell us about your work on the President's commission: Which president? What was the name of it?? How long? Who with? What were you able to do/learn? What surprised or affected you about this experience?
I participated for many years under Bill Clinton's presidency in the President's Committee on Employment of People with Disabilities. We worked on disability issues at a national level, looking for ways to connect employers with people with disabilities for employment opportunities.
What surprised me most were two things: one, that we are often advocates for those things that personally affect us. That is, the employers most open to conversation about employing people with disabilities were those who had personal experience with disability in their families. We must learn to be advocates for people simply because they are human and not because we belong to their group.
And two, I was surprised that the disability community—as huge as it is (our nation's largest minority group)—was so splintered as to be somewhat ineffective. It was a great example (and there are so many in our nation) of the ways in which we can lose focus on desired outcome or intention and focus instead on circumstance (my group's interests first).
* What do you share with your daughters about people with differences? How have your girls responded?
I realized a few years ago that doing corporate diversity training had no chance of being as lasting as raising two daughters who think and talk openly about difference. With each of them, we have engaged in frank conversation about difference, providing them with the tools (I hope) to walk toward difference and not away from it. It started with each daughter reading books about difference—for example, Todd Parr's vibrant books are a great resource—letting them understand what differences exist in the world and how they all provide perspectives that can enrich our lives. By now, Emma knows the signals that I'm about to haul out the flip chart and do a little after-dinner lecture on stereotypes…(smile). It is simply a part of the DNA of our family.
* How does intentional living change lives? Do you feel it has ripple effects in the larger world?
We often believe that change can only happen in large pronouncements. But I honestly believe that local simplicities—the choices I make each day about how I am with you and what I am in service to—are the most profound tool we have for large-scale change. Because I write 37days, I pay more attention. Because I pay more attention, I see meaning in more small interactions. Because I see meaning, I have meaning in my life and I believe that all other humans have deep meaning in their lives. I can extend the same level of humanity to others that I grant to myself as a result. That's big. That's meaningful. That's powerful.
* What are your insights about how gaps between people with disabilities and others can be bridged?
I think we hesitate to engage with people with disabilities because we fear we will offend them. "How does he shake hands?" we ask ourselves. "Can he speak?" we wonder. "Should I help him across the street?" we ponder. How on earth will we know if we don't ask? What if we walked straight into the discomfort? How might that change the quality of our engagement with the world, and theirs? Who better to tell you whether they can shake hands than the person with the disability? Why do we believe we must have all the answers? Sometimes, my friends, the answers are resident in others.
* You talk in your book about the importance of things like pancakes and fun. How do pancakes and fun apply to the life of the disability advocate?
When we think about the question of 37days to live, often the impulse is to radically change our lives. What I am trying to get at in my work is the opposite of that: what if, instead, we lived RIGHT NOW the life we want, so that when we get to that last 37days, we continue living that very same precious life, rather than regret the one we didn't live. What if we continued hoeing the garden we are hoeing in our last days and just punctuated those precious hours with more chocolate chip pancakes instead? What if we played life as an infinite game, one we play to learn, as opposed to playing life as a finite game, one we play to win?
*Are there any questions you wish I had asked or is there anything else you want to say?
Terri, my thanks for your big, important work in the world and for participating in the Life is a Verb Blog Tour.
I am the mother of three, wife of one. I am a Partners in Policymaking graduate and a committed disability advocate. I want to catch up on my scrapbooking, learn more about art-journaling, get my house in order, read all the books I have set aside to read and change the world--not necessarily in that order. The opinions in this blog are my own and not those of any of employers.