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!)

Patti writes one of my favorite blogs, 37 days and her book from the blog, Life Is A Verb has just been published.

* 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.

Thank you, Patti!

Book Review: 37 Days and Life Is A Verb

Once upon a time there was a blog that became a book… and it was magic!

I have mentioned many times here my enjoyment of the blog 37 Days. Written by author Patti Digh whose resolve to live intentionally and record her heart for her daughters was steeled by her stepfather’s death which happened 37 days after his diagnosis with lung cancer in 2003.

Well, some of Patti’s wonderful, thought-provoking essays are now a book: Life Is A Verb. Not only a book, but a BEAUTIFUL book, full of artwork contributed by her readers, inspiring quotes and more.

Patti has a personal commitment and makes her living making the world more welcoming for diversity of all kinds—and yes, she does include the disability community in this. She served on the President's Committee on Employment of People with Disabilities when Bill Clinton was president and has written essays and tips for respectful presentation of disability. While her essays aren’t mostly about disability, her words on being intentional and inclusive, speaking your truth, and making a difference are both challenging and heartening for all.

Writing a proper review of this book is actually pretty difficult at this moment because this book is made for savoring and reflection and I am resisting rushing through. The book is interactive with wide margins intended for writing and exercises for deepening connections. (And yes, for my friends who know about my Pristine--with a capital P--book obsession, I am writing in it!)

Not only is this book is full of life-lessons to share with our children and each other. I think it contains a sustainable approach to advocacy. An approach that includes care for self and for others and contrasts starkly with the adrenaline charged confrontations many of us know and fear. It’s almost a mentorship.

I love it and I think you will too! Head over to 37 Days to see where Patti Digh will be doing a reading near you and to see the other blogstops on her tour. And check out my next post--an interview with Patti Digh (yes, she really answered my question--how cool is that??)

Well, thanks for stopping by my little corner of the blogosphere. Come again, we never close!

Xenagogue--Disability Leadership That Works

I am just going to admit it, the letter x stinks as a writing prompt! I learned this word from my favorite (nearly) daily read, the blog 37 days by Patti Digh.

Xenagogue is an excellent word though—it means guide. This mode of leadership is one of the biggest strengths of the disability movement.

Throughout my daughter’s life it has been the parents of other children with disabilities and my friends with disabilities that have showed me the ropes—in so many ways.

The day after we got home from the hospital with our new little baby I placed a call to the National Down Syndrome Society. It was a mom that answered that phonecall and gave me the number of my local organization.

I then called our local group and it was a dad whose first word to me was “Congratulations!” (a lesson in itself!) By the end of our conversation he had given me the schedule for upcoming meetings, had asked if my daughter had been seen by cardiology yet, and had asked if I had been in contact with the folks in our county who administered Early Intervention. That call, that dad set us on the path we are still on today.

Parents taught me about Down syndrome, about which programs in town were good and which books I should read next. Parents taught me about the laws and advocacy skills I would need to help my daughter succeed. Parents and friends who have disabilities asked—and continue to ask—the questions that keep me and my family growing and learning.

Parents and self-advocates teach each other to access systems, find supports and develop creative ideas.

Few other folks understand the truly individualized nature of the lives we live. Systems often attempt to ‘bulk’ our kids, trying to assign our kids’ supports based on the system’s capacities or values, rather than on the reality of the individual child’s own circumstances.

Systems often try to implement a “Down syndrome plan” or an “autism plan” for example.

Parents, on the other hand, understand that Down syndrome (and any other diagnosis) has a group of symptoms, and that those symptoms play out differently in each person. While data received from the experiences of others contributes to building each child’s plan, so does the needs, strengths and situation of the actual child.

As a nurse I was prepared by my training for this.

I know many things about appendectomies, for example. I know about incisions, medications, complications, lab results, pulmonary hygiene etc. I must incorporate all of these things in the plan of care for a person who has had an appendectomy. Yet every care plan I make will be different because I must also adjust my plan according to the actual situation of my own patient.

If my patient is very old or very young, has heart disease or diabetes, is pregnant or is HIV positive, has a supportive family or no family at all, or any of a thousand other possible variables, my data-driven plan must be adjusted to be effective. Applying scientific knowledge in an individualized manner is what nurses do.

In the disability world it is usually parents and self-advocates that make this individualizing happen.

Self-advocates and parents “get it.”

We are great at talking to each other.

In a much lesser way parents and people with disabilities reach out to people who do not have disabilities to share the disability experience with them. When we take the role of guide with folks beyond the disability movement understanding grows.

Last weekend in Washington I went out to dinner with a bunch of people, with and without mobility disabilities. As our friends’ guided us from elevator to elevator through the subway system of DC we all learned lessons about accessibility that will be food for thought for a long time.

On a larger scale laws like IDEA and the ADA exist because people with disabilities and parents worked as guides with lawmakers to build recognition of the disability experience.

While the role of the superhero in disability leadership gets overplayed, the role of xenagogue has room to grow!

Beliefs

All generalizations are false, including this one.
Mark Twain

(I just love Mark Twain!)

A few years ago I worked with a patient whose goal for treatment was that she would return home. The problem was that she had several significant medical issues, lots of complications and was struggling in therapy. It was the belief of our medical experts that for her, going home would be unrealistic.

The other problem was that she and her family were immovable. We were not to lower our expectations or change our focus from rehabilitation to maintenance—she WAS going home according to them.

To their credit the staff didn’t hold back. All therapies were delivered fully, all options for equipment, medical interventions and community supports were thoroughly explored and implemented. We pulled out all the stops because we really are patient centered folks, but all the while we were shaking our heads and telling each other that we just KNEW this was not going to work.

After a couple months of this a care team meeting was held…to discuss…drumroll please…DISCHARGE HOME! And as far as I know, this woman is still living home today.

We, the experts, were wrong (and maybe just a little arrogant!)

Not only were we wrong, but if we had been a different type of folks and had not placed patient-choice above our own beliefs we could have done some serious damage. We could have enforced those beliefs and through our actions and inactions created a never-going-home reality for her—a horrifying thought.

I have a friend who has an 8 year old son who has Down syndrome and some autism-like features. At home he is a very capable little guy.

He rides his bike independently on family outings, looks up Netflix selects and starts movies on his own. He uses his communication device to communicate not just that he likes the movie Cars, but why he likes it. He also easily swims the entire length of their pool over and over, plays with his sister and their friends and reads independently, to name just a few of his skills.

At school it’s a different story: they limit the use of his communication device to expressing needs, they insist that all of his work be hand-over-hand with an adult, they punish him for behavior that the other children are allowed to do (most recently he was dragged down the hall by two adults for trying to high-five his little sister in the hallway—a common greeting between siblings, neighbors and acquaintances at that school), they exclude him from opportunities to learn background knowledge (and then criticize his literacy ability based on low background knowledge,) and exclude him from opportunities to practice more mature social skills (and then punish him for having lower-level skills) among other atrocities. They do all of this because it is their belief—all evidence to the contrary—that this is what he needs.

This child is being disabled, not by his chromosomes, not by his diagnosis, not by his capacities or skills or potential. He is being disabled by a group of people who are enforcing their beliefs about what his life should look like and through their actions and inactions are creating that reality—at least at school.

His friend’s mother was watching them play the other day and exclaimed to his mom, “Why, if he didn’t LOOK like he has Down syndrome, they would be EDUCATING him!”

This is probably accurate and it’s heartbreaking.

It is difficult to be around people who are different from yourself without stereotyping. The world is full of racism, classism, age-ism, etc, etc, etc—clearly this is a human flaw. And sadly adding a layer of expertise can, instead of expanding our knowledge of possibility, just solidify our prejudices and give us the power to enforce them.

Since expertise is not a defense against limiting beliefs, what is? Patti Digh in her blog 37 days (can you tell this is a favorite??) suggests Unlearning as a first step.

In addition to a healthy dose of unlearning I would add something I read from an article called The Least Dangerous Assumption. Written by Cheryl Jorensen, Ph.D. and published in Disability Solutions in 2005, the article quotes Special Education researcher Anne Donnellan who says, “the criterion of the least dangerous assumption holds that…. educational decisions ought to be based on assumptions which, if incorrect will have the least dangerous effect on the likelihood that students will be able to function independently as adults.”

The article goes on to illustrate the different lives that a limitation paradigm and a least dangerous paradigm could create for the same child. The comparison is compelling.

Those of us in healthcare and education are in decision-making positions nearly every day. We need to Unlearn the portions of our expertise that create limitations for others and make the least dangerous assumption.

figuring things out

I have been inspired to return to this blog--hopefully on a more frequent basis--by Patti Digh at 37 days (ooooo, i just figured out how to make a link!!!!!!) Her H is for Human Rights post from the other day made me realize I need to stay on the horse and this is something I could be doing that I'm not (it is on her front page...don't know how to make a link for a specific post yet...)

I am following her alphabet series idea on the idea that it will bring me to the computer regularly... I hope you enjoyed A and tomorrow will be B...

I think I am going to go back and add links to my last post. Now if I can figure out if there are pictures I can use or if I have to get camera-proficient too....

It's a learning experience!