An Apology

We are sorry for all the weird updates. In trying to meet the increasing needs of our members, we made a technical change to our website. The developer did not tell us it would create so many notifications. We are learning to ask questions before the changes happen.

WikiImages / Pixabay

Thank you for your trust. Again, we are sorry for the trouble.

Seeing Each Other

One of my coaches shared the Thomas Hübl video (below) with me. As I watched it, thoughts of the Peer and Caregiver Networks flooded my mind. While we have yet to announce Network Coaching, this sense of seeing each other is what I think is at the heart of that work. Here’s a version of this understanding with which you might be familiar:

Here’s Thomas Hübl’s take:

We need each other.

Which Are Real Disabilities?

Part of the problem with the word ‘disabilities’ is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can’t feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who aren’t able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities.

Fred Rogers

Feeling the Needs

About 4 million people are watching Katie right now. Funny that neither she nor they are consciously aware of the attention.

Many, many needs of the Peer Network have been deferred, most for very good reasons. However, unmet needs don’t really care if the reasons are good or not. They remain unmet.

And things are changing. We are witnesses of the turning to these needs. It is coming down on Katie harder than anyone else at the moment. She’s feeling it. The formation of The International Spina Bifida Institute is no small matter in millions of lives. We are all feeling it. How? We are all parts of networks — and the networks are a part of us.

We hope you will join us in seeking to understand and address the needs of the Peer Network and those of the Caregiver and Professional Networks. Many hands makes light(er) work.

Chip Stepping Up and Stepping Down — at Exactly the Same Time

Copyright Katie Nowacek

While it may seem a little early 🙂 I will be stepping down from whatever TISBI leadership roll I’m in on January 22nd, 2022. Beyond early, you might find such an announcement at this point strange or right or wrong or brilliant or inappropriate or appropriate or sad or cause for celebration or or or…. I look forward to discussing it with you. Through a conversation, I think you’ll find my planned departure helps TISBI grow quickly and on a solid foundation — and I’ll learn just as much. Though our discussion will be the most valuable, I will share this from Jay Hughes:

One of [Jay father’s] favorite lessons came from his experience as a member of several boards of directors. When a new chief executive officer had been elected, my father said, “I would go up and shake the new CEO’s hand and offer congratulations. He or she was naturally excited and feeling hugely successful since, in most cases, election as CEO represented the most significant event of the CEO’s life and the culmination of years of very hard work. I would then immediately ask, ‘Who is your successor?’ There would be a look of surprise, and then, in the cases of the great CEOs, deflation, humility, and comprehension took the place of elation on their faces. After all, the most important role in the management of an enterprise is arranging for orderly succession.”

James Hughes in Family Wealth: Keeping It in the Family–How Family Members and Their Advisers Preserve Human, Intellectual, and Financial Assets for Generations (Bloomberg)

Number of People in the Peer Network

“Crowd” flickr photo by James Cridland shared under a Creative Commons (BY) license

Best guess at the moment is 4 million. Here’s the current math:

(Ancient CDC Spina Bifida Population Number/Current US Population)*Current World Population
(184K/325M)*7B is approximately 4M

We are sure this is way off. Central to TISBI’s work is to get better numbers. Anyone have better stats? Please share them. If you are on the same quest, we’d love to work with you.