My Road to Advocacy

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Shared from inMotion  |  Volume 28, Issue 2  |  March/April 2018, Page 26

by Herb Kolodny

Herb Kolodny and fellow graduate from Partners in Policymaking, Tara Frey.

I was asked recently: “How did you become an advocate?” “Good question,” I thought. As a new above‑knee amputee, I had no ambitions to be an advocate for anybody but myself. I simply wanted to return home and go back to work.

However, two short months after my amputation, the trajectory of my life changed. I was asked to meet with a new double amputee who was down in the dumps and wasn’t interested in getting better. Frankly, the thought was a bit frightening, especially because I didn’t even understand all the jargon. What’s an AKA? What does bilateral mean? Why me? I reluctantly agreed. I wondered and worried. What was I going to say?

As his family transferred the man into a wheelchair, I went to greet them. I noticed there were three sets of eyes riveted on my shiny new C-Leg and not me. The questions started before we even sat down. Replying was a relief. It meant that my secret (the fact that I was clueless about what else to say) was safe. The peer visit was a success.

Step One – What had not been noted until now was the transformation that occurred to me. I became an advocate for someone else and it felt good. Really good. Only much later did I understand that when helping others, it heals oneself, too. I had taken my first step on the road to advocacy. All I could think about was arranging as many peer visits as possible. I learned quickly, however, that one-on-one peer visits were too few and far between.

Step Two – I shifted my thinking to activities that would reach many amputees at once by helping my support group facilitators. I developed forms to more easily capture new attendees’ contact info. Gently (I hope), I nagged them to send reminder emails before every meeting. And I never missed an opportunity to promote the group to new attendees. “Please return so we can celebrate your progress; soon, you will be helping others,” I told them. And it worked. In my early days, attendance was sometimes as low as two or three people. Today, the group averages 25 to 40 people. And not just amputees. Many loved ones attend, too.

Step Three – I promoted peer visits to my hospital. A group of fellow amputees and myself received peer visitor training and, once again, the one-to-many approach worked. More new amputees are being reached by peer visitors than ever before.

Step Four – When I was recruited to start a new support group elsewhere in the state I thought to myself, “These people don’t realize I don’t know what I’m doing.” I turned to others for guidance and when I was promised support, I agreed to do it, even though I had never done anything of the sort before. Today, that new group is nearly two years old and averages between 10 to 15 attendees each month.

“Each time a person stands up for an ideal, or acts to improve the lot of others, or strikes out against injustice, he sends forth a tiny ripple of hope, and crossing each other from a million different centers of energy and daring, these ripples build a current that can sweep down the mightiest walls of oppression and resistance.”Robert F. Kennedy
Brenda Novak and Herb Kolodny

Brenda Novak and Herb Kolodny, co-founders of the Connecticut Amputee Network

Step Five – I once contacted the facilitator of another Connecticut support group several miles away about a new amputee. During the conversation, she suggested that the six groups in the state would benefit from a liaison that cross-pollinated between them. I decided to do it. As I crisscrossed the state, I introduced myself as the new, unofficial, self‑appointed liaison. I made sure to always have new information to share.

Step Six – A flyer was emailed to me from Partners in Policymaking, a federally funded program run at the state level. Their goal is to train individuals with disabilities, or whose children are, to become legislative advocates. Thoughts of attending a seven-month program and learning how to chase after legislators was not very appealing to me. It sounded too much like work and too far from my main interest. I tossed the flyer. However, a month later, the same flyer was being handed out at one of the support groups. And this time, there was a hand still attached to it. It belonged to Tara Frey, a single mom with two active boys; she was an occupational therapist for children with developmental disabilities. Did I mention she was an amputee, too? How could I argue that I was too busy or that the work was unrelated? I went home, with the flyer, and thought about it. I discussed it with my wife to get her buy-in. I warned her that it would be a lot of work for me. I was right – and I did have to chase after legislators.

Step Seven – With the hardest work comes the greatest rewards. It’s been my pleasure to work with dedicated public servants at the state and federal level. I also found a collaborator, a fellow above‑knee amputee, Brenda Novak, who joined me in my advocacy work to bring me to Step Seven: the creation of the Connecticut Amputee Network (CAN). We are pressing forward with a state legislative agenda for 2018: the introduction and passage of an Insurance Fairness bill.

CAN ties together many of the previous steps. It also supports educating the state’s limb loss community, especially with respect to our legislative actions. It lets all of them and their loved ones know that they are not alone in this fight. A higher quality of life is possible if we work together.

One could say that my road to advocacy was a series of unintended consequences derived from the desire to help others. Unplanned and unexpected, my one-to-many projects have succeeded. It hasn’t all been up, up and away, though. There have been a few downs and sideways in the mix. But the overall ride has been very rewarding, indeed.

And how will your road to advocacy map out? Here are a few things to expect.

  • You can’t do it alone. Overcome your resistance to ask for help.
  • While helping others, it helps your own healing.
  • Life is a journey. So, why not travel the road to advocacy?
  • Everyone’s journey is different because each of us are different.
  • You will meet and make new friends along the way.
  • Our paths may cross one day. That would be nice.

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Published in inMotion, Volume 28, Issue 2  |  March/April 2018, Page 26