“Winners never quit, and quitters never win.”
~ Vince Lombardi
Our march to congress in Washington D.C. this year was powerful, fun, productive and exhausting!!! I can’t wait to tell you how successful it was, but first things first!
Thank you to the Event Planning Committee for all your hard work putting this conference together: Gwen Riechmann, Kqasha Ananta, JoJo Calora, Daleena Downing, Jan Garrett, Lori Kay and Paul Koneczny. Here are the main takeaways:
Saturday and Sunday – Some of us arrived early and that’s when the trouble started! The biggest debacle at this point was Jan and Dan Garrett being stranded at the airport for two hours waiting for the ADA shuttle that never came. Gwen’s van, driven by her niece Amanda, rescued them after a ball of confusion and no resolution from the front desk. To save time, here are some examples of hotel fails: Not enough ADA compliant rooms, pool lift out of service (all promised in contract), no ice machines or buckets (bags of ice were provided on request at the front desk), and then there was the fire…more on that later!
There were a couple of good things about the hotel: 1) Food – The full breakfast with made to order omelets, fresh pancakes, sausage and bacon was excellent. Plus, there were other items to choose from like fresh fruit, yogurt, pastries, bagels, assorted cereal and coffee, tea and juice. And 2) …the hotel itself was pretty even though it’s a bit outdated. Ok, maybe three things: The suites were very spacious. For two people. Not 20. It was a bit crowded in the extra room for in-house meetings. Fortunately, we were able to graduate to the patio outside the indoor pool for some of the gatherings.
Monday – Individual sightseeing, pool time or free day to do as one wished. Registration was in the lobby at 7:00 pm. Unfortunately, if people didn’t take advantage of this day to visit, there was little time to during the week. This was a working conference, and the results were worth it!
Tuesday – Meetings with legislative staff began at 10:00 a.m. It was divide and conquer time, as two meetings were scheduled at the same time, and transportation was complicated with an ADA shuttle, contracted out by the hotel, that only held two wheelchairs. Gwen’s van held two chairs and 4 people.
By the time the week was over, we had our timing down between trips to the metro, while on the metro and arriving at the senate/house buildings on time. A WHIRLWIND! One thing that saved some of us was the tram we were able to take between buildings with our escort, Jack from Congressman Van Drew’s office. Here is the list of staffers who met with us:
Naod Aynalem, Legislative Assistant
Senator Ron Wyden (D) OR
Jordan Joblanski, Legislative Assistant
Congressman Joseph D. Morelle (D) NY
Disability Caucus, Appropriations
Matt Kearney, Legislative Aid
Senator Ben Cardin (D) MD
Carl Roberts, Senior Legislative Assistant
Congressman Mark DeSaulnier (D) CA
Disability Caucus
Sue Ellen Wilk, Legislative Correspondent
US Senator Richard J. Durbin (D) IL
Democratic Whip
Tyler Adams, Legislative Assistant
Congressman Mike Thompson (D) CA
Ramya Ravi, Legislative Correspondent
U.S. Senator Alex Padilla (D) CA
Carter Forinash, Legislative Aid
Congressman Donald Beyer (D) VA
Maxwell Wright, Legislative Asst.
Congressman Ken Calvert (R) CA
Disability Caucus, Appropriations
Quinn Hirsch, Legislative Assistant
Congressman Steny Hoyer (D) MD
Health Policy Advisor, Appropriations
Noah Garber, Senior Legislative Assistant
US Congressman
Dr. Jefferson Van Drew
Diane Adamson, Legislative Director
Congressman Jamie Raskin (D) MD
Now for the big news! From the USA Thalidomide Survivors page:
“SPECIAL ANNOUNCEMENT: Congressman Jefferson Van Drew of New Jersey is working toward building a bipartisan coalition for our USA Thalidomide Survivors Group Bill; a contact made thanks to the connections and advocacy of Thalidomide Survivor Katherine Falcone. His staff, led by Senior Legislative Assistant, Noah Garber, has already begun to research and work on language for the bill!”
We had an issue with materials and let me tell you why. Our director of communications and friend, Jean Grover, received a compound fracture of the left arm during a scooter accident before the event. This required surgery yet she finished the programs and made sure the folders we were presenting to legislators were in ship shape. Unfortunately, there was some confusion with shipping and materials didn’t make it in time. But let me tell you, we were able to wing it splendidly! The biggest issue was how much Jean was missed. We sure do appreciate all the work she did for us even when she should’ve been resting and healing. So, we presented her, via Google Meet, a small token of our appreciation:
The inscription reads:
IN RECOGNITION AND APPRECIATION
C Jean Grover
USATS Communications Director
Congratulations
For your accomplishment directing and filming
2 award winning films documenting the
USA thalidomide community. USATS friends & family
thank you and appreciate you and your hard work!
Presentations were given by Dr. Burt Pusch and Jan Garrett on Reframing Disability and ADA, Gwen Riechmann on Service Dog Myths and Truths, and JoJo Calora on Activities of Daily Living Tools.
The conference was another great success ending with a “roaming” dinner where none of us had to actually roam. Food was provided, mingling and comradery were the themes, and fun was had by all. There was something missing though. Jojo’s karaoke! We did have a theme song this year, however. “We Didn’t Start the Fire” by Billy Joel. Some of the legislative staff had heard of us because of this song. And speaking of FIRE…
A fire broke out in the dumpster right outside of Jan and Burt’s rooms (directly under Jan’s window). Fire alarms went off in the hotel and an evacuation began. Unfortunately, the hotel did not practice any emergency protocol. The alarm was all they provided. We were unaware of a safety officer on duty due to lack of communication and immobile guests were left to fend for themselves. Hotel staff were noncompliant in so many ways. Nonetheless, the fire department arrived quickly, everyone made it out safe, and Karla, Diane Wilhelm’s sister, knocked on every door she could to make sure no one was in danger. Not a great ending to our trip, but an excellent outcome.
We invite everyone back next year as we continue our quest to live our lives with dignity and independence. It was great being in the presence of extended family again and meeting new members.
Please join us next year! It takes a village!