I was excited. A week with so many others that share a passion for disability advocacy and rights. …. in the big city too? Wow, this is going to be amazing!
I’ve never been to a National Independent Living Conference (NILC) so I was overwhelmed. I really didn’t the hang of it until mid week. I heard the conference had booked hotels in that block. I was grateful to have stayed at the actual hotel of the conference. The beautiful Grand Hyatt was amazing. The design of our ADA room got my approval too!
Rumor had it that this year was much bigger in terms of the number of people that where there. There was a huge increase of youth attendees than there had been in the past. Makes sense right? 2015 was the 25th Anniversary of the Americans with Disabilities Act (ADA). This was the year of Generation ADA!
Monday I attended a workshop on reforming the definition of Social Security. The panel was excellent. The jist of the workshop is similar to my blog entry. The way Social Security is currently totally undermines a persons mind and spirit. Rather than giving supports for employment, a young person has to surrender their determination to become employed and abandon hopes of leading independent lives in order to receive benefits.
At the Annual Meeting of the National Council on Independent Living in July 2014, a delegation of approximately 700 individuals with disabilities passed a resolution urging NCIL to push for a redefinition of disability as it relates to the Social Security Act.
The first night we all gathered to hear speakers. Two that were most memorable to me were, former Senator Harkin and G. H. W. Bush’s grandson, Pierce Bush. (George H. W. Bush signed the ADA into law on July 26, 1990) A short interview was shown of Tom Ridge interviewing George H. W. Bush earlier this year. Bush called the ADA one of his "Proudest Achievements". The activities that night were a perfect way to celebrate the 25th Anniversary of the ADA.
The second day there was a briefing on the march to the Capitol and meeting with our Representatives. I made sure to listen up for that, even though it was hard because some of us were spilling out into the hallway. I was glad there was a teleprompter to read. A good example of how one device geared towards aiding one disability helps us all.
The march to the U.S. Capitol to talk to our Representatives was empowering. We lined up on the sidewalk with our state. I heard there were 1,400 people on the march. The motorcade was ready to assist us in practicing our freedom to rally, which a great feeling. The march took much longer than it took the day before when Brian and I walked to the White House and then the National monument. (The White House had so many different trees. I would’ve like to learn where they came from and who brought them over. I love trees.) We took Pennsylvania Avenue to the lawn by Capitol. There were people running up and down to line to check if we were okay. They also kept us with chanting phrases such as, “Nursing homes have got to go! Hey-hey Ho-ho!” A paratransit taxi cab that passed by a couple of times gave us some encouraging honks. Brian saw one driver flick us off and make a u-turn at a stoplight because he was tired of waiting to cross. So exciting! There on the lawn, we had lunch and listen to speakers “Rally the Troops”. The huge Justin Dart float was there. It remind me when I was there years ago for a My Medicaid Matters rally and his REAL hat was up on stage.
The two most memorable moments from lunch on the lawn were when Congresswoman Tammy Duckworth and Senator Bernie Sanders spoke. Every now and again a speaker would ask us to move closer to the stage, I found that funny. We had wheeled, walker, scootered, canned in 90 degree July heat, some of us were medically fragile …. no way were we moving out of the shade into the blazing sun. Ha! There were a few up by the stage though. I remember Michael from Arkansas up there waving the ADAPT flag. He was so proud to do that. *
The third day was the resource fair, awards luncheon and the NILC’s Annual Council Meeting to vote for new board members. At the luncheon I remember a Japanese man using a wheelchair and his PCA sitting at our table. They were using ear buds to interpret what was being said on stage. Earlier that week, I tried speaking with another pair of guys from Japan. They had some use of English so that was good. One award winner I took note of was Jensen Caraballo. He was a young man that received an award for advocating hard to get himself out of a nursing home. At the council meeting each person who wanted a board position gave a speech, or had somebody read one if they were not present. This part of the meeting was very interesting to me. Being a member of the Virginia Independent Living Council, I thought I was allowed to vote, but when I was in line to receive my voting card they did not issue me one. The speech given by a young women I thought was best. Maybe it was the conference theme was Generation ADA that she was elected to a NILC board seat, but I thought it was very fitting.
I attended a workshop on Parking Equity. It was a presentation on a report that had been done on an experiment done on accessible parking in Kansas. It was intriguing to me because as a ramp van user it seems people don’t know what the signs on the parking spots mean. (Read my commentary that was printed in my local paper about this issue.) The pair of women conducting the experiment survey two parking lots at peak usage hours. They documented on things such as who used what spot, ramp vehicles or non-ramp vehicles. They tried four different signs to indicate a ramp vehicle parking spot. Each sign had different results. The goal of this was to discourage non-ramp vehicles from parking in the spot designated for ramp vehicles.
This study found that alternate signage for van-accessible parking spaces can prompt drivers of vehicles without ramps or lifts to use a regular accessible space when available, reserving the van accessible space for Ramp/Lift-Equipped Vehicles (RLEV) users.
I also attended a workshop on the next generation of Long-term Services and Supports. The workshop panel discussed the current Medicaid long-term support structure and how it effects this generation and the next. The shift is toward community inclusion, so big things are happening with the new ruling from Centers of Medicaid Services. It was a packed room. The panel was great. Andy Imparato was a panelist and I got my picture taken with him afterwards. One of the coolest things about NILC was the chance to meet advocacy rockstars that I’ve been following for years online! Emily Ladau also recognized me from online at her social media workshop she led with Maddy Ruvolo.
That evening there was a social. it was so much fun! A Virginia co-board member and I sat together. At the table with us, were a mother and son which I saw at the Capitol Ale Brewery during lunch earlier that week. There was also a very funny man with has wife and daughter. He was making me laugh so much! Kayla, the Disabilities Youth Ambassador spoke. I was moved and felt hope for the future as I listened to her speech coming from her communication device. Women that were all the way from Japan were handing out fans and packets of soup to the women. I thought that was so sweet. We took them out on the dance floor as a way of saying Thank You.
One night Brian and I caught an elevator with the youngest NILC attendee, Peter! It was such a thrill that week to meet and talk with people from New York, Alaska, Arkansas, California and Japan!
On the last day, there was a summary given by each state on what had happened during their meetings with Representatives or with their assistants. There were a wide range of responses people got, some excellent some not too hot. But hey, that’s politics.
People who attended the conference used these hashtags during the week: #ADA25 #NILC2015 #GenerationADA #CIA4ADA
Our peers that couldn’t be there due to economic or health reasons were not forgotten about, they were mentioned many times. It humbled and reminded me why we were there, to advocate for others. This amazing week was a celebration of diversity, acceptance, advocacy and networking. A fellowship with advocates that left me feeling empowered and confident about the future! It was an honor to be there.
* I missed getting to meet with my Representative, because were on a mad search for a restroom after the march and lunch. I did take a self guided tour of the U.S. Capitol museum (Exhibition Hall). When I returned home, I did manage to get a very short email conversation going with my Representative’s Legislative Assistant about the Community Integration Act (CIA).
Watch Flip Polizzi’s video to his Representative about how CIA would change his life. I met and talked with Flip in one of the many lines waiting for the elevator down to the conference. He is far too young and has too much spunk to be trapped in a nursing home.
Official NILC photos by Michael Clegg.
Official NILC wrap up blog.
(pictures not my own)
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