Observations from Below: Banned in D.C.

11/28/2017 03:56 pm ET Updated Nov 30, 2017

You have noticed that I have not written this month, due to an extended business trip. Firstly, I went to Cary, NC to attend an NC Council on Developmental Disabilities meeting. After that was over, I went directly to Washington D.C. for the third time within a year. The purpose of this trip was to visit the national AUCD conference and to present a poster for the NC Empowerment Network, a new self-advocacy organization which I’m helping get off the ground. I shared a space with my friends Deb Zuver and McCafferty Kenmon from the Carolina Institute for Developmental Disabilities, which is home to the three major programs of national significance for I/DD. Those three include NC’s University Center of Excellence in Developmental Disabilities “UCEDD,” Intellectual and Developmental Disabilities Research Center “IDDRC,” and the Leadership Education in Neurodevelopmental Disorders “LEND.”

Considering that I had not presented a poster since college, and this was my first time doing so for a national audience. Although we didn’t have as many visitors as I would have liked, I thought it went well. One interesting thing about attending several different conferences and representing different agencies is that I get to wear different hats. When I represent Disability Rights NC for example, I wind up hearing about law and disability rights. Since the university centers do more activities catered towards academic research, this felt more like a college symposium. I’m glad I remembered the type of questions that you’re supposed to ask during an academic conference.

Before my presentation began, I had the opportunity to walk around and view other state’s research. I only saw a small fraction during the process, but there are some very cool initiatives going around the country. The most valuable connection I made was with the University of Minnesota. They have a very helpful website related to self-advocacy groups. It contains videos and information from a plethora of self-advocacy groups across the nation. Once NCEN gets established, it will be helpful for us to build a relationship with Minnesota so that we will have some type of national recognition.

My assistant Dave and I tried to get community integration by attending a sports bar so that we could watch the Carolina Panthers game. Dave searched and called the night before looking for wheelchair accessible locations for us to view the game. When we pulled up, the viewing of the game had been moved to across the street due to this certain location showing a big soccer match and the bar was full of Manchester City and Arsenal fans (which they could have conveyed to us when we initially called the night before). Unfortunately, the new location was up three flights of steps, and I could not make the trip. I let Dave go by himself, and I ended up going to the Safeway grocery store with my parents. I also learned that Sunday is apparently a big shopping day because the store was packed and that’s what the cashier told us. I think Washington gets a bad rap because once everyone gets out of their vehicles, they became significantly nicer. Even the cashier let us use the wrong line because we accidentally went through the express lane, and they told us to take all the time we needed. I know from previous experience that Washington doesn’t have sweet tea, so I bought myself a case of Vanilla Coke, which I only drink when there aren’t many other options.

The business part of the trip ended early for me on Monday since my presentation was on that first day. I gathered as much information as possible so that I could have time to visit Washington’s attractions. On Tuesday morning, I attended the plenary to listen to U.S. Secretary of Labor, Alexander Acosta speak. He, unfortunately, did not attend, for reasons I do not know. I did hear a lot about emergency management and Puerto Rico from the rest of the participating panel. Overall, the conference was great for my confidence because it showed me that I know a lot of the important things that are happening in the realm of self-advocacy.

After that, my mom decided it was our best use of time leave and explore DC instead. I felt weird the rest of the day because I don’t normally play hooky, and didn’t attend the rest of the conference where I was no longer required. We found an accessible double-decker tour bus and completed a whole tour well into the evening and in the rain. We were allowed to use the bus pass again the next day, with the mindset of hopping off and back on at some of the attractions. Both my stepfather David and my assistant Dave were feeling a little under the weather and decided to sit this one out, so my mother and I ventured out all day Wednesday. This part of the trip was the most important to me. I got to visit the FDR memorial and see his homemade wheelchair. I also visited the MLK memorial for the first time, too. I spent a lot of time with my mother, which was great. We almost had an incident on the way to the bus service, as there was a narrow sidewalk that was obstructed by a light pole. We thought I might be able to get past it, but I ended having a “controlled fall” off the curbside. Adrenaline has amazing effects on moms, and she was able to catch me and my chair, which is over 300 pounds. Surprisingly, she didn’t have any after effects from the calamity that ensued. I did happen to lose a small piece of my chair but ended up finding it again on the bus later in the day. Other than those few small mishaps, I came away virtually unscathed.

I know this was a very long blog, and I thank you for reading it. I would be remiss if I didn’t mention that there’s a tax bill with a very bad policy outcome. I ask you to join me and educating/informing our representatives and you can mentions three things:

Talking points created by the national Consortium for Citizens with Disabilities concluded that the Senate tax bill​:

· Dramatically cuts the revenue necessary to fund Medicaid, Medicare, Social Security, housing, and other services that benefit people with disabilities.

· Eliminates tax deductions and credits that help people with disabilities work, access housing, and get medication.

· Repeals the Affordable Care Act’s requirement that everyone have health insurance. This will cause premiums for people with disabilities and pre-existing conditions to increase, leaving health insurance unaffordable for millions.

· ​The $1.5 trillion cut to revenue is the “pay for” for tax cuts that disproportionately benefit the wealthiest Americans and large corporations.​

That’s how roll……

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