NorCal SCI's rep at Roll On Capitol Hill shares perspective on advocacy trip

United Spinal Association (USA) held its 7th Annual Roll on Capitol Hill Legislative and Advocacy Conference this past June in Washington, D.C. and NorCal SCI’s Carl McGrew was able to represent us and learn a great deal along the way.  The event is designed to address issues that impact the health, independence and quality of life of individuals living with spinal cord injuries and disorders, including disabled veterans. Every summer, USA’s member advocates visit with and educate Congressional leaders about the policy issues affecting the spinal cord injury and disorders (SCI/D) community.  The following is Carl’s diary of his time at this event.

Carl McGrew seen in the middle of this picture

Carl McGrew seen in the middle of this picture

I had taken short flights before this trip but four and a half hours in the air will be my longest flight since my injury in 2012.  My flight was late and I had to make a hurried connection.  An airline employee pushed me to the connecting flight's gate so I could get there in time. Or so we thought.  Then, we were told the connecting flight was two hours late!  That gave me time to attach a leg bag and put on a catheter condom in preparation for the long flight. Unfortunately, the adhesive on the condom failed and I had to do an 'emergency' cathing in my plane seat.  I found that laying a blanket over the table tray creates a drape to help keep the moment private.

The hotel we stayed at had a roll-in shower but provided an "attendant" shower chair: small wheels all around so the user could not propel the chair. Since I did not have an attendant with me, that was problematic but I was still able to push it by using the bathroom's grab bars.  I left my transfer board in a men's room at Ronald Reagan airport, but the event organizers found another one for me. My room had the typical high pillow top mattress.  So much for an ADA room.  The staff, from front door to housekeeping to food staff, were unfailingly polite and attentive.


When it comes to ground travel, I am still using taxis.  The wheelchair accessible taxi drivers both to and from San Jose airport had a $20 'wheelchair fee' added to the amount on the meter.  Drivers would advise of this fee at the end of the ride. THIS IS ILLEGAL. If you have used a taxi in San Jose and been charged an extra fee for your wheelchair, please contact me:  Carl McGrew (408) 667-1344.  In Washington, I never had to wait more than 10 minutes for a wheelchair accessible van taxi.  All cab drivers were polite, knowledgeable and did not charge an extra 'wheelchair fee'.

As for the Roll On Capitol Hill:
Wow, over 100 mobility equipment users and family supporters were at the events.  Many, like me, were attending for the first time.  There were pushed chairs, power chairs and stand up chairs. I met  paraplegic and quadriplegic wheelchair users from around the country and met and recognized people I'd seen in the New Mobility magazine.

It felt good taking action to preserve my rights and those of my spinal cord injury family.  The first evening was an orientation for first timers, explaining the process we would go through.  Monday was spent in "class" learning about the particular issues we would address with our elected representatives: air travel, veterans' health care, and defeating HR 620, which would roll back some ADA protections.  I learned about ways to connect - with each other, the legislators' staffs, and the public.  As we made our visits, other groups were making the same visits.  Quite an eye-opener about the political process.  I even picked up a fashion tip about preventing the dreaded 'plumber's crack'.

This was my first visit to DC.  It was hot, humid and I spent one day pushing my manual chair while wearing a suit.  Fortunately, I was able to rehydrate in the hotel lounge.  I stayed a couple of extra days to be a tourist.  The Washington monument is closed for repairs and the elevator at the Lincoln Memorial was not in service.  During our visit, several of us rolled past the Supreme Court, where a demonstration was taking place.  The outdoor monuments (Vietnam) were awesome as was the reflecting pool.  The Smithsonian Museum of African American Culture was phenomenal.

I am now a better trained advocate, with knowledge of specific concerns confronting our community.  And I still want to take the elevator at the Lincoln Memorial. When do I sign up for next year?