by Danielle Liptak, Leland, North Carolina
Last fall, I traveled with my parents to Boston for the Abilities Expo. It was a great trip and I’d like to share my experiences. With so many of us sheltering in place, it’s good to reminisce and to look forward to the day when we can travel again.
We left for Raleigh/Durham the night before our flight just to make sure we were not too tired or rushed. When it comes to disabilities, especially physical ones, it is best to be prepared and leave time for rest in case anything unexpected happens.
I was pretty anxious traveling with my power chair and walker, but I knew that for my own self-esteem, independence, and to give my parents a break, I wanted to travel with my power chair. My fear, of course, was the possible damage that would occur while flying. Airlines break an average of 24 medical devices A DAY according to what I’ve read.
To my pleasant surprise, JetBlue took the time and asked all the right questions about my chair: how much it weighed, what kind of batteries it used, etc. They even sent a person from the ground crew to learn how to fold and push my 240-pound chair. Unfortunately, we did have one mishap. A brake was not placed back into its original place and the chair wouldn’t start. After 23 painful minutes, my dad was able to figure out the problem and we were on our way. That being the only problem we had with flying, I was relieved. Thank you JetBlue! I will definitely fly with you again.
Not everyone’s airline story turns out this positively, and I hope that one-day wheelchair users will have the option to stay in their chairs. Check out this petition for wheelchair access on commercial airlines. It has 58,062 signatures with a NEW goal of 75,000.
When we landed in Boston, we were ready to get right to our hotel. I had made several contacts beforehand to figure out the best way to get to the hotel, which was in the Seaport district. We took the silver bus to a stop that was an eight-minute walk from the hotel. We used Google maps, asked a few people how to get to the hotel, and we made it! That first day was chilly. The one thing I did not do was check on Boston weather ahead of time, but for the rest of the trip, the weather was beautiful and sunny.
Abilities Expo, here we come!
Our hotel was within walking distance of the convention center where the Abilities Expo was located. Arriving at the massive convention center, we walked for what seemed like forever to get to the Expo. If you have the option to use a wheelchair, do it because the walk from the entrance to the convention center was long.
I was very excited once we entered the Expo. There were so many booths and wheelchair users. I was among my people! Everyone was so good with their mobility devices. It is amazing with some of us having such bulky chairs that we are elegant when maneuvering through crowds. Our skills always amaze me. I tried to hit up many booths at the expo and check out all the cool things they had to offer. Here are a few that stuck out most for me.
The first was The Tactee® system, a set of magnetic assistive devices designed to restore autonomy and independence in daily activities of people with mono or bilateral functional grasping deficiencies. The system, with three different grasping element sizes, includes special cutlery and adapters that make it possible to use them with various common items such as pens, toothbrushes or razors and so on.
The next thing that caught my attention was an electronic muscle stimulator from HiDow. They use low-voltage electrical pulses to interrupt pain signals before they reach the brain through soothing pulses that simulate natural painkillers, called endorphins. I tried the unit and it felt more like a deep vibration rather than the electric pins and needle feeling I get from the TENS that I have at home.
And now for something completely new
Finally I got to do two things I have never done before! There was an adaptive climbing wall presented by Mark Wellman, adventure athlete and Paralympian. You can check him out on his site No Limits. It was such an amazing experience. His staff was educated and kind. They joked with me and made me feel comfortable. It was a really cool experience looking out and seeing all the booths from high above the expo!
I also got to drive an off-road mobility product TerrainHopper. The TerrainHopper is an electrically powered off-road mobility vehicle engineered to conquer deep mud, soft beach sand, snow, rocks, steep hills, and many other obstacles. With a ground clearance of nearly 10 inches and a 35-degree climbing capability, some people have called it a “mini Land Rover.” With a top speed of twelve miles per hour, you could really book it around the convention center!
The Expo was well staffed with lots of knowledgeable and helpful people. They had ATMs, accessibility help desks, an American Sign Language interpreter, loaner scooters, and even personal care service attendants. There were so many fun events I wish I could have attended, such as learning all about service dogs and learning to curl (a sport) in a wheelchair. There were free workshops about home modifications, affordable and accessible housing, and opening your world to accessible travel.
Boston was a great city! I wished I’d had another week to enjoy everything it has to offer. I was able to call and get an accessible taxi to my hotel within 30 minutes. Other power chair users have had a difficult time accessing a cab, so maybe the timing or the fact it was off-season made a difference. We also took a day trip on the Trolley Tours. Again, we had to call ahead and talk to several people to get the right information but we were able to do it. I was so impressed with the people of Boston. Everyone we talked to was friendly and very helpful. One of the many highlights of my trip was meeting June Kinoshita from the FSHD Society and Lexi Pappas a fellow FSHD warrior! I will definitely be coming back to Boston!
Editor’s note: Danielle “Dani” Liptak is 30 years old and currently resides in North Carolina. She was diagnosed with FSHD at the age of twelve. She’s very active on Facebook.