My pandemic story is an unusual one. During a time when most people were acutely feeling the pain of isolation and loss of social interaction, I have been actively finding a community of my own. I have been disabled my entire adult life, since a car accident left me with an incomplete spinal cord injury when I was 15 years old. Since then I have used forearm crutches and AFO braces to ambulate. Although it’s been over 20 years since my accident, it was only during the pandemic that I began to make an effort to meet other people with disabilities. In the beginning of 2020, I reconnected with a close family friend, Bob, who had survived polio as a child. As the pandemic made it necessary to stay home, we spent hours talking on the phone together. Bob is probably the best storyteller I know, and he recounted anecdote after anecdote from his adventurous and exciting life. Many of his stories highlighted the value of having a disabled community, and I was inspired to seek one of my own. In the fall of 2020, when the second wave of COVID-19 was ramping up, I started attending the Mount Sinai SCI Peer Support Group on zoom. It was there that I first met Natalia who invited me to join Women on Wheels. At my first meeting I found an amazing group of confident and charismatic women. The openness with which they spoke about their disabilities was thrilling to me—It was such a shock to hear people talking openly and casually about concerns and issues which I never spoke about out loud except possibly with a medical professional. At first, I felt a little intimidated and was reluctant to speak up at our weekly meetings, but over time I have become more comfortable. All the members of W.O.W. are extremely warm and welcoming, and I’ve been so grateful to become part of this group. Late last year my friend, Bob, passed away. I miss him and his stories more than I can say, but thanks to him, I am making new friends and, for the first time, I feel like I belong to a community of my own. As New York continues to emerge from this pandemic, I’m excited for the chance to meet all the women of W.O.W. in person and looking forward to getting to know everyone better and better.
The first thing you need to know about camping is the dirt. There’s a lot of dirt, and you just have to live with it. Dirt on your shoes, dirt on the floor, dirt on your clothes, dirt on your skin. The other thing is bugs. You’re up close and personal with mosquitoes, moths, ants, midges, and all sorts of other creepy crawlies. There are screens on tents, and also on RVs, but tents close with zippers often, and these are just not as effective as at home.
Add this to being in a wheelchair, and you have some interesting situations. For example, going to the bathroom. Although most campgrounds and parks will say they have accessible bathrooms, we know that sometimes this is not true. There may not be enough room for a walker or wheelchair, or some things are in the way, or little girls use it because they think it’s fun. Don’t get me started on “accessible showers.” Too often there are steps required, no handrails or grab bars, a fantasy instead of an actual accessible shower head. If you have a chance, scout the facilities in advance, or just assume there is no shower for you, and that peeing may present challenges.
There is a problem getting into the tent because it has a liner with a 3 inch lip (I think this is to keep out water, but all tents seem to have lips – arggh!) I think you need a threshold ramp. Also, pushing my manual chair on uneven grass was tough, so definitely use a power chair.
Campgrounds are noisy because you have little between you and the world, in this case, a scrap of thin fabric. Most campgrounds have quiet hours but who wants to enforce it?
For all the challenges, there are entertaining strangers, friendly strangers, people dealing with their own difficulties which brings comradeship, nature (see below), and fresh air that really picks up the appetite. Food always tastes better when camping.
This time, we went in a tent which meant we had to carry with us our beds, our kitchen, as well as everything else. And set up/packing up are really time consuming. Next time, we will try an RV, a trailer that includes kitchen, bathroom, built-in beds, and screen door and windows. Not only does it have everything built in, but it has a floor. I don’t think I can use my wheelchair inside because there’s not enough room for it, but I can move around by holding onto built-in furniture, and to strategically located grab bars. Haven’t taken it out because it’s unwieldy, and tiring to drive with, but there are lots of local places where we can camp. I can’t wait!
Here’s our tent – big because of the wheelchair. This is a 12-person tent (12 people in sleeping bags right next to each other would just fit). There were 2 of us. Below is the tent we use for eating (it goes around the picnic table, and provides shade and respite from the bugs).