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).
On Wednesday, June 27, 2018, Women on Wheels welcomed Lieutenant Anthony Mancuso, Director of the FDNY Fire Safety Educational Program. LT. Mancuso spoke about preventative measures to take in the home such as, not overloading outlets, not wearing loose-fitting clothes while cooking, using baking soda if a pan is on fire, and having smoke/carbon monoxide detectors in working order. He also encouraged the women of W.O.W. to pay attention to the kind of building we live in (fireproof vs. non-fireproof buildings) as this greatly impacts our safety plan.
We also shared our own safety plans and W.O.W. group member, Steph Brantley, explained that when she moved to a new apartment, she let her fire department know her name and address, so they could be aware should there be a fire in her building. This was a great tip for anyone who has a disability.
~Written by Selvije Mulaj
My name is Selvije Mulaj, I have had a disability since birth. I received my first wheelchair at the age of two. I had a pretty normal childhood considering I was in a wheelchair. I learned in the fifth grade that by speaking my mind and advocating for myself, I could help others like me.
Such was the case during my second year of college and I found myself in a building that had been evacuated except for a very nervous security guard and me. The guard had a radio and was listening to what was happening down in the basement where a fire had started. I was in a situation where I was relying on someone who could easily run away from me and choose not to help. At that point, I made a decision to advocate for myself, and told the security guard I could go down the stairs, but he would have to bring my wheelchair down since we were on the 4thfloor.
As I crawled down the stairs from level to level, I remember him throwing my wheelchair down each floor. At one point, I recall yelling at him to calm down and be careful because he could break my chair. As I left the building, my counselor from the Office of Disability Services asked if I was alright. This was frustrating for me because it was after the fact. Why was no one else prepared to help me?
A few days after, I had a class in one of the other buildings. I wheeled up to a memorial plaque that held the names of students who were killed in a fire several years prior. Looking at those names, I thought of my own situation of being left with that nervous security guard during the emergency evacuation and I realized that I had to make my voice heard and share my experience with the administration. I told my counselor what I was planning to do and even though it didn’t sit well with the Office of Disability Services, I knew I had to set it in motion.
I made an appointment to speak to all of the Deans and I explained what happened during the fire. The guard lost his job, and although it was not my intention, that was the result. For months, the Deans and I worked together to set a plan in place to ensure the fire department would know where to find people with disabilities on campus.
The final plan consisted of making sure that there were fire drills that were to be performed at least twice each semester and in the case of a fire, a list of disabled students and their class schedules would be placed in the lobby of each building so the fire department could locate them quickly. It took some time, but by my last year of college, each building went through a fire drill and had the lists in place.
I learned from this experience that nothing happens overnight, however people need to speak up in order for things to change.
~Written by Selvije Mulaj
In October, Women on Wheels (W.O.W.) participated in our group’s first-ever cooking class held on KCC-2, the inpatient SCI unit at Mount Sinai Hospital. The workshop was led by WOW member, Gabrielle Broder, who is herself struggling to find ways to continue enjoying her passion of cooking after having sustained a spinal cord injury at the C5 level almost 2 years ago.
We are women of different ages, physical abilities, and of differing experiences with cooking, but we all came together as a team and made a yummy, homemade Mexican-themed meal. Adaptive cooking devices such as special cutting boards and knives were available for those with limited hand function. Everyone played an important part, from the several members who said they had never cooked before to the one who said she cooks for her family every day to the professional chef.
The dish had numerous components, and everyone was responsible for a large section of the recipe. The menu centered around chicken quesadillas. Everything was made from scratch, from the spice blend for the grilled chicken to the roasted tomato salsa to the guacamole. We even made agua de jamaica, a popular Mexican beverage made from hibiscus flowers, ginger, and lime.
Our thanks goes out to the financial supporters of WOW, as well as to the staff, volunteers, and home attendants who lent a hand (and just to be clear, we didn’t allow them to do the actual COOKING, but they did help a lot with organizing equipment, and cleanup).
A great time was had by all and we enjoyed the shared activity as well as the delicious meal!
~Written by Gabrielle Broder
Yesterday, Women On Wheels joined friends and family at the Sebago Canoe Club for a fun-filled afternoon of kayaking. It was a great escape from the hot city temperatures with bright skies, relaxing sounds of waves, lunch and loads of exercise! Many thanks to the Mount Sinai Rehab crew and the Sebago Canoe Club for hosting the event.
Photos courtesy of Sebago Canoe Club http://www.sebagocanoeclub.org/
On Sunday, July 10th, Women On Wheels was excited to take part once again in New York City’s annual Disability Pride Parade. In the hope of increasing visibility and changing public perceptions of the disabled, we joined thousands of other participants in rolling and strolling up Broadway from Union Square to Madison Square Park. Following the parade there were dance and musical performances to be enjoyed as well as disability-related vendors and community organizations available to provide information about their products and services. All in all it was a perfect day and we’re already looking forward to participating in next year’s 3rd Annual Disability Pride Parade. Won’t you join us?
According to national studies there are 17,000 new Spinal Cord Injuries each year in the United States alone. Acts of violence, primarily gun shot wounds, make up 17% of that total.
The color orange symbolizes the value of human life. Hunters wear orange in the woods to protect themselves and others. In 2013, teens on the South Side of Chicago asked classmates to honor their murdered friend by wearing orange. That simple call to action has grown into a national movement and this year in recognition of National Gun Violence Awareness Day Women on Wheels took part in the movement by making orange ribbons and spreading the word. We greatly appreciate Nyree Stevens, our sister, fellow member and survivor of gun violence for sharing her story and fully support her in her courageous fight to keep rolling forward! #WearOrange on June 2 for National Gun Violence Awareness Day!
My name is Nyree Stevens, I’m 25 years old. On December 25th 2009 after a night of enjoying myself with friends I became a victim of gun violence. I was shot in the neck by a stray bullet which instantly left me paralyzed from shoulders and down. Ever since then my life has changed for the worst and better. Not knowing what people with disabilities go through on a daily basis I’ve learned throughout these years how hard it can be when your independence is taken away from the mistake of someone else. Though I’ve learned to live with my situation it can become overwhelming but that only makes me stronger as each day goes by. I’m also lucky to still have a voice and to be able to share my story and “stand up” for myself. People may not know how gun violence can destroy a person’s life and also their family’s lives. It has to come to an end. #gunviolenceawarenessday
In October of last year, Women on Wheels was given a private tour of a local Greenmarket by a representative from GrowNYC. (http://www.grownyc.org/) In March, they celebrated their 40th anniversary and asked if we would write an article about our experience for use in their campaign.
Health & Wellness for All New Yorkers at the Greenmarket
by Women on Wheels
Women on Wheels, a peer support group at Mount Sinai, was started in 2014 in order to provide women with spinal cord injuries a network in which to share knowledge about their common and individual disability-related experiences. We aim to help our members lead informed and well-rounded lives and do this through weekly meetings, guest speakers and workshops centered around health and wellness, with specific focus on physical, nutritional, emotional and mental well being.
With diet and general health often being major topics of discussion in our meetings, last fall we were excited to be afforded the unique opportunity of taking a guided tour through one of NYC’s Greenmarkets.
When we arrived at the market, we were greeted by Rob from GrowNYC, who turned out to be our enthusiastic and extremely knowledgeable tour guide. He began the day by giving us fruit and vegetable buttons to wear, which immediately put us in the spirit of the farmers’ market. Rob then showed us a map, pointing out the various farm locations in upstate New York where many of the fruits and vegetables are grown before making their way down to NYC. Since most of us only knew of the larger markets like in Union Square, Rob provided us with a list of the numerous other locations throughout the five boroughs — 53 in total! With travel sometimes presenting an obstacle in NYC for those with mobility issues, learning of other neighboring markets was welcome news and greatly appreciated.
Rob explained that the markets not only support the farming industry, but also greatly increase access to high quality, fresh and affordable produce for people in neighborhoods throughout the city. We also learned that to help in this effort, almost every Greenmarket location in Manhattan accepts EBT, or what’s commonly known as food stamps, providing everyone the opportunity to have access to healthy eating options.
Throughout the day, we were introduced to the large assortment of fruits and vegetables that each market offers and found out that some locations even provide textile and rechargeable battery recycling, compost drop-off and information about wind energy alternatives. We were very pleased to see that the entire market was wheelchair accessible, with easy access between aisles and to each vendor. All produce was located on low shelves, tables and crates so that we were actually able to see and reach the wide variety of fruits and vegetables to choose from.
During our tour, we received health tips such as the importance of reducing sugar intake in our foods and drinks, while learning about ways to still add flavor by infusing water with cucumber, melon, lemon or mint. We were also offered a variety of healthy and balanced recipes that could be created from the many seasonal products available at the market. At the end of our tour, we were given vouchers to use toward purchasing items that day or during a future visit. Many of us took advantage of this opportunity and even picked up a few items to have for dinner that night. The mustard greens were a big hit!
This year, in continuing with our focus on healthy lifestyles and inspired by our Greenmarket tour, our members have been keeping food journals and recording their individual eating and exercise habits. In the month of April, we plan to share our journals with a nutritionist who will be speaking to the group and guiding us in making healthy and balanced food choices and reaching our individual health goals. We also plan to take another tour of the Greenmarket this spring, followed by a cooking workshop at Mount Sinai where we will use some of the fruits and vegetables purchased at the market in order to create a healthy meal.
Overall, it was a fantastic experience and we’d like to give a big thanks to Rob at GrowNYC for providing us with valuable information and an exciting day!
Want to learn more about GrowNYC and our $40 for 40 campaign? Visit http://www.grownyc.org/blog/greenmarket-40-40.
To see more pictures of our tour go here:
GrowNYC recently offered to give Women On Wheels a private tour of their Madison Avenue Greenmarket located directly across from Mount Sinai. We jumped at the chance and met the following Wednesday. We couldn’t have asked for a more perfect day — not only fun but highly informational as well! Many thanks to Monica for helping to organize the event and to Rob our fantastic guide. To learn more about their programs and to find a market close to you, visit www.grownyc.org.
Go here WOW and GrowNYC to learn more about our experience!