Photo Credit: Emily Aronica
Hi, I’m Lucy! I am from Sydney, Australia but now live in New York City. I am a wheelchair user due to a rare type of motor neuron disease called Primary Lateral Sclerosis (PLS). I also have several invisible disabilities: Crohn’s disease, IBS, endometriosis, adenomyosis, and neurologically-based chronic pain. I live my life by the motto “You can't change the cards you've been dealt, but you can change the way that you play them” – this has helped me get through so many challenging situations, especially relating to my health. I also try to find the positives in those cards I’ve been dealt, and things I can be grateful for amidst the difficulties. Adjusting my mindset in this way helps me feel empowered, and drives me to keep moving forward no matter what life is throwing my way.
I really leaned on these strategies during 2016, the year that PLS dramatically appeared in my life. It started February 2nd with sudden pain and weakness in my right foot, then progressed to affect my entire right side, and I became a wheelchair user by that December. The diagnosis was a difficult process, as PLS is a very rare disease, and I’m a particularly unusual case due to my younger age and more rapid progression. I came across some people with PLS online, but their situation was so drastically different to mine that I felt even more lost and alone. I didn’t know what my future held – could I still continue with my career plans, could I have children, could I still enjoy my hobby of makeup?
My hobby of makeup was actually my main reason for using social media, I would follow different brands and makeup artists for inspiration. One day in that difficult year, I clicked on an Instagram post featuring beautiful makeup and was surprised to see that the makeup artist was a wheelchair user! From there, I started following all kinds of amazing wheelchair users who I felt I could relate to, and whose lives and experiences helped me see the possibilities of my new life. I realized how much representation mattered. At this point, my Instagram account was still ‘anonymous’, with no identifying information or photos of myself - past experiences of harassment and bullying online had made me wary of sharing anything personal. As time went by and I continued to adjust to my new life as a wheelchair user, I started to rethink my stance on being ‘anonymous’. I realized it was rooted in fear and shame, but I was starting to feel pride in my journey as a wheelchair user with PLS, so I started posting photos of myself in my wheelchair. I didn’t really talk about PLS though, and still had that feeling of being alone. Eventually, I thought back to the first time I saw people I could relate to, and wondered if it was possible for me to be that representation for someone else with PLS. So, one day I added ‘Primary Lateral Sclerosis’ and ‘Motor Neuron Disease’ into the hashtags of my post.
The first time someone messaged me I was surprised. I hadn’t actually expected to find anyone, but the hashtags had worked! I continued to post with these kinds of hashtags, and started sharing details about my diagnosis and my life with PLS. I was getting messages from all over the world, from people with a recent PLS diagnosis, to their family and friends, to those with other motor neuron diseases or looking at a potential diagnosis. Many of them said the same things – “I thought I was alone” and “I’m so glad I found you”. People told me that they thought their lives were over until they saw me living my life. They needed advice on what to ask their doctors, how to deal with invasive testing, when they should start using mobility aids. I didn’t feel alone anymore, but the best part was that other people didn’t feel alone either.
This experience was part of what influenced me to start Wheel New Yorkers – my social initiative for wheelchair users in New York, with the mission to “smash stereotypes, create connections, push change.” It was also influenced by my engagement with the wider community of wheelchair users, that had started with finding people on social media. I attended a wheelchair dance camp in 2018 where I made so many amazing friends, including three women in New York. The four of us together would support one another in anything and everything, and my life as a wheelchair user in NYC became so much easier. They shared practical advice and guidance that made me feel more confident in the city that had become so difficult to navigate as a wheelchair user. When I returned to the wheelchair dance camp the following year, several of the women I met recognized me as “one of those wheelchair girls in New York”, and told me they wished they had friends in their city like I did. I had another moment of realization – could I help other people find the support and friendship that I had?
Wheel New Yorkers was launched as an Instagram page in January 2020. I thought I would post a few photos of my friends and I going about our lives, along with some other local wheelchair users I had connected with. Then, I thought it would be fun to do some activities and social events. I also thought it would be good to share information and resources, so I then started a website too! The possibilities and ideas just kept growing, and I started developing plans for Wheel New Yorkers as an all-encompassing initiative. Although the COVID-19 pandemic definitely slowed things down, I have continued to work on developing and expanding what Wheel New Yorkers can offer.
One of the things that I am excited to offer via Wheel New Yorkers is engaging with brands and products that are adaptive and inclusive, like Slick Chicks. The first time I used Slick Chicks underwear, I realized how perfect they would have been back when I had surgery for endometriosis. I ended up requiring that same surgery again in February 2021, and they were so useful for immediate post-surgery, and my ongoing recovery. I even recommended them to others in my hospital ward, along with my doctors and nurses! I think so many people can benefit from these adaptive products, so I am proud to be a Slick Chicks ambassador.