Do you care to give some insight on your specific disability (when, where, how etc? No worries if not) I think you suffer from Ehlers-Danlos syndrome, do you care to give some perspective on this or (otherwise typically) invisible chronic ailments for those who might not be as familiar?
Absolutely! I was born with a condition called Ehlers-Danlos Syndrome or EDS. EDS is a genetic condition that causes my body to make collagen that is too lax or stretchy. Collagen is the main structural protein that makes up our skin, muscles, tendons, and other connective tissues. Collagen is the glue that holds our bodies together. As you can imagine, this makes me quite stretchy. EDS causes hypermobile joints that dislocate very easily, poor wound healing, skin that is freakishly stretchy, and a plethora of other issues including easy bruising, trouble maintaining my blood pressure, inability to regulate my temperature, digestive issues, nerve damage from constantly dislocations, etc etc etc. I was diagnosed when I was 16 due to frequent shoulder dislocations. I remember being told my a doctor that I would most likely need a wheelchair by age 20, but I was a dumb teenager so the thought of this looming wheelchair never really stopped me or held me back any. My disability was mostly invisible (minus braces I would wear on whichever joints were troubling me) until I was in my mid-twenties. My hips went from being able to dislocate on command as a cool party trick, to dislocating every time I take a step. I started using a cane here and there, to forearm crutches, to where I am now, using a wheelchair full time.
What inspired you to become active within the disabled community?
I originally started my Instagram page as a way for me to educate and vent about my life with EDS back when my mobility first started to wane. Most people in my life had no idea I had health problems because my issues had been mostly invisible. I was getting to a point where I was using mobility aids and I wanted a way to talk about my experiences as someone who has been on both sides of the mobility spectrum. When I was diagnosed, social media wasn’t nearly what it is today. I had never heard of EDS and neither had a lot of my doctors. No one could tell me what my life would be like down the road and there wasn’t really a way for me to jump online and compare symptoms with other EDS patients. It was a very scary and isolating feeling. I don’t want anyone else to have to go through what I went through when I was first diagnosed. I run my platform as a way for EDS patients, as well as other humans with mobility limiting disabilities to see that they absolutely can live a full and happy life with a diagnosis like EDS.
What impact do you hope your process/accomplishments have on people who use wheelchairs and the community as a whole?
I hope that my laid back, goofball self is able to teach disability advocacy to my able bodied followers in a way that is both approachable and understandable. I hope that I can be a resource for newer wheelchair users by allowing them to learn from all of my MANY mistakes navigating the world in my chair. I want people to hear my story and watch my silly videos and remember that no matter what cards you’re dealt, that this life is so incredibly short so we might as well have a little fun and make someone smile while we’re here.
What is one piece of information you’d like to pass along to the community who might not be as familiar with people who live with disabilities?
That yes, we get around in a way that may look different or strange to you, but we’re still humans. We notice when you stare or avoid eye contact. Please treat us with the same dignity and respect that you would treat anyone else.
How has your disability made you a stronger person? Can you also elaborate as to how your involvement in the community changed your perspective?
Living with a disability has made me so much stronger, mentally and physically. I chose to continue working in the medical field as a registered nurse even after I began to require a wheelchair for my day to day mobility. Ironically enough, I learned that hospitals really aren’t all that accessible for employees. It took me over a year to just get a parking spot! Continuing to work has made me a better advocate for myself and for other disabled individuals who would like to be able to reenter the medical workforce. I’m the only wheelchair user employed at my hospital and it makes me smile so much every time a coworker thanks me for helping to open their eyes to just how inaccessible our world is. Disabled individuals have SO much to give, we just need to be given a chance.
Since winning the Ms. Wheelchair Virginia title, I have been given so many opportunities to speak and advocate across my home state. Getting to be more involved in my disabled community has opened my eyes to just how inaccessible our world is and just how much we are in need of disability advocates who are willing and able to put in the work to be a voice for change.
Living with a disability, adapting and becoming your best self is never a straight path, do you care to share a brief transformative or light hearted anecdote from sometime in your process?
As a public speaker with a mobility limitation, I have run into all kinds of interesting situations. One that comes to mind was one of my last speaking opportunities before COVID19 hit full force. I was waiting for my turn to speak when I received a panic text from the director of the event informing me that the stage had no ramps! Like anyone with a disability, I am very used to adapting to whatever situation I’m thrown into. I simply asked if she had anyone who could help get my chair onstage. She provided me with a strapping lad, I rolled up to the stage, transferred on stage, and then up into my chair that said lad had kindly lifted onstage for me. I transfer in and out of my chair all the time so it wasn’t until I looked up and saw the entire audience silent and staring at me that it dawned on me: People are very used to seeing humans in wheelchairs, but they are not used to seeing the lengths that we have to go to to navigate the world. I worked it into my speech and starting that day, began including more videos to educate about just how I live my day to day life with my disability.
What has been your proudest moment in this process?
Winning Ms. Wheelchair Virginia has probably been my proudest moment in my advocacy journey. To see just how many people believed in my mission and my story was such an incredible feeling.
Anything else? Anything you want to share?
Due to Coronavirus, I’ll be keeping the title of Ms. Wheelchair Virginia through 2021! I’m always looking for speaking opportunities. If you’re interested, have questions about life with EDS, or just want to say hi, feel free to follow me on Instagram or Facebook! My inbox is always open!