Emma
“Living with a physical disability forced me to be strong, but I gained even more strength because of how I chose to deal with it.”
Emma is fiercely determined and exceptionally brave. Living with a rare form of muscular dystrophy, her grit and perseverance stemmed from the desire to achieve all that she could before this disease hindered her independence. From skydiving to taking on New York City over the last year, she has continued to set goals for herself and ensure that she achieves them, no matter what it takes. She is an inspiration, a leader, and an advocate for others living with a physical disability, facing each new challenge with optimism, resilience, and a sense of humor. She shows us that believing in your own capabilities can break down the barriers of limitation. Meet Emma. This is her story.
K: Please introduce yourself!
E: Hi! My name is Emma Farley. I am a 28-year old woman and a full-time wheelchair user/physically disabled. I moved to New York from Wisconsin 5 months ago so I could become more involved with the disabled community as an advocate and to start building the kind of life I want for myself.
I am currently working a part-time job as a debt collections agent as I search for jobs and opportunities that allow me to start building more experience and credibility within the disability community as an advocate.
In my free time I love going out to eat, watching movies, visiting museums, taking pictures, and getting creative with art projects.
K: Describe yourself in your own words
E: The name Emma means “whole and complete”...I am Emma.
I’m confident, stubborn, and resilient at the core. I know what I want and I know what I’m capable of. I am neither quiet nor hesitant with my words or actions, and it is simply not in my nature to accept defeat when I am working to achieve something that is important to me. This has been true about me since the day I was born and has never changed.
I am also compassionate, understanding, giving, and able to find humor in things and laugh. It is these three traits that I’ve seen grow stronger as I experience life. The times in my life where I haven’t been compassionate, understanding, giving, and unable to laugh were times where I was not being true to myself and pretending to be someone I’m not.
K: What is your favourite thing about yourself?
E: I love my fearlessness. I define being fearless as having the strength to face fears, and the courage to overcome them. I have many fears, but I never let them hold me back in life. If I did, then I wouldn’t have had any of the experiences I consider most valuable. I feel very proud of all the times I’ve been fearless in my life. Sometimes this has been physical, sometimes it has been mental, and other times it has been emotional.
My fearlessness is how I’ve always been able to overcome any physical fears and take risks. In the past year, I went skydiving and moved to New York City! Being fearless is also what makes me such a strong advocate for myself and others.
K: Tell us a story. Have you had an experience that has defined you or made you stronger?
E: I was born with a very rare form of muscular dystrophy, a genetic neuromuscular disease that weakens the muscles and gets progressively worse over time.
In early childhood there were three realities I was forced to accept:
My muscles are weak.
My muscles will continue getting weaker.
I may only have a small window of time to do things before this disease takes away the opportunity forever.
This is what led me to make two promises to myself:
I am going to do as much as I can for as long as I can.
I will never allow muscular dystrophy to hold me prisoner. I will find a way to do the things that are important to me.
Having this knowledge about my life and having to make those decisions before I reached kindergarten was extremely difficult, to say the least. I am the only person in my family with muscular dystrophy and I didn’t meet anyone else with muscular dystrophy until I was 8 years old. Accepting my body and teaching myself how to adapt to the world with this physical disability was something I did mostly on my own. I’m extremely proud that I have been able to keep those promises I made to myself as a little girl.
I took full advantage of the time in my life I was able to walk independently, climb stairs, get up from sitting on the ground, etc. I did horseback riding, dance classes, learned how to ski, and even played on a soccer team (called The Backstreet Girls, haha). I played at recess with my peers, participated in gym class, and was able to keep up with the many rowdy cousins I grew up with. All of these things were incredibly painful and difficult, but I did them anyway because I knew how important it was that my childhood had those experiences and I knew it was going to make it less painful to say goodbye to having those abilities when that time came. I started losing my ability to walk at age 12 (6th grade), which is when I got my first power wheelchair. I knew those three years of middle school would likely be the last years I could go without wheelchair assistance. I could no longer participate in gym class, recess became unsafe, and moving around became unbearably painful and scary. Still, I fought tooth and nail to do whatever I could until I couldn’t anymore.
I did this as I lost my ability to walk and as my ability to function independently has continued to slowly but surely decrease through the years. I am now 28, a full-time wheelchair user and, experiencing what is likely my last few years of being able to live independently without help from personal care assistants (PCAs). Transferring to/from my wheelchair, getting myself ready/dressed are tasks I have to do a few times each day and require giving myself a pep talk beforehand because they’re so difficult. There are many days when I want to scream because it’s so hard… but I do it because I know I will eventually be forced to have help, and I know how hard it’ll be to accept giving up that power and privacy.
Living with a physical disability forced me to be strong, but I gained even more strength because of how I chose to deal with it.
K: What is one piece of advice you would give to your younger self?
E: Listen to your intuition/gut feelings! Our bodies can sense when it is in danger/potential danger or when something is “off” much quicker than our brains can. Intuition and gut feelings is your body giving your brain a warning signal!
K: What does being a woman mean to you?
E: Women are the strongest and most powerful beings on the planet. Like water, women are essential for life, and progression would not happen without us. I feel so grateful to be a woman because there’s nothing a woman can’t do!
K: Who is one woman that inspires you? What would you say to her if she were here now?
E: Gosh, there are many inspirational women! The one that comes to mind at the moment would have to be my friend Bella Sobah. Bella was a longtime friend of mine who I met back in 2004 at summer camp for kids with muscular dystrophy. She passed away unexpectedly last June at age 25. Bella was absolutely hilarious, incredibly kind, determined to create positive change in the world, and one of the most intelligent and wise people that I’ve ever had the pleasure of knowing. She was an absolute powerhouse with a strong voice and message… yet she was also so peaceful and had a calmness to the way she spoke. I could go on and on about Bella. She helped drive my decision to move to New York to become a disability advocate. If she were here right now I’d want to tell her how lucky I feel to have known such an amazing person and that I know my life is better, and I am a better person, because she was in my life.