Changing the Stigma of What Disability Looks Like
Society is programmed to associate certain images with certain things. We learn from childhood that certain symbols identify specific occupations and specific groups of people. They can signify danger or if assistance is needed. We know how to correlate the images we were taught and we know how to appropriately associate them with the correct entity or persona. Everything has identity. And isn’t that what we ultimately want in life? To have identity? To have a solid foundation of who we are as human beings? To be seen and heard and know exactly who we are? But what if that identity is altered? What if who we think we are is not how the rest of society perceives us? How do you change that? Even saying that seems like a pretty insuperable task.
The only way to even consider changing this evolved human trait is to teach the value of perception. We can make snap judgements which come on let’s get real, we all do this; or we can start to look at things from a wider lens. The big picture. There is always a bigger picture. Everything in life, every person, every emotion, every situation, ever pre-categorized stereotype of society has subtext. Has a deeper narrative. We don’t invest in identifying this on a deeper level because life gets in the way. We are going 100 miles per second and rarely have the chance to sit back and attempt to see the bigger picture. We are rushing to get our kids to karate or trying to meet a deadline that we are already two days late on. Life happens and that is reality. But what if we can start to change the way we think? When you change the way you think, you change what you have the ability to see.
I have always viewed disability as a source of empowerment. Evenfrom childhood. One of my good friends in grade school had cerebral palsy. His name was Jesse Cooper. Son of Actor Chris Cooper and Author Marianne DeLeon. Jesse was in a wheelchair and used his computer as the catalyst for communication. I remember being in the 4th and 5th grade and other students were almost fearful of Jesse. They were unsure how to act around him. It was almost like observing a presentation of some tricky science experiment and everyone was carefully analyzing. Even as a child I could not understand this method of socializing. As an outcast in school I learned that being different was not necessarily something to boast about. It got me sitting and eating lunch alone and shoved in a locker. Luckily enough I was tiny enough to fit comfortably inside a locker. Totally could have taken that skill to the circus where I could have been one of those gorgeous girls that contort themselves in a small box for a magic trick.
I viewed Jesse as normal. Why didn’t everyone else? I loved to hang out with Jesse as he shared his beautiful poetry with me. He was an exceptional writer and was beyond his years as far as maturity goes. I always felt like he was teaching me something. He shared his poetry and I shared my music. I guess we kind of fed creativity off one of another. Perception for me was something that came natural. I saw the bigger picture in people regardless of what I saw on the outside. But I believe that perception is also something that can be taught and developed over time. Just like anything we want to be perfect in life. It
takes constant mental recognition. It takes evaluation and analysis. And lastly and most importantly, it takes action. We can learn and educate all we want but what good is that if we never apply it appropriately?
On September 16th 2019, I was diagnosed with multiple sclerosis. I had been experiencing symptoms for years and ignored every sign that was thrown at me. I made the excuses of that’s just what bodies do, it’s stress and ptsd, I’m getting older. You don’t typically start to take action until things get serious. Being diagnosed with a chronic illness and disability that would eventually put me in a wheelchair at 30 years old was arduous and shocking. I had plans to accomplish. I had places to go and people to see. And for about 3 seconds, I truly didn’t believe I could do any of those things then something changed. A moment of determination came over me and God reassured me this was my fight or flight moment. I was calm. I knew what my purpose was. I had no clue how to get there but I was determined to figure it out.
As the ability in my left leg worsened and my mobility was changing daily it was suggested by my neurologist to invest in a walking cane. I was basically trashing my right side for over compensating for the lack of use of my left. Talk about back issues. I found the cutest one I could find on Amazon and started utilizing it to improve my mobility. Don’t even get me started on how strange looks a fashionable 30 year old gets when she’s using a walking cane. You would have thought I was walking around naked. I could now understand the opposing side of how Jesse felt. My memory took me back to the 4th grade and suddenly I knew how it felt to be stared at not just because you’re a crazy art kid and were different, but because you had a disability that people did not understand or know how to react to. It frustrated me to no end to hear comments from total strangers by the way; “Oh did you get into an accident? How did you hurt yourself? Oh what happened to you?” You can’t imagine how bold people can be when it comes to the invasion of someone else’s personal life and personal space.
I was irritated and offended at first as anyone going through a total life change would expect to feel but then again I knew that I didn’t want to feel this way every day of my life. I was still adapting emotionally to my new normal and every time someone asked
me about it, it was like taking a bullet of reality. I didn’t want to feel targeted. I didn’t want to feel like a victim. I started responding back with the truth. “I have multiple sclerosis which affects my neurological system and affects my mobility”. Some people I could tell were absorbing what I said and others you could see were confused and unable to mentally process such an admission of honesty. No it’s nobody’s business but how can we hope to change the overall perception of how disability is viewed if we are too prideful of our own privacy to do the dirty work and get real. My medical status is no single person’s business but as far as advocating for disability as a whole, I owe it to every single person living with a chronic illness, invisible illness or disability to share my story. That is why I share. That is why I embrace my reality and tell others. It is not attention seeking.
Trust me. I’m an old theatre kid. I can throw on my tap shoes in the frozen food aisle of a grocery store and get all the attention I want. I share to educate. I share to widen the lens of perception.
Society is programmed to associate disability with a wheelchair. Having lost limbs. Having a physically crippling defect. We see this everyday with the national symbol for handicap. A blue and white symbol of a wheelchair and a stick figure. That is what we have to go off of. We are not at fault to think this is the only way disability can reveal itself. It’s how we have been taught. By sharing your story and using your voice you are not only allowing others to be open to a new perspective of what disability can look like but there is also a sense of empowerment to this. You can’t tell me for a second that it doesn’t feel good to have an impact on how someone views something? To be able to take partial credit for a domino effect of change. To be someone that was dedicated enough to a certain cause to be a part of the change it is capable of. Again, you can’t preach about change if you are not willing to get your hands dirty.
I am 31 years old now. I have multiple sclerosis. I walk a little funny now and usually have to take breaks often on longer stretches of travel. I struggle daily with bladder control and can’t trust a sneeze. I love fashion. I love the arts. I love to express myself and embrace my youth. I’m a Wife. I’m a Mother. I’m a musician and singer/songwriter. I’m obsessed with fishing and consider myself one heck of an angler. I love playing with makeup and fashion. When you fall into the category of being disabled it’s as if people automatically think you should be unkempt. That you all of a sudden wear orthopedic shoes and never wash your hair. I know this because I’ve been told “Wow you look so good!” Where I casually and realistically replied with “Well, MS Don’t make ya ugly!” I will never stop dolling up. I will never stop implementing fashion into my mobility aids. I will never stop being me. Yes I have multiple sclerosis but I am still me. People would
ask me in the beginning of my journey with body art “What are you going to do when you get older?” As if the second I hit 70 years old I start to wear ColdWater Creek clothing and take up knitting. As though the moment I’m categorized as a senior citizen the core traits of what make me me fly out the door and I’m all of sudden obsessed with Bingo. Ok scratch that because Bingo is awesome! I love playing actually. Yes we change and develop new traits, we embrace new hobbies, we grow and mature but I am and will always be an artistic personality. I will always be outspoken. I will always see the beauty in people regardless of what is on the outside. Disability is the same here. My abilities may change. I may one day be in a wheelchair but guess what? I’m going to spray paint that baby with glitter and maybe install speakers to rock out on it.
I am currently in the process of launching an organization that specializes in the customization of mobility aids. When I was told I needed to use an AFO to help with my left leg I knew I was not going to sacrifice fashion for this new tool. I did my homework. Contacted the manufacturer. Found out what materials the brace was made out of and thought outside the box. I contacted auto body shops until one shop responded willing to take on my strange project of professionally painting my AFO. Once the completion was a success I felt empowered. I felt confident. I felt like myself regardless if I had a leg brace on. I was determined to make others feel this exact same way. To feel confident and empowered and to be proud to wear and utilize their mobility aid. Why should I be the only person who gets to reap the rewards of this feeling? My organization will offer customization to any mobility aid; walking canes, braces, helmets, walkers. There is no limit to the size or weight either as parts can be shipped to be customized that may go on a mobility scooter or wheelchair.
My goal here is to raise awareness. To offer perspective to think outside the box and look at the bigger picture. When you look at someone with a disability to not have the automatic reaction of pity but to flip that mentality into empowerment. To see a warrior. To see one heck of a strong person that is living their life, just like we all have to but with an obstacle. That is a beautiful thing. That is empowering. That is strength. That is the power of perception.
“When you change your perception, you change your reality.” – A Hot MS