While I am aware that the movie “The Greatest Showman” has had some controversy, especially within the disabled community, I would like to share why I like this movie, and more importantly why the song “This is Me” really speaks to me. While I don’t condone all of the history surrounding the circus, I do understand the meaning behind the movie “The Greatest Showman”. Many people believe the movie portrayed P. T. Barnum in a more positive light than what he was like in real life. Many in the disabled community regard this movie as something that glorifies putting people with differences out on display as “freaks”. Regardless of your feelings toward the movie, let’s try to remember that it is just a movie. It is based loosely on historical facts, but it was made in order to entertain people. Leaving history out of the conversation, this movie shows a man who saw past people’s differences, and in the end became friends with them. He did not always treat them well. He left them out of “high society” gatherings, spent long periods of time to focus on someone prettier and “genuinely talented”. He left his family alone, and at one point forced them to return to his in-laws because of his negligence of his family. He was not portrayed as a saint by all means, but in the end he found out who he could truly count on, his family and his performers. His performers eventually saw him as part of their family, as he finally reciprocated those feelings toward them. Whether or not this is historically accurate, it paints a picture of how we as a society can learn to treat those who may seem different from us.
One song in particular from the movie that really spoke to me was “This is Me”, performed by Keala Settle. This is me starts out talking about how she is “not a stranger to the dark”, and how she was told to “hide away, they say, ‘Cause we don’t want your broken parts”. The beginning of this song speaks to my past. My past with doctors, peers, and professionals who would not listen to my complaints of complicated, unexplained symptoms. They refused to listen to me, they called me a “faker”, they told me that I was making it all up for attention. I felt as if they all just wanted me to “hide away” because they did not want to deal with me anymore. In my experience hearing stories from others in similar situations, this is how society and the medical profession has a tendency to treat those with unexplained symptoms which reasons cannot be detected on any specific tests. They are cast aside by society, just like the performers in the circus were.
The song continues to state, “I’ve learned to be ashamed of all my scars. Run away, they say, no one will love you as you are.” This shame that she sings about is what I felt for 15 years prior to finding a diagnosis. I felt ashamed that my body felt the way it did with no explanation. I tried to hide my pains, my fatigue and my feelings, because if I let them show nobody would believe me anyway. I felt as if I would never find anyone who would truly accept me as I am. I let the doctors, my peers, my teachers, and my community tell me how I was supposed to be feeling, and it cut like knives when I felt as if nobody, not even my own family, could understand how I felt.
It took 15 years to get a diagnosis. 15 years of going from one doctor to the next, having test after test completed, and being told it was all in my head before I finally found the doctor who listened and understood. He knew what tests to run and he found my rare diagnosis. It wasn’t until that point that I finally felt I had my life back. I could finally be my authentic self. I could finally explain to people what I was going through, and even though my diagnosis is rare and most don’t understand it all, now they listen. They try to understand. They try to empathize, and they try to learn more about the strange illness with which I am living. The next lines of the song finally came true for me: “But I won’t let them break me down to dust. I know that there is a place for us, for we are glorious.” I had volunteered for disability organizations since I was 16 years old. I even played on a wheelchair basketball team for a few years in high school, but I never really felt like I fit in anywhere. I didn’t have a diagnosis, so I didn’t have a disability. But, I wasn’t able to fully function either, and therefore I wasn’t able-bodied. I was stuck in limbo, but I tried to never show my emotions about it. I let all those emotions stay inside me, and it made me an angry, bitter person. But, after I received my diagnosis and everything finally made sense, I felt like I had been reborn. I finally had validation! I finally had answers! I could finally answer the question, “What is your diagnosis?” It was a liberating! I no longer let anyone “break me down to dust” because I knew that there was a place for me, and it was GLORIOUS!
Even though I now have a diagnosis, and the backing of the medical community, I still go through times of prejudice and injustice due to my disability. I’m still called names and I’m still accused of “faking” when people see me stand up from my wheelchair. I struggle with the same barriers that all others with disabilities in America and around the world face. However, my new outlook on life has given me the voice to say the next lines of the song, “When the sharpest words wanna cut me down, I’m gonna send a flood gonna drown them out. I am brave, I am bruised, I am who I’m meant to be. This is me.” I have a voice now. I am able to stand up to oppression, ignorance, and injustice. The true me, the fighting me, is back. My disability made me have to stop working because I could no longer handle working full time. It took away 18 years of education, it took away my degrees, it took away my ability to share my talents with the working world. But, “Look out ’cause here I come. I’m marching on to the beat I drum. I’m not scared to be seen, I make no apologies, this is me!”
I had to reinvent myself once again. I could no longer provide the services I provided in the years I was a social worker and probation officer. I could no longer use my skills and education to help others in the professional world. I had to find another way to make an impact, another way to find purpose in my life. That is when I found two things that helped me to reinvent myself: Power Wheelchair Soccer and the Joseph Maley Foundation. These two programs helped me to take my love of sports and love of helping others to new levels. Last season I joined the Hot Shots power soccer team. This team is comprised of multiple children who came to look up to me as a mentor. I helped them to overcome their own struggles with insecurities, just as I had when I was close to their age. I helped them to understand the importance of teamwork and sportsmanship. Because of my personality, I became well known throughout other teams, and made many friends from all over the country. This past season, I won the Sportsmanship Award for the USPSA Founders Cup given out by the referees because of the way I taught my kids to play the game, and the way I choose to play. We were the worst team in the nation based on wins, but we made an enormous impact because of our spirit, and the Hot Shots are one of the most known and loved teams in the U.S. No matter by how much we were losing, we still had fun playing the game. This is the type of attitude I want these kids to take into their regular lives. No matter how much life tries to break you down, know that you are glorious and keep playing the game with your head held high! Although I had to leave the Hot Shots this season due to an opportunity to join a new team (the Circle City Renegades), which is closer to my home, I will continue to cherish my time with the Hot Shots, and continue to root for them when I am able. I will take my sportsmanship attitude to my new team, and help mold our new young players.
Another way I reinvented myself was to join the Joseph Maley Foundation as a volunteer. See my prior post, “Why I Choose to Volunteer for the Joseph Maley Foundation“ to learn more about the multitude of services they provide to help people with disabilities in and around the Indianapolis area. While I participate in multiple volunteer projects with multiple Joseph Maley Foundation programs, the one I work with most is the disABILITY Awareness program. In this program, I provide multiple functions, but I mostly speak to 6th grade students about “Seeing the person behind the disability”. However, I don’t just talk about disabilities to these students. This is a precarious age group. Many of them are struggling with finding their own identity, many struggle with bullying, and all of them have their own personal struggles to overcome, whether they want to admit it or not. Bullying is a very important topic with youth these days. The incidents of bullying in schools varies, but there is bullying prevalent in every school in then United States. According to one study by Hawkins, Pepler, & Craig, 2001 from York University and Queens University, more than half of bullying situations (57%) stop when a peer intervenes on behalf of the student being bullied. There have only been 10 studies conducted in the U.S. regarding the incidence of bullying in children with disabilities. However, according to Marshall, Kendall, Banks, & Gover (Eds.) (2009), students with disabilities are two to three times more likely to be bullied than their non-disabled peers. (Disabilities: Insights from Across Fields and Around the World; Marshall, Kendall, Banks & Gover (Eds.), 2009. This is why I choose to incorporate the importance of acceptance of differences, understanding of each other’s needs, and the importance of getting to know the person behind what you see on the outside when I talk with my students through the Joseph Maley Foundation program.
Whether a person has a disability or not, we each go through trials and tribulations throughout our lives. We each have obstacles to overcome. We each have hurdles to climb to get to where we want to end up in life. This is where the next part of the song rings true. “Another round of bullets hits my skin. Well, fire away ’cause today, I won’t let the shame sink in. We are bursting through the barricades, and reaching for the sun (we are warriors), yeah, that’s what we’ve become.”
When I tell my story, it may give some hope to those kids who are outcasts, bullied, or feeling lonely. It may give them hope that things do get better, and life does go on past school. This is also why I not only spend my time talking about disabilities in my speeches with the Joseph Maley Foundation. I talk about looking past what you see, not judging a book by its cover. If 57% of bullying incidents are prevented by peers, then we need to be focusing our anti-bullying campaigns on the students! If I can reach just one or two children from every class I speak to, and convince them to step up when they see someone being mistreated, then we can increase the number of prevented bullying even further. If I can convince just one or two children in each class to reach out to someone they may have previously avoided, or even bullied, and try to get to know them further, then I have done my job. This is my new purpose, to encourage, inspire, and mentor kids with and without disabilities to learn to live their lives without fear of being themselves. The song states, “And I know that I deserve your love, ’cause there’s nothing I’m not worthy of! When the sharpest words wanna cut me down. I’m gonna send a flood, gonna drown them out. This is brave, this is proof, this is who I’m meant to be. This is Me!” I’m no longer afraid to be seen. I’m no longer going to let their sharp words hold me down. “I am brave, I am bruised, I am who I’m meant to be. This is ME!