Communicating Disability

Inspiration Porn

Throughout the semester, my classmates and I have touched on several different topics pertaining to disability, including different types of prejudice, what type of language should and should not be used, and inspiration porn. All of these topics allowed many of us to gain insight that we most likely would not be introduced to within our college careers. Throughout the discussions of these topics, inspiration porn seemed to resonate the most with me because of how misunderstood it is by many people. Though there is not a specific definition for inspiration porn, I hope giving examples throughout history will encourage viewers to better understand what it is and more specifically how to avoid participation.

Starting with premodern examples of inspiration porn, we are brought to the late 1100’s with Saint Mary of Oegines. Mary was a religious public figure in Nivelles, and battled with mental illnesses throughout her life. As told by Kisha Tracy and Alicia Protze, Mary struggled with a handful of different self harming tendencies: “In her ​Life,​ St. Mary of Oegines is described as self-harming, especially through fasts to the point of destroying her body, cutting, and suffering of excessive weeping and mood shifts.” While dealing with these, Mary believed that they in fact made her closer to God and were in a sense health habits for her.

An example of Mary’s mood swings are perfectly depicted when she is told by a priest that her weeping is deemed as unnecessary, but she claims that she could not help herself from weeping because of the immense compassion she felt for God’s suffering. Mary would often place herself in God’s shoes and push herself past unhealthy boundaries to show her devotion, such as cutting the bottom of her feet and fasting for upwards of a month. An example of her undying devotion with cutting her feet is described by Tracy and Protze: “Mary, after walking through a town which filled her mind with sin, cuts herself’‘asking for a knife from her maid, when she was outside the town, would have cut the skin from her feet’‘. It is to a certain extent an individual mimicking of Christ’s wounds, and, if so, then Mary’s cutting is presented as a holy act of cleansing" (220). This type of “religious” behavior is commonly known as affective piety. Mary’s struggle with affective piety was perceived by society as her being devoted and as a role model.

Being a role model within her society back in the 1100’s allows us as viewers to make the connection that Mary’s life can be viewed as inspiration porn. Though the term "inspiration porn" was not considered at the time Mary was still alive, we now realize that all of her personal destructive ways were in fact seen as accomplishments of sainthood by outsiders.

The next public figure we can discuss is Perla Ovici and her family. The Ovici family barely lived through the horrors of the Holocaust in the concentration camp at Auschwitz. As told in my artifact entry, their family consisted of: “a family of twelve, with 9 siblings, 6 of which were dwarves and 3 were averaged sized people. Her mother, Batia, was an average sized woman, while her father, Shimshon Eizik, had dwarfism." Having dwarfism, being Jewish, and living in Hungary, which was then taken over by Germany, was an extremely lethal combination for any family. So how were they able to survive years in the inhumane concentration camp?

The answer lies within Dr. Josef Mengele, who was an experimental doctor at Auschwitz. Mengele had a scientific obsession, as well as more inappropriate one too, with the younger Ovici girls. This obsession seemed to generate from Hitler’s fascination with those who had dwarfism, making Mengele want to impress Hitler with this family. An excerpt from my catalog can give us better insight on this matter: “The angry voice Perla and her family heard was Dr. Josef Mengele, also known as the “Angel of Death”’‘The infatuation with Perla and her family, from Dr. Josef Mengele escalated quickly and was very intense. He would do bizarre and disturbing experiments on each and everyone of them, inflicting intolerable pain as if it was his second nature. Mengele would bring them to the breaking point, let them recover, all to do it again in a few days. Some experiments included the injection of chemicals straight into their eyes, blinding them, as well as for the women, having their uterus’ scraped and pierced for many unknown reasons.” There was no clear reasoning for these experiments, and Mengele never disclaimed what data he genuinely wanted to collect.

Aside from the scientific reasoning that the Ovici’s were allowed to live, they were also used for entertainment for the soldiers because of their musical background. Before being sent off, the Ovici’s managed their group called the Lilliput Troupe, which was another reason they were kept alive for so long.

Now to relate this into terms of inspiration porn, we must find the deeper connections. Well, since there is no true definition of inspiration porn, it truly is up to the viewer to interpret just where they fall in this “category.” In my own opinion, the Ovici’s were most certainly used as inspiration porn for a multitude of reasons.

The first reason is that they survived Auschwitz by being prioritized and favorited by a higher power. This power was Josef Mengele, and even though he poked and prodded the undeserving family, he still made them feel as though they were special and a part of his family. In the documentary Liebe Perla, Perla states: “If the judges had asked me if he should be hanged, I’d have told them to let him go,” she recalled. “I was saved by the grace of the devil; God will give Mengele his due” (Kelly). This shows the hold that Mengele had on the family, as well as how he “saved” them. Being shown kindness by a Nazi while being Jewish was nearly impossible, but the Ovici’s were spared because of their disability.

Another way the Ovici family was used as inspiration porn was because of the documentary that was created around Perla and her survival. Thousands of other Jewish prisoners made it out of the concentration camps alive, yet very few were taken interest in and had their stories shared. Was Perla chosen because of her disability? Was it because of the fact that Dr. Mengele took special interest in her family? Or was it both? These are the questions we absolutely must take under consideration when we put a spotlight on individuals no matter what their status in life.

In order to take matters under consideration, we must also find ways to avoid inspiration porn, via social media or any type of public outlet. Since I am not an expert on how to avoid inspiration porn, and no one is, I turned to an article from Forbes magazine. This article by Andrew Pulrang gives a few examples that can steer writers or anybody in a better path when talking about disability. The first insightful advice Pulrang gives us is: “Stories about disability should always include ideas, impressions, and/or direct quotations from actual disabled people. There is simply no excuse not to. If a particular disability makes communication difficult, use whatever tools work best for them. If meaningful inclusion of disabled people isn’t possible, for whatever reason, then don’t do the story." This quotation shows the dire importance of how those with disabilities must have a say in any type of piece that is created around them, otherwise it is not authentic and can be fabricated in a way that is insulting or incorrect.

The next piece of advice Andrew Pulrang shares with us may be one of the most important “guidelines”, and it is one that I most certainly try to consider with when writing. It states, “Don’t speak of disability as an affliction, a burden, or a tragedy. Don’t talk about disabled adults as if they are children, and never refer to the idea of someone having a “mental age” less than their chronological age. Give a realistic picture of what disability entails, but don’t over-dramatize it, and remember to also show the tools and supports the disabled person uses every day to function." Within writing pieces it should never be made a point that those who have disabilities are at a disadvantage, because they most certainly are not.

The simple fact of the matter is that everyone lives their lives in different ways, so why should it be seen as a tragedy if those who are disabled utilize different equipment or have other ways to create solutions? As a society it is imperative that we treat everyone as equals, and especially we must produce media that is accurate and not insensitive or embellished.

The Media vs. Athletes with Disabilities

Fiona Campbell, Student, Fitchburg State University

At what point do articles about athletes become about the disability rather than the person? Brianne Jones was a skier from Fitchburg who was diagnosed with cerebral palsy, hindering her ability to walk. She relies on special equipment that allows people in wheelchairs to ski. While Brianne’s story and achievements are incredible and should be discussed, it is important to ask ourselves: are these athletes being noticed by the media for their achievements or their disability? It’s impossible not to talk about the challenges that are faced with their disabilities. In fact, to discuss such a matter can be quite inspiring to others with disabilities. However, the media has to go about it in the right way.

The English Federation of Disability Sport worked with ComRes to create a research plan in order to study how the media portrays athletes with disabilities. As a result, they created a guide on how these athletes should be talked about. The first step was to offer an explanation of the sport, as sports made for people with disabilities sometimes have completely different rules. On top of that, there are also many additional sports in the Paralympics, such as goalball. In order to build support and viewership for these types of sports, it is important to understand them. The second point this guide makes is about the story. Instead of trying to create an exploiting headline, reporters should focus on the athlete rather than their impairments. They should also only display relevant and accurate information. Thirdly, the style and placement of the article is important. To ensure inclusivity, these athletes should be side to side with those who do not have disabilities. Language is also an important factor, making sure that the article is up-to-date with the politically correct language. Finally it is important to use all different forms of media, not just relying on the creation of online articles. Newspaper, television, and books are all important forms of media as well (Horne).

It is important not to glorify people with disabilities. Everybody has obstacles to overcome and for some people those obstacles are disabilities. For these athletes, their disability is a part of them and their story, however it doesn’t define them as people or their accomplishments. Just like with person-first language, the person and their accomplishments should always come first.

In an article written about Tammy Marcinuk, Doris Kirkpatrick discusses Tammy’s incredible accomplishments as a skier despite being born deaf. While the author does a good job making the article about Tammy rather than her disability, Kirkpatrick brings up an interesting point. Tammy won five gold medals in the Deaflympic games and was an incredible skier, therefore who's to say that she couldn't have competed in the main Olympics (Kirkpatrick). If Tammy was good enough to compete in the Olympic Games, then that opportunity was taken away from her. In fact, there have been many Paralympic athletes that have actually beaten their Olympic counterparts. In the 2016 Rio Paralympic 1500 meter race, four runners with visual impairments had a better time than any of the runners in the Olympics (Mic).

However, if the Deaflympics or Paralympics didn’t exist and an athlete couldn’t compete in the Olympics as a direct result from his or her disability, then that opportunity would never exist. There's no doubt that both the Paralympics and Deaflympics give people with disabilities the opportunity to compete in sports. So the question is, should they be separated from the Olympics?

The Paralympics should be just as important as the Olympics. As a society we have seperated women's and men’s events because there is an uncontrollable biological disadvantage between women and men. In the Olympics, men's and women's events are completely equal, each having the same amount of broadcast on networks. Disabilities are an uncontrollable disadvantage, so why shouldn’t the Paralympics be on the same level as the Olympics? It doesn’t matter how physically disadvantaged you are; it takes the same amount of practice and determination to master a skill. To demonstrate that skill, in the 2016 Paralympic Opening Ceremony, Aaron Fotheringham flew down a ramp and landed a flip in his wheelchair (Mic). However, only a few people have actually seen this moment.

The first glance of the Paralympics was in 1948, when a man named Sir Ludwig Guttmann organised the competition for World War II veterans with disabilities. The first official Paralympic Games were in 1960, where athletes of all disabilities were allowed to compete (“Paralympic Games”). Support for the Paralympics is growing immensely. In the 2016 Rio Olympics, NBC and NBCSN broadcasted 66 hours of events for the first time in US history, although when you compare that to the 6,755 hours of airtime that the Olympics got, it’s obvious to see that there is still a long way to go (“Media Coverage Should Not Be the Challenge.”​). ​Hopefully if the air time continues to increase at the rate it is, the more people will begin to watch. However, proving to society that the Paralympics is just as valuable as the main Olympics will be a long and strenuous fight.

At the very least, it is common to hear about the Paralympics, however the Deaflympics are almost never talked about. The Deaflympic Games actually came before the Paralympics, with the first games held in 1924. The Deaflympics were started by Eugène Rubens-Alcais who was the President of the French Deaf Sports Federation. Not only were the Deaflympics the first set of games for people with disabilities, it was also only the second international event-style competition (“History.”).

In the London 2012 Olympics and Paralympics, the British government spent a combined total of £9 billion on funding both the Olympics and Paralympics. Meanwhile UK Deaf Sport only received an annual amount of £42,000 until 2008, when it was withdrawn (Swinbourne). The Paralympics only receive less than 1⁄5 of the total funding of the Olympics, which is not fair on it’s own, however the Deaflympics are forced to try to raise the money all on their own. The USA Deaf Sports Federation released this as part of their statement in an attempt to raise money: “Athletes spend too much precious time and energy trying to raise money just to be able to compete. The focus is not on strength conditioning or refining techniques, but how to fund their dreams. Coaches who volunteer are willingly giving up a large chunk of time for free. Fundraising on top of coaching and generating an income means our coaches have to juggle several jobs without the ability to give athletes the full 100% attention they need and deserve” (“Support USADSF”). This statement shows how much the coaches and athletes care about this organization and the Deaflympics. It is extremely unfair that the Deaflympics are unable to get this funding from the government which is why it is important that the Deaflympics are shown as much as the Paralympics and Olympics. The media rarely ever talks about the Deaflympics and not many people are even aware of the competition’s existence. Part of the reason why the Deaflympics are so important is because athletes who are deaf can’t actually compete in the Paralympics unless they have another disability. So these athletes are left out with not really having a home in the Paralympics or Olympics. Therefore the Deaflympics deserves just as much representation and funding as the other competitions.

While big-named athletes are often separated from athletes with physical disabilities, it’s important to remember that mental health is also an important topic in the sports world and can affect anyone. The media always focuses on physical abilities that prevent important athletes from participating in ther sport. However, they often neglect the mental toll and anxiety that a lot of these athletes struggle with every day. A study showed that “33% of all college students experience significant symptoms of depression, anxiety or other mental health conditions. Among that group, 30% seek help. But of college athletes with mental health conditions, only 10% do” (“Mental Health and Athletes”). Since athletes are often portrayed as physically strong, people tend to assume that they are emotionally and mentally just as strong. However this is not the case, as 35% of athletes experience some sort of mental illness. When people like Micheal Phelps and Kevin Love come out and share their stories with mental health, it let’s athletes know that they aren’t alone and inspires them to seek help. It is important for the media to talk about these kinds of disabilities with athletes as it’s a subject that is often ignored in sports. Discussing these issues has a positive impact as Micheal Phelps says, “Over the past couple of years, I have become a lot more open about my struggle with depression and have shared my mantra that “it’s ok to not be ok.” I am so grateful that I’ve been able to positively impact the lives of those struggling with their own mental health by simply sharing mine” ("Dream Plan Reach").

The media needs to help normalize disabilities as well as bringing awareness to them. It can be a challenging feat as disabilities should not be ignored, but they also should not be glorified. It’s also important to represent athletes with all different types of disabilities, from people who are deaf to those struggling with mental illnesses. We need to recognize these incredible athletes, but also understand that their accomplishments stand on their own merit. Their achievements are just as important and impressive as those without disabilities.

“Dream Plan Reach.” ​Michael Phelps Foundation​, michaelphelpsfoundation.org/.

“History.” ​Deaflympics,​ www.deaflympics.com/icsd/history.

Horne, Barry. “English Federation of Disability Sport Media Guide: Reporting on Disabled People in Sport.” ​ComResGlobal​, Aug. 2016, www.comresglobal.com/wp-content/uploads/2016/09/15549-EFDS-Sports-Journalists-Media-Gu ide_FINAL.pdf.

Kirkpatrick, Doris. “Mettlesome Maid from Fitchburg.” ​Skier Magazine,​ Oct. 1968.

“Media Coverage Should Not Be the Challenge.” ​YourCommonwealth,​ 13 Oct. 2016, www.yourcommonwealth.org/social-development/human-rights/media-coverage-should-not-be-t he-challenge/.

“Mental Health and Athletes.” ​Athletes for Hope​, 16 May 2019,www.athletesforhope.org/2019/05/mental-health-and-athletes/.

Mic. ​"Why Isn't There More Paralympics Coverage from Rio 2016?​" 15 Sept. 2016, www.youtube.com/watch?v=d1J7D_vTC68.

“Paralympic Games.” ​International Olympic Committee​, 23 Sept. 2019, www.olympic.org/paralympic-games​.

“Support USADSF.” ​USA Deaf Sports Federation,​ 17 Aug. 2016, usdeafsports.org/together-we-win/letter/.

Swinbourne, Charlie. “The Paralympic Games Is a Missed Opportunity for Deaf Athletes | Charlie Swinbourne.” ​The Guardian​, 6 Sept. 2012, www.theguardian.com/commentisfree/2012/sep/06/paralympic-games-deaf-athletes.