Simone Sistarelli

Hip Hop dancing for Parkinson’s patients: an interview with Simone Sistarelli, founder of “Popping for Parkinson’s”

Editorial Article

Editorial Article

Simone Sistarelli has made his dream a reality. Combining his passion for dance and his urge to help people in need, he founded “Popping for Parkinson’s”, a Hip Hop dance class for patients with Parkinson’s disease. Simone observes the benefits of Hip Hop dancing on his students on a health, social, artistic and personal level. However, more scientific evidence is needed to demonstrate the positive effects of dancing on Parkinson’s patients on different levels. Simone’s project has gained a lot of attention and has received important funding, allowing him to offer it to patients in the UK and Italy for free. What made this possible was that Simone always believed in his idea. Driven by his passion for Hip Hop and the benefits of his dance classes on patients, he continues to expand his project.
 
Simone Sistarelli’s background lies in dancing, in which he holds a degree from the Trinity Laban Conservatoire of Music and Dance. He founded “Popping for Parkinson’s” in 2015, when he first offered a Hip Hop class to Parkinson’s patient networks in the UK for free. His classes received overwhelmingly good feedback and had impressive positive health effects on their participants. In our interview, we spoke to him about his passion for dancing and Hip Hop, the origin of the idea behind his project, the effects the “Popping for Parkinson’s” dance classes have on his students, and how they might be explained scientifically.
 

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Popping for Parkinson’s Logo, @poppingforparkinsons


Q: What is Hip Hop for you? How did it inspire you in your personal development and professional career?

A: I discovered Hip Hop by chance, because I discovered dancing fast by chance. As soon as I had discovered Hip Hop culture, I fell in love with it. It took me some time to explore and to get to know it fully and deeply, but I knew straight from the beginning that this culture was something that resonated with me on many different levels. In particular, Hip Hop gave me the power to be myself and did not allow circumstances to define who I was. Exactly like the creators of Hip Hop from the 1970s, who did not let their life circumstances determine their future. However, I am aware that the people who created Hip Hop culture had a background of violence, drugs, abuse and racism, while I consider myself as very privileged without having to face these kinds of struggles.

In terms of personal development and professional career, I owe everything to Hip Hop. As soon as I learned about Hip Hop culture, I knew I wanted to do something linked to it. I have no idea what I could possibly be doing if my life would have taken a different route. I wanted to share the fire, the love, and the passion that I have for this culture with as many people as possible. I was so amazed by the impact this culture had on my life, that I thought that there could be a chance for so many other people to get a better life thanks to Hip Hop. My aim is to elevate the people around me just as Hip Hop elevated me in the first place.

Q: Was there something about the Hip Hop movement you were dissatisfied about?

A: I am doing research every day, trying to get a better understanding of what Hip Hop is, what it was, and where it comes from. I am interested in all the many aspects that are linked to Hip Hop and its creation from a political as well as from a historical point of view. Even though I love Hip Hop culture, there are many aspects concerning the practicality and the eventuality that I was dissatisfied about. One point of concern was the representation of Hip Hop culture on media channels. I believe that up to 95% of the time it is actually not a true representation of what Hip Hop is, which impacts the image of Hip Hop in the general population. Even people close to me, like my parents, had wrong views about Hip Hop, associating it to certain moves and dress codes. When in fact, there is so much more to the Hip Hop culture, which goes way deeper than the superficial attributes represented by the media. I wanted to convey the real message and discipline of Hip Hop, going against this misinformation. Another point of dissatisfaction was that the whole industry is based on battles, contests, and choreographics. I come from a dance background and I specialized in the dance area of Hip Hop culture, and even though I understand the nature and the tradition of battling in Hip Hop culture, I always felt that battling in that sense was not for me. I also understand that the industry has to be sustainable and that battling is probably the only way of sustainability that was explored until now. I still have to recognize that it is thanks to the battles that a lot of correct information was spread, and the Hip Hop message was brought to people in a better way. However, I really did not enjoy the battling experience in that sort of context and I always felt like I needed to find a future in Hip Hop dancing without being a battle dancer.
 

Red Bull X Popping For Parkinson’s

Q: Where does your interest in Parkinson’s come from?

A: My grandad had Parkinson’s disease, which means that I definitely have a personal connection with it. My grandad passed away when I was 8, and yet, when I think about him, my mental picture is never still. It is always moving; he was always shaking so much.

Q: “Popping for Parkinson’s”: how did you come up with this brilliant idea?

A: On an artistic level, one of my light bulb moments was when I realized that people with Parkinson’s shake without the music and the beat. And popping dancers like me train their whole life to shake to the beat. This was the first moment, in which I created a connection between popping and Parkinson’s that initiated the project. After my previously mentioned light bulb moment that initiated this connection between Hip Hop and Parkinson’s, I studied the ‘dance for Parkinson’s’ field, with all its techniques and methodologies, so that I could come up with my own version of it. I realized that there was nothing available that was based on Hip Hop languages and techniques. Popping is what I do and know best, so I wanted to share that in addition to the passion that I have for dancing and for Hip Hop as a culture. It just made sense. To put the idea in place practically, I sent out emails to many Parkinson’s networks in the UK telling them about myself and my idea. I explained my logic and the concept, to make sure they would not think I am a random guy wanting to do some crazy stuff, and I offered my class for free to anyone who was interested. Sarah Webb from the South London Young Parkinson’s Network (SLYPN) replied and wanted to give it a try. We met in July 2015, set up the first Popping for Parkinson’s class and we have not stopped ever since.
 

Simone Sistarelli
Simone Sistarelli during a class @PoppingforParkinson’s

For me, a great thing about dancing, and especially Hip Hop dancing, is that your background, sex, gender, religion and orientation do not matter. Every student comes with expectations: then they study, sweat and practice, they express themselves, and this is all that counts. Additionally, differences are celebrated in Hip Hop, and the power of this celebration is incredible. The great thing is that dancing has no side effects. Patients with Parkinson’s usually take lots of medications, but the dancing allows them to be human again, and not patients. Students, not people with a disability. People can only gain benefits from participating in a dance class by moving, and socializing, and by doing something artistic. I did not only have my personal relationship with Parkinson’s, but also an artistic one.

Q: What is the current scientific evidence that dancing ameliorates Parkinson’s symptoms? What new (perhaps unexpected) ideas and solutions is your practical work bringing for patients? 

A: The current scientific evidence is undeniable. Even the World Health Organization (WHO) used dance for Parkinson’s as a case study to show that programs that are offering dance classes to people with Parkinson’s are incredibly effective on many levels. And it is excelling in the field of art therapy in the most general sense. Why is that? Because dance is intrinsically a physical activity, and people who participate in a physical activity get benefits on many levels. These benefits are applicable to anyone’s life, but they are especially important for people with Parkinson’s. Dance is not only a physical activity, but it additionally has a psychological and artistic side on a social and spiritual level. Dancing is much more complex than just moving in space. On a psychological level, dancing can improve mood and quality of life. It allows participants to see themselves as expressing bodies, rather than souls that are caged in a body that is degrading and not responding anymore. It creates a shift in perspective, and it allows empowerment. It also brings confidence, and people accept themselves for who they are. Suddenly you are not trapped in a cage, but you have the tools to paint your own art. You start seeing your body and yourself in a completely different way. You gain control over your body because you learn how to dance. Practicing skills affects the way you think about your life, and you gain back control over your life. Hence, dance not only has an effect on people with Parkinson’s, but it also has an affect (defined as “an inner disposition or feeling rather than an external manifestation or action” according to the Oxford English Dictionary (OED), editor’s note). And that is why it is so powerful. Physical activity might have an effect on participants, whether that effect is physical or psychological. But what dance has more of than normal or generic physical activity, is the affect. People’s lives are affected by participating in dance classes. One of my students in New York actually once wrote to me in a feedback form that he feels like my dance classes are giving him back the control over his body that he has been losing because of Parkinson’s. He also mentioned the “Wows” that he is getting from his grandchildren when they see him dance. And that is the affect I am talking about. Suddenly this person has a completely new relationship with his grandchildren, and they see their grandad like someone really cool. This kind of effect is really, really powerful.

When it comes to science, it gets very tricky because all the research that is available points towards the fact that dance is awesome and creates loads of benefits on many levels, but there is so much more to do when it comes to understanding the real effects and affects of dance on people with Parkinson’s. The current tools that are used to measure the impact of dance interventions on people with Parkinson’s are not sophisticated nor complex enough to be able to register the multifaceted aspects of dance as an activity in general. On a personal level, I know that dance is awesome, and I see that every time I have a class. People walk into the space with lots of difficulties and with walking sticks, but after the dance class people keep forgetting their walking sticks in the room. This happens because they feel better and they are literally new people. Because the class is not about Parkinson’s. The attention is shifted to the artistic side, the expressive soul rather than the disease, and that has both a huge effect as well as affect. It is really tricky to measure what I see scientifically, but I am sure that science will eventually get there. I always like to say that the earth always revolved around the sun, but it just took new tools, a new understanding and a shift of perspective to then figure it out. So, we just need to be patient and work hard to get to the point where science will catch up with the knowledge that people in the dance, wellness and health field already have.

Tell us more about “Popping for Parkinson’s”: how is the project evolving and expanding over time?

Popping for Parkinson’s started in July 2015 as a self-funded class and as an experiment. Today, we are offering five-weekly classes both in the UK and in Italy, all free of charge for participants because we do not want to make profit out of disability. I travel all over the world, from New York, to Berlin, to Rome and to other places to give workshops to both people with Parkinson’s and to experts in the field, like dance teachers, scientists, physiotherapists, or general practitioners. There is a real interest in this alternative therapeutic intervention. The project itself won several awards and we got funding from the mayor of London, Sadiq Khan through the Culture Seeds program and from the National Lottery Community Fund. Personally, thanks to the project, I was chosen to be part of the first Red Bull Academy here in the UK. Companies like Red Bull or Reebok actually sponsored me and/or the project to make it grow because they believe in my mission. The project is also in the Universal Hip Hop Hall of Fame, which is the most prestigious award and achievement within Hip Hop culture. And I find this incredible, because all I did was believing in an idea and wanting to share the passion that I had for Hip Hop with as many people as possible. And thanks to that resilience, which is actually an aspect that you train by dancing, we are now here, transforming hundreds of people with Parkinson’s from patients to students literally every week. At this stage, I am also finishing my Master’s degree in dance psychology, looking at the effects of Popping for Parkinson’s classes on the participants, particularly on quality of life. The results are incredibly promising and hopefully they will be published soon, meaning that we will also have a scientific paper that will prove that this project has an effect on the participants. This is again one step in the direction that I was speaking about before, regarding science and getting the tools and the design for the studies right. At the end of the day, our mission is to transform as many people as possible and to bring out the fire and the passion for life. This is what we are aiming at. This is where we are, and this is where we are going. So many other companies and people have supported my idea, which really helps to keep the momentum going. Additionally, we are always crowdfunding because that is fundamental to keep this project going, to make it sustainable and free of charge for participants. But the great thing is that thanks to this project, everyone wins. I love that. The participants win, because they have benefits, they enjoy it, they come for free and they connect with other people over artistic expression and not over their disease and instability. And I win, because I do what I love. So, we all win, which is the great thing about Hip Hop and projects like this. Of course, it is a matter of investment and believing in an idea, but everyone wins at the end of the day and this is why this project is so powerful to me. I am able to see the benefits almost on a daily basis and it just keeps me going. I am in the fire, and the fire within me never stops.
 

Simone Sistarelli and Parkinson's students
Simone Sistarelli during a class with his students. @PoppingforParkinson’s

To summarize, Simone Sistarelli is driven by his infinite passion for dance and Hip Hop, and he impressively transformed this passion into a sustainable project to help people in need. As a youngster seeing his grandfather who suffered from Parkinson’s disease, Simone realized that Parkinson’s patients are constantly moving, similar to Hip Hop dancers. Hence, after establishing this connection in a “light bulb moment”, he initiated his dance classes for people with Parkinson’s and has not stopped since. His project is showing incredible positive health effects on its participants, by transforming them from patients into Hip Hop students. Currently, science has not caught up with what Simone sees on a daily basis, but he is convinced that the various beneficial effects of “Popping for Parkinson’s” will eventually be scientifically proven. Simone’s motivations and ambitions are outstanding, and the achievements of his project are striking. His story is an important reminder that anything is possible if one believes in his or her dreams. We just have to look outside the box sometimes to find a way to transform our passions into something remarkable.

 

Interview. Anna K. Stelling-Germani and Simone Sistarelli

 

Received: 20.03.20, Ready: 01.04.20, Editors: Hind Hashwah, Alexander F. Brown

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