This past Saturday, I had the honor of giving the Huntington Study Group 2014 keynote in Minneapolis, Minnesota. I thought it would be cool to share the speech and slides with you all. Let me know what you think.
View slides here.
My name is Kristen Powers. I am the executive producer of Twitch, a story about my genetic testing for Huntington’s disease. Now, I haven’t had a midlife crisis, grown any white hairs, or had to deal with an obnoxious teenage child yet (unless we want to count a younger brother), so I’m going to talk about what I know. It’s actually a time period everyone in this room is familiar with: childhood.
When I was young, I had an obscenely keen sense of what is right and wrong. Sometimes, that made my life a little harder, especially when the other elementary school kids thought I was being lame when I didn’t join in on teasing peers or harassing the teacher. Unfortunately, it also made me far too aware of how unjust Huntington’s disease is.
My mum was diagnosed when I was nine years old, but she had been symptomatic for many years previous to 2003. I was not made aware of this disease until I was eleven years old. Around that time, I also learned about my genetic fate with this disease. And it sucked. It sucked knowing that my mum would never attend my elementary, middle, high school or college graduation. It sucked knowing that she would never meet my future husband. It sucked that I had to spend the next six years living with this question mark hanging over my head. It all sucked. My childhood was scary, hard, and at often times, felt nonexistence, especially the days I spent caring for my three-month-old brother while trying to keep an eye on my mother, all at the age of 11. Adults have always called me an old soul, which I found to be somewhat alarming. To be an old soul, to me, meant I had missed out on the years I was supposed to transform into an annoying, dorky teenager from a cute, dumb kid. All the older people around me compounded the issue by saying that childhood was the best time of their life. You’re telling me it all goes down hill from here. That’s enough to induce a panic attack in a kid who keeps on hoping her childhood will eventually begin.
Fortunately, I was able to block out those who chose to turn a blind eye to the beauty and hope surrounding them. Believe me, it wasn’t easy. Some adults were like a pack of wolves. I’d say that I didn’t enjoy my childhood and teachers to parents of friends would instantly attack with “These are the best days of your life” “don’t be so ungrateful.” It’s easy to use the term childish for moments like these, when a human seems incapable of rational thinking or appreciation for what’s in front of them. In our society, we often connote it with being unreasonable, insensible, and selfish. Honestly, I’m not really sure why or when we made that association. Last time I checked, it was the adults starting wars, breaking apart families and signing Babe Ruth to the Yankees. Sure, every age demographic has its pros and cons, but I’m sure adults wouldn’t like it if we associated greed, pessimism, and unhappiness with the term “adultish.” We don’t lecture you about the planet you trashed, the wars you started, the politicians you elected into office…okay, maybe we do complain a lot about the chores you make us do, but remember that our generation is nowhere near as critical of your generation as you are of ours. Maybe there’s a lot more wisdom in childhood than we give it credit for. It’s easy to let the adults of this world jade you into thinking it never gets better from there. But maybe we shouldn’t listen to those adults. Maybe we should listen to the kids instead.
You’ve probably heard of the Millennial Generation. In fact, you might hate them. If you have a teenager, they often look like this (hold phone in front of face). IN FACT, our society is so tapped into technology, Google made a device that literally obscures your vision so that you can now access the Facebook secretly while your mom lectures you about the laundry. We’re also great at eye rolling too, especially me. I believe no other parent is as happy as mine are to have a documented eye roll on camera in my film in response to one of their jokes.
But I’m here as a voice for the Millennial Generation and I want you to know what we’re truly capable of. I’m not 100% sure, but I think I may be the youngest keynote speaker at HSG. As a result of minimal representation of my age group at these types of events, I thought I might speak out for them today. Because while you might view us like this, I view the power of my generation more like this.
If there’s ever an example of what kids can achieve on the path to happiness despite the most adverse of challenges, it’s the kids of the Huntington’s disease community. I hope you all have token note of the members of the NYA, YPAHD and HYDO, to name just a few organizations empowering kids to take back their lives from Huntington’s disease. Most of these kids haven’t even finished high school yet and they’re already giving presentations on what HD is and how individuals of all walks of life can help those affected, which includes lobbying Congress. For those of you who think we all waste our time on Facebook, many of those affected are using it as a means of communicating with others who understand our struggles, especially when we live in a remote region or don’t have access to a car that would allow us these in-person interactions. In fact, Millenials are pretty bad-ass at finding ways to affect change before they can even vote. Volunteering rates for our age demographic are the highest in its documented history, which you know means that my generation has found a way to get involved, despite what the naysayers want you to believe. How do a bunch of obnoxious, childish teenagers do it? let me lay it out to you by sharing a personal anecdote.
When I was first learning how to cope with Huntington’s disease, I was so frustrated that everything and everyone around me was sad or stressed. The adults had a lot on their plate and it was showing. My dad, Mr. Mom, my all-time hero, noticed the sour mood this often put me in. He was always quick to tell me, “Choose your attitude, Kristen.” While this particular saying of his was never appreciated when I was being a grump, it stuck.
Sometime when I was 12 or 13 maybe, I created the InnerKid philosophy. This harkens back to my earlier statement about the beauty of childhood. Kids are awesome at having fun and being happy. Yes, they have obnoxious temper tantrums and cry at every little booboo, but have you noticed how quick they are to recover? Kids don’t avoid their emotions. They embrace them, acknowledge them, and get over them. And pretty quickly at that. So the idea of the InnerKid was to hone this beautiful ability to find happiness in the simplest of moments. I was determined to be happy and find bits of meaning, despite the circumstances.
The InnerKid had a second part to it as well. Adults are REALLY good at telling children that they can’t do something. Don’t touch this, don’t climb on that, oh my god will you please stop putting makeup on the dog. And while they love to complain about the lack of engagement in teenagers today, maybe it’s because the adults are causing the apathy. When I was starting my environmental initiatives, even my documentary later on, I constantly faced ageism. People would not take my ideas seriously nor did they encourage me. Many said my projects were a waste of my time, including Twitch. Today, my documentary is touring in over 15 cities and three different continents as of now so I’ll let you decide if they were right about that. Perhaps it was just a little bit of reverse psychology, but these naysayers gave me a challenge and I was determined to show them just how wrong they were.
It is extremely hard to make a documentary. Most professional films come in around $100,000 in cost. Very few to none of those filmmakers are under 20. Most hospitals cringe at the idea of an outside camera crew recording their operations. The documentary was likely not to ever be made because of the challenges it presented.
So I did a little reflection. Instead of saying, “I can’t”, I broke up the process into pieces and figured out what I could do. I could talk to filmmakers and get their professional advice. I could start a fundraising page. I could make video diaries of my personal experience. Yes, things like raising $10,000 initially seemed crazy and maybe something I could not do. But then I threw some naivety into the mix and equally crazy optimism and said “Let’s at least try it.”
It was a great hurdle for me to overcome these naysayers. Imagine how hard it must be for a kid who doesn’t grow up with a support system like mine. With adults constantly telling us what we cannot do, rather than providing constructive feedback and advice with the cautious optimism of success, it’s no wonder that we retreat back to the safety of our online worlds and friend circles. We fail to find the support we need because we’re stereotyped before our work and potential can even begin to show itself.
Activism is a huge part of my life. When I was creating the InnerKid philosophy, I told myself that I wasn’t going to take “no” for an answer when it came to fulfilling my wildest hopes and dreams. Being a minor with no money, no car, and no title or letters surrounding my name did not discourage me. My dad made sure I kept up this mentality. When I was in 5th grade, I HATED my new school. I would complain non-stop. One day, he told me that I needed to write a letter to my principal with all the suggested changes I would make to the school. I’m not sure if he thought I’d actually deliver it, but one month later I was the student body president of a brand new student council. My dad has always encouraged me to turn complaints into action.
If you still think Millennials are lazy, you haven’t met the teens from HD families who are stepping up into so many roles. Children and teenagers often become caregivers and yet don’t receive the same support as adults do when it comes to coping with this new responsibility. Sometimes, they don’t even recognize their newfound role, yet they take on the same responsibility. In addition to the caregiver role for their affected parent or siblings, many of us additionally take on the role of field representatives, lobbyists, or organizers of film screenings and fundraiser walks. Young people in HD families are different. If you think we are lazy or unwilling to step up to the plate, you haven’t opened your eyes to the power of youth in this community.
Youth: the optimistic realists. The generation that is trying to show the others that they are capable and worth something, but won’t stop if they are brushed away. Stop lecturing us and instead, find ways to help us, to empower our crazy, impossible, maybe even stupid goals and dreams. I’ve heard so many parents shut down their own children at my own screenings. They look at me and think “wow, my kid would never do that.” Yes, not many of us are making films, but it’s crucial to meet your kid where they are at. One parent was talking about how if her kid came up to her and said he wanted to make a film, she’d just laugh. And that’s exactly the problem. Don’t laugh at us, don’t discourage us. Find a way to turn that idea into a YouTube testimonial or maybe a three minute clip in partnership with a local HD group. Find ways to help us out before you shut us out.
We’re all here trying to do that to cure Huntington’s disease. For many, that goal feels unattainable, but that doesn’t mean we’re not trying. Think of teenagers and young people in the same light. We are trying our best to figure out the world we were given and shape it into something meaningful and beautiful. In the words of the great Kendrick Lamar, adults do not kill our vibe. Instead, amplify it. Help us via mentorship, sponsorship, product venues for conversation, direct financial and academic support to the HD youth. Please, serve as a conduit and assistant as we function in this adult world before we are meant too. You don’t have to take the driver’s seat, but please, at least let me borrow your car so that I can drive change all over my community.
Instead of complaining, we’re doing something about the crazy, mad world we inherited. And we hope that you’ll join in and help us too.