Advocacy and inspiration from the words of Frank Stephens

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We were so grateful to have Frank Stephens join our Leadership Summit as a guest speaker. Frank is an actor, a writer, and a self-advocate. His presentation inspired and motivated our PALS leaders to continue demonstrating acceptance and inclusion. We’re excited to share Frank’s powerful message in his own words with the rest of the PALS community:

Thank you, Jenni, and thank you President Obama Together, they make a great team, don’t they? Besides, I always enjoy hearing anyone talk about my favorite subject … me.

I am thrilled to be speaking to a group of people that is ready to look beyond themselves and consider what “inclusion” can mean to people who are regularly excluded from society.

As a member of the Board of Directors of Special Olympics Virginia, I have made it a point to listen to my fellow athletes, to know what matters most to them. I am certain that what matters most to us is being included in everything.

Often, people think that inclusion is something that happens, or more likely, does not happen in schools.

The truth is, real inclusion is something that happens in communities, and even more importantly, in people’s hearts.  

You might be asking yourself, “What makes this little fellow an expert on inclusion?” Well, part of the answer is I am one of a group of people who are blessed to be 2.1 percent greater in every cell of our bodies than you mere common people.

Don’t worry, I am very accepting, very inclusive. I won’t think less of you just because I have more chromosomes than you do.

Seriously, I am here to talk to you about how a little bit of inclusion in society can change lives and expectations.

I’m here to ask you to think about how many lives are being wasted because we have prejudices that arise from race, religion, nationality, and disability.  We have so much to give one another if we stop building walls to separate and start reaching out to include.

What makes me the expert? Nothing really, except I have lived an unexpected life. That extra chromosome I mentioned made lots of people think that my life would not amount to much.

Maybe some of you think that a life with Down syndrome is not likely to amount to very much. It is a very common belief. Let me share a little about myself with you and give you something to think about.

What I really want to talk about tonight are differences. I’m going to talk about differences so tiny that they fit inside a human cell. I’m going to talk about other differences that are so large they span a generation.

Just remember as I’m talking, that none of these differences is too small to matter or too large to be spanned by the hearts and dedication of people like you.

I will start with the set of differences that have led me to be a Special Olympics athlete and Global Messenger.

When my body was first forming, when the first two cells divided, each of them had one extra tiny, tiny piece of material called a chromosome.

People like me tend to be a little shorter because our arms and legs are shorter than most people’s. Our faces are usually a little bit flatter than most people’s because our cheekbones and noses don’t stick out from our faces as much.

All of that adds up to a person who is a little bit uncommon … in my case, uncommonly handsome.

What I want to talk about, tonight, is another kind of difference – the difference that people like you and organizations like Special Olympics, Best Buddies, and PALS have already made in the lives of people like me. I also want to talk about how much more we can do together.

Sometimes, I think our prejudices and fears make us forget how far we have already come.

So, I want to tell the story of what a difference a single generation has made. If I had been born when my Dad was born, things would have been very different. Here’s what it would have been like if I had been born in 1950.

I would have been sent to live in an institution. I would not have gone to school. I would not have learned to read or write.

I would have had little or no contact with common society. If I did have contact with common people just like you, we would both have been afraid of each other.

I would have received little or no health care. I probably would not have lived much past 20 to 25 years. Most of all, my life would have had little to inspire hopes and dreams.

None of that is exaggeration. That is what life looked like for someone with intellectual disabilities in the 1950s in America. It is what it still looks like in parts of the world.

Then along came Special Olympics in 1968 and everything began to change.

Most of all a miracle happened – we, people like you and I, learned not to be afraid of each other. Nothing has been the same since.

Okay, here comes the part where I tell you about my life and what a wonderful ride it is. If it sounds like I’m bragging … it’s because I am. But I don’t know how else to show you what’s possible now.  

Okay, here goes. This is my life. I was born in a log cabin deep in the Ozark Mountains. Well, really I was born in a hospital in Fayetteville, Arkansas, but that log cabin thing sounds so presidential, don’t you think?

Seriously, so how has my life been different because of people who believed I should be included? Well, here goes:

I lived with my family. I went to school with everyone else. I learned to read and write.

I competed in sports wearing my school colors. Because of a single teacher who was ahead of his time, I was included in drama classes with the common kids. I acted in school plays. Several times, when there was no part that suited me, my friends wrote a part for me.  

That inclusion, that sense that I belonged with everyone else made all the difference in my life.

I learned to communicate my thoughts and dreams. I learned to fight for the right to be treated like everyone else.

I became a spokesman for others with intellectual disabilities. I have spoken to crowds as large as 10,000 people. I have appeared on television and radio many, many times.

After political commentator Ann Coulter publicly referred to President Obama as a “retard,” I engaged in an internet debate with her that lasted for over two weeks and went “viral.” 3.2 million people followed me on the internet.

My story of those events appears in a book called Stand Up that won two book awards and became a best seller on Amazon.

At this moment, I need take a second to tell you a little story about assumptions and preconceptions.

When I was in middle school, I wanted to be included in a creative writing class, but the teachers didn’t think I could do that kind of work. In the years since I have worked hard, on my own and with my family, to learn to express my thoughts.

In the years since then I have been published several times in the New York Times, The Washington Post, The London Daily Mail and my pieces have been reprinted around the world.

I am especially proud that my writing is being used as part of a curriculum to teach creative writing in schools all over the country.

My point is a simple one: low expectations can be a bigger obstacle to success than disabilities. Every situation is different, but please just listen when your friends with intellectual disabilities express an interest in taking a risk.

Okay, back to my life story.

In 2012 the Canadian Broadcasting Company chose me, along with Malala Yousafzai, as one of the World’s Most Extraordinary Ordinary People. I have always thought that the best part is they started with the premise that I am ordinary.

I have been to the East Room of the White House, twice … and I didn’t have to jump the fence either time.

I was one of a dozen people honored at a White House Dinner. The President quoted me in his speech that night. Katy Perry was six feet away from me as she sang, “Baby, you are a firework.” She was sooooooo hot.

A couple of years ago, I auditioned for and won a lead role in a movie about bullying, forgiveness, and acceptance. That movie is called Touched by Grace.

Because of the movie, I got to walk the Red Carpet at the Emmy Awards show in Hollywood. The ladies were sooooooo hot.

By the way, I have never been as happy as I was the summer we shot the movie. It was incredibly hard work. A day of shooting usually lasted about 16 hours. It was hot. It was exhausting. It was repetitive. It was wonderful!!! Oh, yeah, and the actresses were soooooo hot.

Because of the movie, I signed a deal with one of Hollywood’s top Talent Agencies to pursue my acting career.

Last year, I was on a family vacation in California and my agent called to tell me I had a chance at a guest role on the Emmy-winning show, Born This Way.

Do I look happy up there?

I regularly speak to Congressional briefings on medical research and intellectual disability. Two years ago, when I was in Europe on vacation, I was asked to help lobby the British Parliament.

In October of last year, I was asked by the Global Down Syndrome Foundation to testify at a Senate Appropriations Committee about funding research into issues related to Down syndrome.

Some of you may have seen it. No one can ever predict what will catch the fancy of the internet. The video of my testimony did. It has been translated into dozens of languages and spread across the net. At last count, it has been seen by over 160 million people worldwide.

The most important lesson for me from that experience is that you never know when something you do will have an impact on the world. So, approach every opportunity as a chance to change the world for the better.  

Seriously, so what is the point of all my bragging? I want to make the simple point that a life with Down syndrome can be as full and exciting as any other.

Look, I know my life is not typical or average. In fact, it has been magical, but it is also real. And it is not unique. I am not the only person with Down syndrome that has benefitted from a society that is willing to give us a chance.

There are so many others: like international model Madeline Stuart; musicians like Emmanuel Bishop; actors like Lauren Potter, Jamie Brewer, and the whole cast of Born This Way; and, entrepreneurs like restaurant owner Tim Harris, cookie queen Collette Divito, zoomba teacher Yulissa Arescurenaga, and fashion designer Ashley Deramus.

Those are good lives by anyone’s standards. We should not have to justify to anyone the extra-chromosome that makes us who we are.

But I must sound a note of caution that we still have a long way to go. We have promises to keep and miles to go before we sleep.

You still hear people who call one another “retard” as an insult.

There are people, like Nobel Prize winner Richard Dawkins, who think that people like me should be terminated before we are ever born, because he believes we bring more suffering than happiness into the world.

Do I look like I’m suffering?

There is another argument for terminating Down syndrome pregnancies. It is the “burden on society” argument.

Recently, an official of the Dutch Health Ministry defended the policy of encouraging the termination of Down syndrome pregnancies. He pointed out that, on average, an individual with Down syndrome cost the Dutch people 48 thousand Euros per year.

Wow, that sounds like a real burden, doesn’t it?  But, how much of a burden is it really?  

Because Down syndrome is rare, there are about one thousand, four hundred common people for every one of us with Down syndrome. That means, the financial burden we place on the rest of society is the cost of one cup of coffee per month.

Can you spare one cup of coffee a month, so that I can have a life?

Even if you don’t care about my life, surely you care about your own. It turns out that people like me are a medical gift to society. Our extra chromosome causes us to be virtually immune to soft-tissue cancer, but much more likely to get Alzheimers Disease.  

That means the key to curing those diseases is somewhere on that extra chromosome. Studying our extra chromosomes will lead to those cures.

If I can be a writer, become a professional actor, and make millions of people think, imagine what this generation and the next will do. We must be brave enough as a society to let go of old prejudice. We must be brave enough to include.

Well, My Dad told me to always remember what an old country lawyer once told him about speaking to a group. “The mind can absorb only as much as the seat can endure.” Those chairs look pretty hard, so I think I should wrap up.

Let me say one last thing, real inclusion is not just about letting people with differences sit in the same classroom, or church pew. Real inclusion is reaching out to make everyone a part of the same experience. It’s letting everyone contribute what they can and learn to contribute more and more.

So, reach out. Bring new people into your life. Who knows, one day they might just introduce you to a President … or maybe even, Katy Perry.

Thank you.

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