Introduction

Denise Plante (Host): Now I want to introduce our Impact Award recipient, Jennifer Brea. She has been selected to be the 2019 recipient of the first-ever Media Impact Award. Now, let me tell you a little bit about Jennifer. She’s been chosen based upon her incredible passion and determination to tell her personal story of her illness and to bring visibility to the millions of people living with ME—myalgic encephalomyelitis and chronic fatigue syndrome—around the world. Imagine living with that every single day.

As the director and producer of the international award-winning documentary film Unrest, and through co-founding the global grassroots network organization #MEAction, IDA applauds her continued strength and vision. Jennifer Brea was unable to be here tonight because of complications to her illness, but we’re going to check out the trailer and see a little bit more about Jennifer Brea.

Documentary Trailer Excerpt — Unrest

From as early as I can remember, I wanted to swallow the world whole. Anything is possible. I just thought I would have more time… Sometimes I wouldn’t be able to speak. If you say too little, they can’t help you. And if you say too much, they think you’re a mental patient. The doctor would tell me, ‘You’re just dehydrated. Everyone gets stressed.’

When medicine has no answers for you, where do you turn? … I started filming more and more people all over the world, from my bed. We’re organizing a day of protest … That life was gone, but here I have this new one. And I’ll take all you throw at me, and I have to fight for it.

Jennifer Brea’s Acceptance Speech

Hello, everyone. I’m so sorry that I can’t be there to meet with you in person. My last surgery is taking a little more time to fully recover from than I thought, and sometimes the body doesn’t want to cooperate. But I’m sure you know better than anyone exactly how that goes.

I just want to thank the Invisible Disabilities Association for this Media Impact Award. I’m so honored to accept an award from an organization that is doing so much great work for people who are often disbelieved and face stigma, misunderstanding, and prejudice because their disability, pain, or illness is invisible.

The Hidden World of Invisible Disabilities

This is one of the primary reasons I made my documentary Unrest, because I know all too well the harm of being disbelieved and ignored. Unrest is about the hidden worlds of people living with myalgic encephalomyelitis, or ME. It is a devastating chronic multi-system disease that affects at least 1 million Americans and up to 15 to 30 million people around the world.

Twenty-five percent of people with ME are homebound or bed-bound, and so we’re invisible in two ways. If we’re well enough to go out to see our doctor or spend time with family and friends, oftentimes people don’t even know that we’re sick. But after we go out, we crash and often disappear for days, even weeks, trying to recover from that effort. And then there are others of us who are so ill that we have to live in dark bedrooms, bedridden and extremely sensitive to light, sound, or touch. This is a population of the very severely ill that the public—and even most doctors—never get to see.

Building a Global Movement

I am proud to say that over the last two years, thousands of people around the world have used Unrest as a tool to reach their families, inspire elected officials to take action, and educate doctors. That film and campaign have actually grown into an international movement.

I launched a non-profit, #MEAction, which is building a global movement to fight for recognition and research so that one day, all people with ME will have access to compassionate, effective care. Our activists are working on local, national, and international levels to fight for change. There are even some ME Action Colorado organizers and volunteers in the audience tonight—if you want to learn more about ME or how to get involved, please definitely go and say hello to them.

The Power of Allyship and Shared Struggle

This is a fight that I know we cannot win without allies. Allyship begins at events like this one that bring people from different communities together so that we can learn about the challenges we face, what we share in common, and how we can meet them and fight for change together.

So to Wayne, Jess, and everyone at Invisible Disabilities, your work is so important, and I thank you so much for this award and for your warm embrace of #MEAction, Unrest, and the fight for health equality for all people living with ME. We know that we will only create the change we wish to see in understanding, accessibility, medical care, and research if we build allies in other disease and disability communities—if we fight alongside, with, and for each other. I hope that fight can begin, grow, and move forward into the future tonight. Thank you so much.