Justice Center Honors ME/CFS Advocate Amy Carlson

On Thursday, actress and ME/CFS activist Amy Carlson was honored at the Muhammad Ali Humanitarian Awards for her long history of activism.

This annual fundraising gala honors people who are making significant contributions toward securing peace, social justice, human rights, and/or social capital in their communities and on a global basis. Other honorees included Dave Eggers, Pearse Lyons, and Sister Larraine Lauter.

Carlson was presented with the Muhammad Ali Humanitarian Award for Gender Equality, and devoted a significant portion of her speech to the memory of her late friend and ME/CFS patient, Anne Berry.

Carlson addressed the lack of research and understanding for ME/CFS and pledged her commitment to raise awareness and funding for the disease.
Below is a transcript of Carlson’s speech:

Thanks so much. I’d like to express my profound gratitude to the Muhammad Ali Center for this award, and to congratulate my fellow nominees – I’m amazed at all they’ve accomplished. And I’m humbled to be here before this lovely audience – including my 11-year-old daughter, Lyla, who is here with me tonight.

Accepting an award for work in Gender Equality is a true honor. In my lifetime, I’ve watched this human issue grow significantly in importance. Note that I say “human issue”; gender equality isn’t just a woman’s issue; if you look at the statistics, you’ll see that everyone benefits when women are equal.

The writer Chimamanda Ngozi Adichie has said, “The whole goal of feminism is to become redundant. My dream is for a world where I won’t have to call myself a feminist because there will be gender justice. And to get there, it has to be a mass movement.”

Lately I’ve watched the awareness of sexism increase in strength – not only in the national discourse, but also in the growth of the MeToo and TimesUp movements, as well as through changes to our collective awareness that are as simple as the way we use language.

The pain and real-life repercussions of sexism are finally being addressed, as we make great strides in the long, long march toward equality. We aren’t nearly done; but I promise you, Lyla, that WE intend to be the cleanup crew, because YOU deserve to grow up in a world that values women and people of all genders equally.

I come from a family that is proudly and profoundly American. My parents, (who are also here tonight), were the first in their families to earn a four-year degree. As they advanced in life, they honored the values their parents had instilled in them. As a young girl, I remember my dad quoting Muhammad Ali: “Service to others is the rent you pay for your room here on Earth.”

In our home, if something needed to be done and your hands were empty, that job fell to you. That attitude has kept me involved in my neighborhood, AND in my larger world community. My philosophy has always been simple: If not me, then who?

On a side note, I’ve always been fascinated by the bystander effect, which is based on the idea that the more people who are present during a time of need, the longer it takes for that need to be met, because people wait for someone else to act first. BUT If you’re conscious of the bystander effect, you can avoid it – by following your humanistic impulses; and acting. With so much at stake in today’s world, we must all resolve to give up our status as bystanders and support our fellow humans.

If not me, then who? This question has carried me many places. It led me to work in Rwanda on a humanitarian mission after the 1994 genocide. It has taken me to ‘women’s builds’ organized by Habitat for Humanity. And, in many ways, it’s the reason I find myself here tonight.

The fight for gender equality affects every dimension of our society and culture. Look at Serena Williams’ experiences during the US Open. When women get angry, we’re dismissed as “hysterical”; when men do, they are “outspoken.”

That struggle has life-and-death implications when it comes to public health. Tonight, I’m honored to have the opportunity to shine a light on a highly misunderstood disease – Myalgic Encephalomyelitis, which is also known by the trivializing subtitle, Chronic Fatigue Syndrome. ME is a debilitating neuro-immune disease recognized by the World Health Organization since 1969. From the neurological to the cardiovascular, ME affects nearly every system in the body. Exertion makes symptoms worse, and can result in a nearly paralytic crash of body functions. ME sufferers feel as if they’ve been poisoned. A quality of life study in Denmark found that among people living with a range of diseases – from lung cancer and multiple sclerosis to stroke and heart failure – those with ME scored lowest in terms of quality of life. In case you’re wondering how ME relates to  gender equality, 80% of those who suffer its effects are women.

Last year, ME took one of my best friends from childhood, Anne Berry. In fact, it took Anne from me long before it ended her life. In the years before she died, Anne’s quality of life was so compromised by ME that she was unable to work, travel, or experience the simple pleasures we had shared. Anne was a great lover of life, travel, spontaneous dance and full of joy. ME took all that from her.

Because I have a vendetta against ME, I’ve vowed — alongside another beloved childhood friend, Connie Bane, (who is here tonight with Anne’s sisters Ellen and Jill) — to raise awareness and funding for ME, which currently affects an estimated 2.5 million Americans. In Illinois, my home state, it is estimated there are more than 100,000 cases of ME – and not one doctor who knows how to treat it effectively. And despite millions who suffer with no end in sight, federal spending on research is actually expected to DECREASE this year.  Dollar per dollar, it is funded at the level of hay fever. Compared with other debilitating diseases, like MS, which receives 400 dollars per patient annually in research and funding, ME patients receive between 3 and 5 dollars.

Needless to say, there’s a tremendous amount of work to be done, but after Anne died, Connie and I looked at each other and said “If not us, then who?” We launched our action and awareness campaign with a screening of the film Unrest – an incredible documentary by Jen Brea – followed by a trip with Anne’s sister Ellen to lobby in Washington with the group Solve ME/CFS Initiative.

The low awareness around ME illustrates how issues of gender equality affect women’s lives on so many different levels, including our health. This is particularly true among African-American women and other women of color, whose health issues have been marginalized for far too long.

But there’s also some good news to report. There are two pieces of legislation pending in the Senate that specifically focus on issues around women’s health.  Can you guess the gender of the people who introduced these bills? That’s right – the MOMs Act is sponsored by Senator Kirsten Gillibrand of New York, and the Maternal Care Act is sponsored by Senator Kamala Harris of California.

So you see Lyla, women are working in many different capacities as leaders, volunteers, artists, and philanthropists to change the world you’re inheriting for the better.

Because if not now, then when?

And if not me, then who?

Like the great Muhammad Ali, I believe that work and service to others is not only the rent for our rooms here on earth – it is also the food that sustains and enriches our souls.

On behalf of Connie, (Ellen and Jill), and Lyla – and in memory of Anne – thank you again for this amazing award.

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