Remarks on Alopecia Areata Awareness Month | Remarks on CROWN Act Passage

WASHINGTON – Congresswoman Ayanna Pressley (MA-07) today delivered remarks on the House floor in which she recognized September as Alopecia Areata Awareness Month, celebrated long time advocates, and discussed her own experience with alopecia.

In a separate floor speech this morning, the Congresswoman celebrated the House passage of H.R. 5309, the Create a Respectful and Open World for Natural Hair (CROWN) Act of 2020, legislation that she co-led with Representatives Barbara Lee (CA-13), Cedric Richmond (LA-02), and Marcia Fudge (OH-11), which would ban discrimination based on hair textures and hairstyles that are commonly associated with a particular race or national origin.

Earlier this year, the House passed an amendment introduced by Congresswoman Pressley to provide $5 million dollars for the National Institutes of Health’s National Institute of Arthritis and Musculoskeletal and Skin Diseases to fund research on the causes, impacts, and possible treatments of Alopecia areata. The Congresswoman is also a co-sponsor of legislation introduced by Congressman Jim McGovern (MA-02), which would allow medical wigs and other head coverings to be covered under the Medicare program.

The full text of her remarks, as delivered, is available below.

Transcript: Rep. Pressley’s Remarks on Alopecia Awareness Month
U.S. House of Representatives
September 22, 2020

I rise today in solidarity with my fellow Americans with Alopecia, in recognition of September as Alopecia Areata Awareness Month.

Today, like nearly 7 million Americans, I live with Alopecia, an auto-immune disease which attacks the hair follicles.

This common condition is highly unpredictable and cyclical. Hair can grow back in or fall out again at any time, and the course is different for each person.

Alopecia areata disproportionately affects children and Black Americans and particularly Black women.

Some people may say that it’s “just hair.” But for me and for many people living with Alopecia, hair is intrinsically linked to our identity and our cultural expression.

We all have our own unique stories with our Alopecia diagnosis. Mine began nearly a year ago, as my braider noticed a small patch of baldness.

Very soon after, I was waking up to sinks full of hair. What started as a few small patches quickly spread.

I remember the moment vividly.

I was alone in my DC apartment, separated from my family, on the same day that would’ve been my mother’s 72nd birthday and on the eve of an impeachment vote.

I was standing in the bathroom, staring at my reflection in the mirror, and for the first time, I was completely bald.

For months, I had dreaded the moment when it would be all gone. But looking at myself in the mirror that night, I felt relief, peace and acceptance. It was a moment of grace. And I thank God for that.

In a matter of weeks, I would lose my eyelashes, eyebrows, and the rest of my hair, and be diagnosed with Alopecia Universalis, one of three forms of alopecia. 

I am still coming to terms with my new alopecia reality, and the impact of my traumatic hair loss.

Every day, thanks to the support of my family, my staff, and the broader alopecia community and others who have experienced hair loss, I am making progress.

I am making progress despite the hateful comments, the cruel and constant online harassment about my baldness, the intrusive and ignorant questions on the elevators, and the unsolicited advice. And stares. Lots of stares.

No doubt about it, a bald woman entering a room, entering the floor of the U.S. House of Representatives, makes people uncomfortable.

Visually, it challenges every antiquated, cultural norm about what is professional, what is pretty, what is feminine. But in the loss, the hurt, and the ache of it all, I’ve never lost sight of the following:

I am Sandy and Martin’s daughter. I am Conan’s wife. I am Cora’s stepmom. And I am the Congresswoman for the Massachusetts 7th Congressional District.

Mister Speaker, I am now bald, but I am in good health and I am in incredible company.

I have received an outpouring of love from people across the globe who are living with Alopecia.

Early on I received a note from an elementary school aged girl with Alopecia. She wanted to give me some tips in navigating this new normal. She told me about the first time she walked into school after her diagnosis. “Just walk right up to your friends and tell them, I’m still me,” she wrote.

Who couldn’t use a reminder like that as they navigate the world? Those little acts of kindness and solidarity have defined this experience too.

I’m proud to be in good company of those fighting for people living with Alopecia.

There is an entire community that has been working tirelessly to share their stories and educate the public on the impact of Alopecia areata.

For three decades, the National Alopecia Areata Foundation has been working to garner Congressional support for research and treatment development.

My longtime friend and partner in good, Congressman McGovern, introduced legislation to allow medical wigs to be covered under the Medicare program, so that every senior living with Alopecia can afford wigs and other head coverings.

This year, the House passed my Amendment to provide an additional five million dollars’ worth in next year’s funding for the National Institutes of Health, which will fund research to increase our understanding of the causes, impacts, and possible treatments of Alopecia areata.

I know that our Work is far from over, and I will continue to fight.

I will take my seat at the table, I will take up space, and I will create it too. And with this space, we will make change.

Every single person deserves to show up in the world, exactly as they are, without fear or discrimination.

To my fellow Alopecians, wherever you may be. Today, I bring our stories to the floor of the People’s House.

To say that we belong. Our stories deserve to be heard. And we are absolutely beautiful and worthy.

Thank you. I yield.

Transcript: Rep. Pressley’s Remarks on House Passage of the CROWN Act
U.S. House of Representatives
September 22, 2020

I rise in strong support of the CROWN Act, which will move us one step closer to ending the centuries of discrimination against Black hair. Discrimination which has rejected the dignity and beauty of my people.

From personnel handbooks to school dress code policies, afros, locs, and twists have been codified as proxies for our Black skin and manifestations of anti-Black racism.

Many, especially Black women, grow up hearing that our natural coils and kinks are distracting, ghetto, ugly, and unprofessional. From as early as grade school, Black girls are pushed out of school for wearing their hair naturally, and as we grow up, we are taught to straighten our hair if we want to get a job or simply to live our lives in peace.

When I first joined Congress, I proudly chose to wear my hair in Senegalese twists because I sought to intentionally create space for all of us to show up in the world as our authentic selves.

Today, I navigate the world a little differently.

My beautiful twists were taken from me due to the auto-immune disease known as Alopecia Universalis, but today, I stand in honor of those who don crowns of all types. May they continue to shine.

Thank you, I yield.

 

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