My Disability Activism Models My Pride in Who I Am

The following is adapted from Helena Donato-Sapp’s speech at NEA’s 2023 Representative Assembly, in July.

Helena Donato-Sapp is only 14 years old, but she has a strength of character and a sense of identity and purpose that many never achieve in a lifetime. She is a Black girl from Long Beach, Calif., who was born with medical issues that led to lifelong learning disabilities.

“These disabilities are only one part of my many identities,” said Helena, who has published articles in peer-reviewed journals, spoken to national audiences, and received national and global honors for her activism in Black girlhood, disability justice, and abolitionist education.

“I am Black. I am dark-skinned Black. I am a Black girl. I am adopted. I have gay fathers. We are a multiracial family,” she said. “One of my dads is an immigrant. The other dad was raised in poverty. I am not just one thing. I am many things, and these multiple intersectional identities shape my world.” 

Helena explained that her identities give her power and that they also “rain down bias and discrimination on me.”  

Unfulfilled IEPs 

When Helena’s learning disabilities were identified, she felt as though the school held them against her. She has ADHD, a visual processing disorder, a working memory disorder (an inability to hold and use information over short periods of time), and dyscalculia (a learning disorder that affects a person’s ability to understand number-based information). Like many schools, she said, hers does not have enough teachers and resources, and it’s hard to have an Individualized Education Program (IEP) implemented.  

It was especially hard early on as she and her fathers were figuring out the tenacity required for disability advocacy. 

“My teacher had too many students and didn’t have the needed resources to provide me with the supports I needed for my multiple disabilities,” she said. Helena has studied her disabilities extensively with her parents and understands them well. She also understands her IEP, and has ever since she was in third grade. 

Every year, she and her dads make a one-page, accommodations sheet on card stock for each of her teachers, telling them exactly what Helena’s strengths and needs are and how the teachers can help support her.  

“It’s all in my IEP. I know the Education Department code, I know the district policies, I know the school’s intentions, I know the federal laws. And as clear as we are, my unique, individual needs are still not fully met.” 

Helena knows that like her, many kids across the nation are not being served in accordance with the law. She also knows why.  

“Educators need more time, resources, and supports,” she said. “And that takes funding, not just the promise of funding, but collaboration time, training, and reasonable workloads.”

‘I Lift My Head Up High’ 

As if it weren’t enough for a teenager to have to fight for her education, Helena faces bullying, isolation, and exclusion, too.

She led a schoolwide anti-bullying campaign, which she said didn’t go over well with her peers.  

“But I am the kid who will not be put down or held down. I am the kid who will just show you what! You want students like me in your classroom,” said Helena, who finished middle school with three years of straight A’s.  

But the exclusion never stopped.  

“I left middle school last year with no good friendships that I will long for. The strange thing is that I think my peers wanted me to feel shame, but I am already clear at 14 that my work is about refusing shame for any of my identities,” she said.  

“I have a strong armor of self-worth. And my disability activism is modeling that pride to all other students and all educators. I lift my head up high with pride in who I am.”  

Helena has faced discrimination against her Blackness, against her disabilities, against her girlhood, and against her gay family, but she realizes how lucky she is to have two parents who lift her up.  

“Not every kid is as lucky as I am. And so I beg [educators] to look for the lonely child sitting by themselves at school, the child that no one picks for play or group work, the child that never chatters excitedly about a sleepover,” she said. “Look for me in your school and in your classroom—and be my champion. I am a prime example of a child that can soar and succeed if you champion me.”  

Words Matter 

“Being a champion, to me, means confronting your own deficit ideology and seeing my assets. It means to lift up the underdogs. It means caring for the down-trodden. It means championing my work and my character,” Helena continued. “It means learning more about how to support the students with disabilities in your classroom.” 

As part of her advocacy, she reminds educators that it takes just one caring adult to transform a child’s life, and she asked them to be that adult and that champion.  

One of Helena’s champions was her fourth-grade teacher, Mrs. Takii.  

“She was the first teacher who loved me and my learning disabilities. And she stayed up at night thinking of ways to support me and make me successful,” she said. “One thing she did for me was to be sensitive to the way she talked about my learning disabilities.”  

Before Mrs. Takii, teachers made Helena feel like she had a problem body and mind. Their  message? She was lacking, and she was a deficit. 

“But not in Mrs. Takii’s room,” Helena recalled.  “She smiled and simply said that I learned differently. It was the first time that anyone in school was careful and sensitive about the language they used to define me, and I am here to tell you it made all the difference.”  

“Language matters,” she added. “Words matter. How we talk about disabilities

matters deeply.” 

Not only is Helena an activist for disability awareness, but for all public school students and educators. She encouraged them to keep saying the word gay, keep teaching the truth of history, keep teaching person-to-person and heart-to-heart.