Safia’s Journey: Understanding and Fighting for Disability Rights

This story was co-written by pediatric brain tumor survivor Safia, whose resilience and insight offer a powerful perspective on her journey.

When Safia was diagnosed with Neurofibromatosis Type 2 (NF2) at 12 years old, she had no idea how much her life would change. Now a college sophomore majoring in English and minoring in the Classics at the University of Illinois—Urbana-Champaign, she has undergone multiple major surgeries to remove the benign tumors caused by her condition. Six years ago, the tumors’ growth on the auditory nerves of her brain, and their subsequent removal, left her deaf.

“Knowing nothing about American Sign Language (ASL) or the rights I am entitled to within educational settings, I thought my life was over,” Safia shares.

As she began to navigate the world without her hearing, she learned a crucial lesson: understanding and advocating for your rights as a disabled person is essential.

Disability is Not One-Size-Fits-All

“Something everyone should know is that the label ‘disability’ isn’t a one-size-fits-all,” Safia explains. “When I tell people I’m deaf, they assume I know ASL, but I’m not fluent; I’m still learning,” she adds. Despite such obstacles, she remains focused on the future.

“I’m doing my best to move forward with my life despite all I’ve endured, but this doesn’t make me ‘strong’ or ‘brave’ like I’ve often been told. There’s no part of me that’s different from anyone else when it comes to handling trauma and pain,” she says.

Safia believes resilience is a universal experience. ”When the time comes, we are all forced to lock in and do our best with regard to getting better and moving forward. Everybody’s health journey is unique, but how you choose to grow from your experiences depends on your perspective.”

For Safia, this journey has meant not only adapting to her new reality but also recognizing the importance of self-advocacy and standing up for her rights.

The Impact on Families

A serious diagnosis doesn’t just affect the individual—it affects the entire family.

“The six years I’ve lived with my condition has deeply impacted my family,” Safia shares. “When one person in a family faces illness, everyone feels its effects. My parents did their best to support me, but my siblings often felt overlooked because so much of my parents’ attention was on my health. During that time, my mental health declined as well, and that also affected everyone.”

She continues, “I believe one of the greatest challenges families face when their child is diagnosed with a brain tumor is coming to terms with the reality of the diagnosis. Unfortunately, my parents had no one they could to turn to for guidance or support as they struggled to understand my illness. Everyone in my family was grieving—not only the loss of my hearing but also the overall decline in my health. To me, the hardest part is not just accepting the diagnosis but also coping with the changes and losses that come with it.”

She hopes that by sharing her story, people will learn to approach those experiencing health conditions and disabilities—and their families—with more compassion and empathy.

Fighting for Disability Rights in Education

Despite the challenges, Safia found purpose in advocating for disability rights, particularly in education.

“I’ve unfortunately experienced discrimination in educational settings, but a positive outcome of battling these injustices is that it shaped me into the person I am today,” Safia explains. “My commitment to standing up for myself helped me discover my passion for advocacy and protecting the educational rights of people with disabilities. Years from now, I hope to be a lawyer who fights for these rights on behalf of others with disabilities.”

Many disabled students struggle to access the accommodations they are legally entitled to. Understanding their rights under laws like the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act is crucial to ensuring they receive fair treatment in school and beyond.

Seeking Support and Community

One of the biggest challenges for families facing a brain tumor diagnosis—or any disability or illness—is finding the right support.

“The Pediatric Brain Tumor Foundation (PBTF) offers so many resources for connecting with other brain tumor families and for getting support services,” says Safia. “I think the best time to engage with an organization like PBTF is when you first receive a brain tumor diagnosis, but you also shouldn’t be deterred from engaging later. I learned about PBTF well after my diagnosis, but I’ve since caught up on all the incredible services they offer. It’s better to engage late than not at all!”

Finding a support network can make a significant difference, whether through organizations like PBTF, advocacy groups, or disability communities.

A Passion for Writing and Advocacy

In addition to her advocacy work, Safia has found another powerful outlet: writing. “I love to read and write!” she says. “I’ve been published in a variety of acclaimed publications, including The Wall Street Journal and Islamic Horizons.”

These experiences have deepened her passion for storytelling, providing her with an additional platform to raise awareness about disability rights, health challenges, and the importance of self-advocacy.

A Vision for the Future

“To me, a world without childhood brain tumors would be one with more opportunity. I envision a world where children don’t have to grow up so fast and experience pain, and where parents can watch their children grow and live happily.”

For now, Safia is focused on her short-term goals: graduating from college and regaining strength following a recent spinal surgery. But her long-term vision is clear—she wants to use her experiences to help others.

“I recognize that I wouldn’t be alive today if it weren’t for my incredible neurosurgeon and all of the life-saving surgeries he has performed on me. I’ve been given multiple second chances, and I want to use my life to do good.”

Safia’s story is a powerful reminder that knowledge is power. Learning about your rights, advocating for yourself, and seeking support are all critical steps toward a more inclusive world for everyone with disabilities.