Nemeh Al-Sarraj: Disability Justice Advocate
Nemeh Al-Sarraj doesn’t shy away from sharing her story. She’s a dedicated advocate for disability justice whose mind never strays far from the issue closest to her heart — autism awareness. She’s candid about her diagnosis, conversational about her journey.
But the sincerity that Nemeh practices was once secrecy and shame.
“For a while, we decided to hide my diagnosis. We actually did not want to share with anyone that I had a disability,” she says.
Although two of her brothers had been diagnosed with autism years before, their mother was shaken when a specialist informed the family that Nemeh is also on the spectrum.
The first words out of Nemeh’s mother’s mouth were: “But she’s a girl.”
She was well-versed in her sons’ conditions and characteristics. Even so, as Nemeh explains, her mother grew up “in the America that said that autism is a male disorder.”
“The attention that autism received in popular media as well as in medical research fixated on boys. Stories of girls on the spectrum were left unspoken, and women with disabilities continue to confront a double stigma — even in their own families.”
But for Nemeh, her diagnosis came with a sigh of relief: “It was like, oh, finally. Everything makes sense.”
Growing up and going to school, Nemeh had struggled socially. “I had gained a bad reputation — not because I was a poor student, but because I was a difficult person to understand,” she remembers. And she did not easily understand others, often misreading signals and behaving incongruently.
“I wanted friends, but I couldn’t really relate to any of my peers,” says Nemeh. “I knew that there was something different about me.” And she wanted to find out what.
In pursuit of an explanation, her mother brought Nemeh from specialist to specialist. It took nearly two decades and one exceptionally thorough assessment before they were told that autism was the answer.
“It was a 24-hour process of interviews and questionnaires,” remembers Nemeh. “They got information from all my doctors and all my teachers.”
Those who receive less comprehensive, more superficial assessments may remain undiagnosed. In addition, Nemeh explains, “people only know what autism looks like in its classic form, in its severe form.” Even doctors overlook cases without apparent intellectual disability, and many reach adulthood before learning that they are on the spectrum.
It was this misinformation and misunderstanding that pushed Nemeh to pursue a bachelor’s degree in disability studies and promote autism awareness. She always cited her brother as her motivation and her inspiration.
“I want my brother to have a better childhood than I had. I want him to have the best life, “ Nemeh says. She works full-time caring for him, acting as his Personal Care Assistant (PCA) in addition to providing around-the-clock support as his sister.
But there was more — “the work that I was doing was also about me,” says Nemeh. “After doing years of presentations and events, I was like, people have to know that I have a disability too.”
Nemeh had been introducing her audiences to different types of autism, demystifying the diagnosis and denying the standard stereotypes that surround it.
She saw, though, that there was a gap still to be filled — the same gap that elicited her mother's surprise about Nemeh's diagnosis. “What was missing was the stories of people with disabilities, especially women and especially women with autism,” Nemeh explains. “You always hear what a specialist says, what a doctor says, what a teacher says.”
Nemeh decided that she would challenge these narratives and start changing attitudes about disability. And that she would do so by sharing her story.
“I can’t imagine all the people who go through what I went through — who were told that they were stupid, that they wouldn’t make it. Even though I make sure to say that each person is different, people need to hear the stories of someone who actually lives with a disability.”
It wasn’t easy. “When you’re bullied in school, when your teachers don’t understand you, when your doctors think that your symptoms are in your head, you become afraid. I was afraid that if I told people that I have a diagnosis, they would laugh at me and make fun of me,” Nemeh says.
Now Nemeh presents to professionals who interact frequently with people with disabilities in their work, such as social workers, psychologists, and teachers. She has presented at numerous conferences, including those by Education Minnesota and the Minnesota Social Services Association. She’s a winner of the Changing Attitudes award given by the Arc Minnesota.
“We’ve been taught that disability is inability and that there is nothing beyond a diagnosis.”
Nemeh also takes time to share her story with parents, who have been steeped in the same misconceptions that her own mother once held.
In fact, Nemeh’s mother is a shining example of how such beliefs can evolve. In seeing and supporting her daughter’s activism, her understanding of autism has expanded.
Nemeh believes that the work of changing attitudes begins within the family.
“When you want to make a statewide or a nationwide change, you have to start small,” says Nemeh. “That’s what I'm hoping — that in my future, beyond my future, things will get bigger and better.”
She has big dreams for her community — a wheelchair-accessible park and an elevator in every building. Representation of Muslim women in fields such as psychology and social work. Theology classes that are accessible for those with disabilities.
After all, Nemeh explains, “To neglect people with disabilities contradicts the whole message of the Prophet Mohammed, peace be upon him. We have a lot of stories from our history about how it’s okay to have a disability and how we’re supposed to love those with disabilities.”
“I’m proud that I am part of a religion that tells our community that you have to accomodate people with disabilities,” she says.