By Nemeh Al-Sarraj, Engage Minnesota
For six years, Nemeh Al-Sarraj struggled with university. “I was at North Hennepin,” in Minneapolis, Minnesota, she said. “And I kept changing my major every week. I picked almost every major possible.”
“My family was so annoyed.”
School was always a struggle for Al-Sarraj, who wasn’t properly diagnosed with Autism Spectrum Disorder (ASD) until she was nineteen. After that, she said, life began to grow a lot clearer, but she still had a lot to learn about herself and others. She also had to learn to come to grips with her diagnosis, and to “stop hiding the fact that I have a disability.”
There was a long struggle, and then “I took a year off. I transferred to Metro State and looked at all the degrees.”
It was at Metro State, Al-Sarraj said, when education finally clicked. “I took my first disability-awareness class. And loved it.”
Last fall, Al-Sarraj triumphed in her long struggle, graduating with a Bachelor’s of Human Science degree in Disability Studies. But even before she graduated, Al-Sarraj’s life had markedly changed. She had seen how much a diagnosis changed her life, and how she’d struggled before she’d gotten it. As a Palestinian-American, a Muslim, and a person with cognitive differences, she knew how much work there was to do in disability awareness. She wanted to contribute.
Al-Sarraj didn’t want to wait until she had her degree. Clearly, once she has a clear idea of what she wants, Al-Sarraj sets about getting it done. She has difficulties with communication, reading body language, and social situations. But, through this, her single-minded determination shines.
Cognitive disabilities and Minnesota’s Muslim communities
While still studying toward her degree, Al-Sarraj was intent on helping others. She started out by giving two presentations at North Hennepin, the first community college she attended. That felt right, and she moved from there into organizing an autism-awareness fair for the local Muslim community. Al-Sarraj was particularly keen that Minnesota’s Muslim communities find the disability resources that they need.
Al-Sarraj is matter-of-fact as she says that it took doctors nineteen years to become aware of her situation. “Even the doctors didn’t know what to look for,” she said, “or what to ask. I suffered a lot as a child because of being undiagnosed.”
In fact, she said, “I was lucky to get diagnosed at the age of 19. Some people are in there 40s, 50s, or 60s before they get a diagnosis.” The diagnosis is important, she said, so people can get the help they need.
“For me, it helped me understand myself better. It helped me understand why I had experienced a lot of things I’d experienced. Why can’t I give eye contact? Why do I have sensory issues?”
“The diagnosis helps you see what you need to do to become more independent in your life.”
She is focused on helping others find their way, as much as she can, and in removing the stigma around cognitive differences. She has held resources fairs, potlucks, and a Minions fun day event held during Ramadan. A lot of kids with cognitive differences don’t really enjoy the holidays, Al-Sarraj said, “no matter what their faith is, they don’t really enjoy the holidays.”
She put together the Minions Fun Day event in a local library, envisioning it as a safe space for kids with cognitive disabilities. “They can have fun, we can manage the sensory level, and they can enjoy their time and be with other kids and have fun. It’s almost like a holiday gathering for them.”
Five kids who have autism showed up with their families, she said. “The other kids happened to be kids who come to the library, and they played together with the kids who had autism. It was a positive way of showing them that these kids might be different, but they can still play with you.”
“That was my happiest event.”
Bringing her message to the public
In addition to these events, Al-Sarraj decided that she needed to help educate others about how to deal with people who had “invisible” disabilities. At first, she thought of speaking to educators, health professionals, and police officers. All these professionals can have a big impact on the lives of people with cognitive disabilities, and all are under-trained.
Al-Sarraj had herself spent a lot of time dealing with educators and health professionals who didn’t understand her. And she saw the serious—sometimes deadly—consequences when a police officer isn’t sure how to deal with cognitive differences. It’s critically important for officers to know how to interact with different kinds of people, she said. This is particularly true of people with disabilities that make it harder for them to process information, or with the deaf community.
“A lack of disability training in helping fields can negatively effect those with disabilities.” she said.
She particularly thought about parents, who worry, “Is my child going to be misunderstood the next time they’re in a situation?” And the people with cognitive differences themselves: They sometimes need to be able to communicate with police, particularly when they have been the victims of crime.
But getting into talk to officers hasn’t been easy, Al-Sarraj said.
Some of the larger departments, like Minneapolis and St. Paul, do have basic training about cognitive differences. For smaller departments, she said, money is an issue. Many nonprofits do trainings, she said, but they charge. Grants are available, but it takes time to apply. And police departments haven’t generally wanted to deal with independent speakers like Al-Sarraj.
The same was true of the health-care and educational professionals that she wanted to talk to: “I can’t get to the people who are already in the field.”
Unless you’re an expert, she said, no one wants to take you seriously. “But they’re not going to know first-hand what it’s like to live with something.”
Still, Al-Sarraj didn’t give up. Instead, she changed tactics. If she couldn’t get to people in the field, perhaps she could get to them before that. She decided that “the best shot is to get to the colleges. Sometimes the youth are more open.”
Catalog by catalog
Al-Sarraj doesn’t have a professional network of university contacts, and she isn’t a speaker affiliated with an official institution. In fact, she was still a college student herself when she began her work.
To get into classrooms, she methodically searches through course catalogs of all the different Twin Cities-area colleges and universities that she can get to by bus, looking for courses that might be a match for what she wants to say. Then she contacts the instructors.
“I have sent over 300 emails in the last two years.”
For the fall 2016 semester, Al-Sarraj said, she already has about thirty presentations lined up in college classrooms around the Minneapolis and St. Paul area. These talks are at a wide variety of institutions in different sorts of classrooms.
Al-Sarraj said that, when she arrives in a classroom, many students are surprised by her. They expect someone on the autism spectrum to be male. “Most people think it’s just a male thing. They see a female come in, who happens to be Muslim.”
They’re often stunned, she said.
It can be hard for Al-Sarraj to interact one-on-one. But presentations are different, she said.
One presentation she gave at North Hennepin Community College was about her experience living with an ASD. “Even though I only had 20 minutes, I had several students contact me afterwards, asking if they could ask me questions by email.”
How does she know if it’s been a successful presentation?
“First off, I don’t have students just staring at me like zombies. They ask questions. Then the teachers let me know afterwards what they thought of it. If I get positive feedback from the instructor, then I did what I came out to do.”
Al-Sarraj currently does all her speaking engagements on a volunteer basis, but hopes to continue to this in the future. It’s odd, she says, “because you don’t usually imagine people with an ASD being public speakers.”
She often talks about her journey of getting diagnosed and how it was for her as a child, as well as symptoms and traits of other cognitive disabilities, the challenges faced. Her openness surely helps in these talks.
“Life-skills wise, I am still very behind,” Al-Sarraj said. “I’m almost ten years behind with my developmental skills. It’s still a challenge, because I don’t always know what I’m supposed to say or how I’m supposed to act around other people. People don’t understand that I don’t understand them. I can’t read body language, and that is a big problem.”
But, one classroom at a time, Al-Sarraj is bringing this life experience to young people. She’s also showing them, in a very visceral way, that people with disabilities have value.
“I want people to know that you can have a diagnosis and still have something that you can bring to the world,” Al-Sarraj said. Sometimes people believe that people with cognitive disabilities are “nothing,” she said, or that “they don’t have any value that they add to society.”
“They can bring value to the world that they live in, and they can help the society economically as well. Yes, people with disabilities to have value.”
Instructors, health providers, police, and others don’t have to wait until Al-Sarraj crosses their path. She urges everyone to take a moment to educate yourself.
“I know that money is always an issue,” Al-Sarraj acknowledged, “but there are a lot of free trainings online from different nonprofits.” Or, she said, if you have the time and ability to participate in a live training, go! “There’s so much out there that you can learn.”
Beyond trainings, Al-Sarraj suggested, you can put yourself in situations where you encounter people with a disability. Abstract knowledge only takes us so far. Ultimately, she said, it’s hard to get to know people “unless you’re actually interacting and trying to understand them from their perspective.”
Talking to parents
Talking to parents about cognitive disabilities is hard, Al-Sarraj said, because we’ve been told that a child who has cognitive differences is “less” than others. Parents often ask “What did I do?”
But if there are signs, Al-Sarraj said, then parents need to take them seriously. “There’s hope if there’s early intervention,” and for children, she adds, “there are not a lot of services available.” On the other hands, there are fewer programs focused on helping adults learn to function at a higher level. “We don’t do much for adults.”
So if for any reason you think your child is not typical, Al-Sarraj said, you should see a specialist about it. “Do it. Don’t be afraid. Your child is still going to be your child.”
Making a change
Throughout all her organizing ups and downs—trying to reach Muslim families, police departments, educators, health professionals, students, and others—Al-Sarraj has not allowed herself to be daunted by the difficulties.
“It’s not always easy to change people’s opinions,” she admits. “It’s a start, and I’m making some improvement with the youth and college-aged students. I’m not going to stop trying, because it’s not going to happen overnight. It takes sometimes years and decades.”
Al-Sarraj’s work has been noticed: She’s already been presented a Changemaker award by The Arc Greater Twin Cities, an organization that aims to “promote and protect the human rights of people with cognitive disabilities.”
Or, as Al-Sarraj says, people with unique abilities.
“There has to be a change of words,” she said. “The words that are currently used are hurtful. When we say ‘special needs,’ we look at people as if they’re children. Disability is negative. I know some people whose self-esteem was lowered because of that word.”
“Unique abilities to me is the best one, since they have unique gifts and strengths.”
It took Al-Sarraj ten years to finish her Bachelor’s degree. “People never thought I was going to finish anything.”
But now she’s an activist and volunteer, an accomplished public speaker, and is considering a Master’s in Disability Studies. She’s open about her diagnosis, straightforward, and determined. If anything is evidence for Al-Sarraj’s preference for the term “unique abilities,” it’s her own path.
Nemeh Al-Sarraj is a graduate of Metropolitan State University. She completed an undergraduate degree in Bachelors of Human Services in Disability Studies. As someone who has lived with many different disabilities throughout her life, Nemeh has both academic and personal knowledge and understanding of what it means to have a disability and has spent the past nine years raising awareness about different disabilities like autism, throughout the community. A strong champion of rights for Muslims with disabilities, her goals include educating the community about different disability topics and issues and helping Muslims with disabilities in the community feel welcomed and included. In 2014, The Arc Greater Twin Cities has honored Nemeh Sarraj of Spring Lake Park with its “Changing Attitudes” Changemaker Award.
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