Friday, April 30, 2021

“All of us are people all of the time”: An Autistic Self-Advocate’s Perspective

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“All of us are people all of the time”: An Autistic Self-Advocate’s Perspective

Screenshot from YouTube video of Noor Pervez

Autism Awareness and Acceptance Month offers an opportunity to recognize the diversity of experiences within the autistic community. To that end, ACL is sharing the perspective of Noor Pervez, a self-advocate who has channeled his own experiences into a career in advocacy for autistic people. Pervez currently serves as the Community Engagement Coordinator at the Autistic Self Advocacy Network.

Noor Pervez considers himself to have been “very blessed” throughout his life. Although he has faced a number of challenges as a trans, Muslim, person of color who has multiple disabilities and who grew up in a family with low income, he benefited from programs that were available to him because he lived in an affluent area, had teachers who were invested in his success, and had people in the community who helped him at pivotal moments in his life. Together, those factors gave him the opportunity to pursue his goals.

He notes, however, that the opportunities he has had have largely been due to chance, and they would not necessarily have been available to someone else in similar circumstances. For example, though he was accepted to several colleges, barriers related to transportation almost prevented him from continuing his education. Ultimately, he went to college because an autistic trans person who happened to live on his block offered to drive him to and from classes every day.

"If they hadn't done that - if someone in my community hadn't been willing to give me those resources - then the rest of my life just doesn't happen," Pervez says. "A whole lot of me becoming who I am, and having the chances that I do, boil down to a series of moments just like that."

"At so many points in that journey, that opportunity relied on me having had an opportunity before," he adds. "So it's just all these links in a chain, and if one of them snaps, people who are multiply marginalized can just fall through the cracks and you have to spend a lot of time working your way back up."

(Video: Pervez discusses how chance, opportunity, and identity shaped his journey)

Pervez says the programs and resources that made those links in the chain possible for him can be harder for multiply marginalized people with disabilities to access, for a variety of reasons.

For example, finding peer mentors can be more difficult, because they may not see many people like themselves in disability community groups or at conferences. That is not because people of color do not experience disabilities, he said. Rather, a variety of structural factors lead to differences in who gets diagnosed, who knows about the groups and events, and who has access to the money, transportation, or time needed to participate in them.

While noting that different communities can have different experiences, Pervez shares that people marginalized by race or other factors may not feel like they are treated fairly in disability community groups. In addition, he notes that many marginalized people and their families fear that any association with disability will be a "secondary burden," and that identifying as a person with a disability can be "something else that people can hurl and use against you."

As an advocate, Pervez says he is most proud when his work causes someone to take a fresh look at the way things are and to begin to ask “why.” He hopes that this willingness to question why, for example, black and nonspeaking people are less visible in the autistic community can be a starting point that leads to greater change.

“That root, that start, is something I’m really excited about and proud of,” he added.

Pervez has some simple advice for people who want to learn more about the autistic community and the needs of autistic people: "listen to autistic people … and when I say listen to autistic people, I mean all autistic people."

(Video: Pervez’s advice for people who want to learn more about the autistic community.)

Pervez shares a similar message with people within the autistic community, urging them to remember that "there is no autistic person who you are better than or worse than on the basis of their autism." He encourages people who are new to the autistic community to learn about autistic and neurodiversity history, in part to appreciate that the “people who have fought for our rights haven't been the most 'convenient' people."

(Video: Pervez’s message for the autistic community.)

"All of us are people all of the time, with complete and full humanity," Pervez concludes. "That includes nonspeaking people, that includes people who have difficulty getting across what they want, that includes people who don't have access to lots of supports but who need them or want them, and that definitely includes trans autistic people, people of color who are autistic, people who are struggling … it includes all of us."

Bonus Video: Pervez shares what he would like to see ACL do to support the autistic community.

Editor’s note: Pervez’s responses reflect his own experiences and thoughts.

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