When Musse Barclay moved from Ethiopia to Clark County in 2008 to live with his adopted family, there were growing pains in his new environment.
Barclay settled in the Hockinson School District with a heavily white student body. In middle school, Barclay started to become more cognizant of those differences, and he struggled with confidence.
But advice from substitute teacher Arlene Rose, or Mrs. Rose as students affectionately call her, helped Barclay see his differences as a point of pride.
“I am the only African American in my household and I go to a school where I was one of three African Americans in the middle school,” Barclay said. “People, including Mrs. Rose, made it very clear that was a beautiful aspect of who I was and that I was no more or less capable than any other kid.”
Rose, 71, remembers Barclay worrying that his hair was weird, she said. She thought the opposite and told him so.
“That is beautiful hair,” Rose recalled saying. “Look at what you can do with it.”
That support still resonates with Barclay, 17, and led to him and friend Hayley Oja, 18, to fundraise for an electric wheelchair that will help Rose maneuver as hereditary spastic paraplegia, a group of hereditary, degenerative neurological disorders, inhibits her ability to walk. HSP, which is rare, is already affecting her ability to substitute and make money, which makes it harder to pay off medical bills.
The Hockinson High School seniors raised more than $6,000 to help purchase an electric wheelchair for the longtime substitute, who has developed a legendary reputation in the area, particularly for a sub. As Barclay says: “She’s just a child who gets to be with us.”
‘Warm and friendly’
Rose is known for her classroom games and occasionally singing in class — which she did the first time Oja had her as a sub in middle school.
“A lot of people when they see a sub, don’t really like it,” Oja said. “But with Mrs. Rose, it gets everyone excited and everyone wants her there. She’ll sing songs. She makes us feel at home. She’ll individually talk to people, who she thinks others look down on. She brings the energy into a classroom and makes it fun.”
Rose, who said she’s “a little different than the average bear,” said she tries to keep her relationship with students “warm and friendly,” and “in a different framework than a regular substitute teacher.”
Rose’s positive personality made it even harder to witness her medical struggles, Barclay and Oja said. As part of their fundraising, they got a crash course in America’s medical system, and experienced its common frustrations and disappointments.
Because Rose’s insurance wouldn’t cover genetic testing and she couldn’t afford it, Rose went for a long time without a diagnosis. Without a diagnosis, Rose couldn’t get proper resources and support. It’s a common problem for people who have rare disorders or diseases.
Rose, who is on Medicare, has been in need of an electric wheelchair for many years, but her insurance won’t fully cover it. Barclay and Oja expressed sadness that two teenagers could help Rose quicker than any insurance or state resources could.
“We’ve learned a lot about how our state takes care of people with disabilities and about how accessible those resources are,” Barclay said. “It was heartbreaking to realize that she’s been doing this dance with her insurance for two years. We raised money to get her a wheelchair, but the way me and Hayley are seeing it is that this insurance she’s been paying into and the state … need to be held responsible for taking care of the people they need to abide by.”
Rose said she doesn’t want to be pitied or considered a “poor, wounded woman,” but the reality is that HSP has altered her life and she needs help to continue working and making money. She said the delays in getting a wheelchair have impacted her psyche.
“I get angry,” Rose said. “I feel like they’re telling me I don’t deserve it, I don’t need it.”
The support from Barclay, Oja and the Hockinson community have been a bright spot in an otherwise trying tale. Rose said she was overwhelmed by the fundraising effort, and initially wanted to decline the money, but was convinced she should accept it and honor her students’ efforts.
“Every time I think about it, I just feel so moved and so tearful,” Rose said. “It feels kind, supportive. I don’t know how to respond.”
For Barclay, her response came years ago when she told him that what made him different made him special. Her response continues now, when she inquires about Barclay’s return trip to Ethiopia next year. She’s told Barclay she can’t wait to hear about how it goes.
“She understood the sixth-grade version of me and the 12th-grade version of me,” Barclay said. “She’s amazing.”