URLEND project takes on taboo topics among refugees in Salt Lake City

March 17, 2017 by JoLynne Lyon

photo of refugees

Some of the refugees the researchers encountered experienced traumatic things, opening up new questions about mental health. “Particularly those coming from war zones, they perceived their mental health as disabling,” said one of the researchers. (This stock photo was taken in Copenhagen.)

If you’re gathering information, fostering leadership and spreading awareness about a taboo topic across cultures, there is one thing you don’t want to do: Sound like the all-knowing, arrogant American.

Dr. Eduardo Ortiz, a researcher from the Center for Persons with Disabilities, was sure of that before he even began a project that ultimately shared awareness about disability among refugees in Salt Lake City. So he and other project leaders began their work by carefully choosing the research fellows who would work directly with refugee communities.  ­They found two multi-lingual, educated women who were not born in the United States.

“By being a native Lebanese-American citizen who attended a French school and then married a Peruvian Latin-American citizen, I turned out to be a good link who can build bridges,” Mireille Karam quipped during a presentation at the Associated University Centers on Disability conference in Washington, DC. She reported on the experience last December, and she was one of the fellows who worked among six refugee communities in Salt Lake City.

photo of a multicultural group of presenters

URLEND research fellow Mireille Karam (in the center, wearing a blue scarf) presented some of the URLEND group’s findings during the AUCD conference in December 2016. She is pictured with other fellows from all over the United States. Photo courtesy of AUCD.

Still, she said, the project had some barriers to overcome in any language. “Disability is a very difficult subject to deal with,” she said. “Lack of education, different cultures and backgrounds didn’t make this work easy. It made some of these communities like shatterproof shells. We worked hard to learn about their particularities, needs and challenges.”

In addition to the CPD, the project brought in University Neighborhood Partners at the University of Utah, and the Utah Regional Leadership Education in Neurodevelopmental Disabilities, which builds leadership across health care disciplines in five states.

Team members worked together to foster leadership, but most of all, they focused on bringing out information from people within the communities themselves. They conducted six focus groups among the 50,000 refugees who have settled in Utah.

Rather than hire interpreters in academia, they found interpreters from among the refugees and trained them in research protocol. The result: better access to the people they were trying to reach. “We wanted to prepare the connection with them, that they could trust us,” said Helene Kalala, a research fellow from the Republic of the Congo who worked on the project.

While it was time-consuming, the approach helped to overcome barriers to language and build relationships within the targeted communities. And together, the research team discovered that cultural attitudes vary with regard to disability—so much that the whole concept could be tricky to define across cultural lines, and especially if the disability was not an obvious physical impairment, like autism. Those differences may help explain why the prevalence of autism spectrum disorder is more than 600 percent higher in white American communities than in other racial or ethnic groups.

photo of Helene

Helene Kalala, URLEND research fellow

“Some of them will define disability based upon religion, based upon culture,” Kalala said. “For them, disability is like, this person has a disability because it is a curse from God. … They thought they would stay home and do some ritual and go to church. Then it would go away. They don’t really believe it is a disability and it can be cured or, for instance, to look for services.”

Being a refugee—or even belonging to a minority—can be isolating. Being a refugee with a disability intensifies that isolation,  said Dr. Teresa Molina, the University Neighborhood Partners’ Associate Director and a co-investigator on the project. “It prevents them from being more able to look for resources and to integrate their own people with disabilities.”

Some families were reluctant to admit that disability even existed within their members. “Some women will notice disabilities with their children, and they will stay silent,” Kalala said. “They don’t want to talk about it because they believe their husband would like a wife that does not give birth to a child with a disability.”

“I think the stigma comes from the lack of information,” Molina said. “I think that a strength that many of these communities have is that yes, they deny it socially, they don’t integrate disabled people, but they do take care of them. At home it becomes a given, this is what he can do, this is what she is able to do, and she is welcome at home.”

The researchers also found that some cultural practices might also affect disability within families. “It’s very common that people in some communities marry cousins,” Ortiz said. “There are some issues related with disabilities in the children of these marriages.”

Some of the refugees they met had also experienced terrible things, opening up new questions about mental health across cultural lines.  “Some of them come from a war place, and they have family members who are struggling with that,” Helene said.

What’s more, trauma made the mental health effects worse for some, said Molina. “Particularly those coming from war zones, they perceived their mental health as disabling. … Not knowing where to go, not knowing what to ask, not even knowing how to prepare meals in this environment. It’s not that there was a long history of malnutrition or things that they felt they couldn’t perform in their previous environment, but in this environment they were caught by surprise by their own reactions.”

Ortiz also wondered if, in places where trauma is commonplace, it is just more socially acceptable to talk about disturbing things. One thing he was certain of: while this particular project is over, the conversation about disability among refugee cultures needs to continue. He is working to start a new project that will help the effort become more self-sustaining.

After gathering information, the group assembled and distributed information that was tailored for each community. For those cultures where marriage between cousins is common, they offered information on how some disabilities are inherited, and how to access services. “We created information that says, you have resources you can use,” Ortiz said. “We can’t tell them, ‘You must do this,’ but we can tell them, ‘Here, we do this.’ … At the end they were thankful for the information that we were sharing.”

 

photo of Eduardo

Dr. Eduardo Ortiz, pictured at a relaxed moment at the AUCD conference. Photo courtesy of AUCD.

Molina agreed. “More is needed, because communities need to know about resources, particularly,” she said. What’s more, when the project was done, people from communities that had not been included in the study came to her, asking if similar information could be presented to them.

The team also spoke to groups about the development of a typical child. “When we talk about the earlier signs of, for instance, autism, we also talk about the development of a child, from birth to when they go to school,” Kalala said. “They understood, and with that we can tell them about the earlier signs of autism. It was something new to them.”

Along the way, Ortiz said the group learned from the people they set out to serve. “This relationship is both ways,” he said. “They are learning, we are learning. … Their way of life is different. It creates more questions to follow up and understand.”

For example, the concept of marriage and family changes across cultural lines. For some cultures, a marriage is a union between families, not just between two individuals. Changing the place of residence may affect how the refugees view family, and it may not. But Ortiz said our service systems needs to be able to see families from different points of view so that they can be more effective.

Molina was impressed by family loyalty to their own members who had a disability. “There were not any mention of institutionalization,” she said. And caregivers worried about what would happen to their loved ones if they were no longer able to provide care.

Ortiz came away convinced that first-generation immigrants are an underused resource, both inside and outside the disability world. He remembers a young woman in one of the focus groups with obvious leadership potential. “Her expectations were very high, but they were shaped by her experience,” he said. “We need to go beyond the accent, beyond the dress, to the strengths, that for whatever reason, we have the chance to use.”

CPD recognizes service of 15 employees

March 15, 2017 by JoLynne Lyon

photo of Mark

Mark Innocenti is among this year’s 15 milestone honorees. Congratulations to all!

The CPD recognizes its dedicated employees who observed milestones in their work with us this year. They will be honored at the 24th annual employee recognition luncheon at Utah State University.

Congratulations, everyone! A list of those celebrating milestones with us is below.

Charlee Nealy        10 years

Janel Preston         10 years

Jodie Anderson      10 years

Kim Stewart          15 years

Michael Jeppson    15 years

Amy Notwell         15 years

Sachin Pavithran   15 years

Jared Smith          15 years

JC Vazquez           15 years

Emma Speth        20 years

Connie Panter      25 years

Linda Alsop          25 years

Amy Henningsen 25 years

Julie Wilson         25 years

Mark Innocenti   30 years

For IDASL student, learning about disability is a life-changing adventure

March 10, 2017 by JoLynne Lyon

photo of a person in a sled.

One IDASL students’ experience took her dog sledding with people with disabilities in the Tetons. Photo courtesy of Common Ground Outdoor Adventures, which provides many opportunities for people with disabilities. Common Ground partners with the IDASL program.

Sherena Huntsman became a student of the IDASL class on a recommendation from her doctoral committee chair. “My dissertation is an investigation of marginalized identities in digital spaces, and that overlapped with disability studies,” she said. And that’s how her graduate work in English brought her to the Interdisciplinary Disability and Service Learning class at the Center for Persons with Disabilities (SPED 6500).

She is working on a PhD in Technical Communication and Rhetoric out of the English department at Utah State University—and her specialty is examining how to reach people who have trouble accessing information in the digital age. She is also a graduate instructor and assistant director of composition with the department.

“The point is that technical writers are advocates for users, so they need to understand the experience for the user,” she said. She has used the IDASL class as a way to delve into the experience of people with disabilities. (IDASL is a two-semester, one- to three-credit course available to juniors, seniors and graduate students of all disciplines. Its purpose is to help people from all academic fields work together to find solutions to disability-related issues.)

sled dogs pull the sled

Photo courtesy of Sherena Huntsman.

For Huntsman, it has been something of an adventure, but with lessons attached. “I go bowling with them and dog sled with them,” she said. She played football with someone who uses a wheelchair.

“I think that the way this impacts my teaching is understanding the student body in diverse ways, instead of putting it in a box and saying, ‘this is what a student is and does,’” she said.

Huntsman lights up when she talks about it. She teaches in USU’s English department, and the things she learned with IDASL are already influencing her way of teaching and thinking about her students. She pays attention to details like posting alternative text with her pictures online, and she captions her videos. She thinks all the time about how different bodies process information.

But along with the fun came some apprehensive moments. When Huntsman came into the Developmental Skills Laboratory, she truly felt intimidated. “I was nervous, the first time I walked in, not knowing how to engage with people who didn’t communicate the way I did,” she said.

Most of the clients at the day program for adults with developmental disabilities were nonverbal, while Sherena is a writer who tends to speak in fully-formed, grammatically-correct sentences. But she soon understood that plenty of communication was happening around her. “I just had to learn a different language,” she said. If a participant screamed or got upset or touched her, she looked for the meaning in the action. She would ask if they wanted to get up or look at a different book.

She remembers putting together a puzzle with a woman who would stop moving every time she picked up the wrong piece. That was the woman’s way of telling her she was doing it wrong, she said.

In addition to spending time at DSL, she put in service learning hours with the Options for Independence independent living center and Common Ground Outdoor Adventures in Logan, as well as the PEERTop Sports Activities and programs at the CPD. Her participation with IDASL put her in contact with people of all ages and a wide variety of disabilities. “My service learning hours have been really educational,” she said. “They’ve had far more impact than anything you can discover in a textbook.”

She has a daughter on the autism spectrum, so she had some experience with disability, but as she puts it, “Disability is wide. I’d seen one tiny picture of it. … I did not realize how many assumptions that I had built up about disability identity, and how many different definitions of disability have been incorporated into the way I act and think.”

But when she thinks back on the things she has done, the overall message for her is not about the differences in disability. “There’s far more same-ness between my experience as a person and other people’s. There’s less difference than I anticipated.”

To find our more, or access an application for the IDASL class, visit their website or contact Alma Burgess.

The CPD’s consumer advisory council celebrates successes, seeks new members

February 23, 2017 by JoLynne Lyon

photo of a man and a boy on a hike

Consumer Advisory Cuncil member Mary Kava has advocated for people with disabilities in her community including her grandson JJ, pictured here with his dad, Jason.

Updated 4/10/2016: The Center for Persons with Disabilities’ Consumer Advisory Council is one of the primary guiding bodies of the CPD. Made up of self-advocates, agency representatives and family members of people with disabilities, it sets goals and monitors the progress toward them.

Now, the CAC has two openings for family members and one for a self-advocate. Current members have this message for anyone who wants to join: It’s worth the time.

“It’s been phenomenal,” said Mary Kava, a board member and Castle Dale resident. “I started off with a boy on the autism spectrum. Knew nothing about it.” But through the connections she made with the CPD, she was able to network with parents and professionals who could help not only her family, but others in the region. “When you’re dealing with someone with a disability, and all the pressures with that, it’s been great to have resources and people you can talk to,” she said.

For example, when a woman in Kava’s community discovered her adult son on the autism spectrum needed sudden surgery on his mouth, Kava was able to step in and help. Insurance wouldn’t cover the procedure because the man had already maxed out his dental coverage for that year. Kava put a message out through the CPD’s networks that the family needed help, and connected with a doctor in St. George who was willing to do the surgery free of charge. Then, after speaking to other officials in Utah, they found a way to have insurance cover the hospital costs that had previously been denied.

When another young man—Kava’s grandson—was isolated on a school bus because the driver feared autism was contagious, Kava was again able to connect professionals with the school district. With her help, they ensured the boy was not isolated and that district employees understood more about autism spectrum disorder—which is not communicable.

“It makes you feel good, being part of something that is helping people,” Kava said. Her membership includes two meetings a year, but if she can’t make the trip she can attend by phone.

Kelly Holt is a self-advocate who is also the committee chair. “I feel like people that have a disability, and also parents and agency members, should try to come out more in the community and get involved,” she said. “They can learn by speaking up for themselves. Sometimes they don’t know what to say.”

For Kava, the connection to the CPD is all the more valuable in rural Utah. “We don’t have all the services that they do in Salt Lake or Ogden or even Logan … so that’s one thing I like about the board, is that it’s statewide,” she said. She applauds the CPD’s efforts to reach out to rural Utah in its recent five-year plan.

CPD Consumer Liaison Gordon Richins encourages other potential board members from rural Utah to apply. To receive an application, contact him either by mail or email.

For more information on the CAC and what it does, visit their page on the CPD website.

METAS group teaches independence, takes an international view

February 20, 2017 by JoLynne Lyon

Sachin plays ball with a young student

The CPD’s Sachin Pavithran plays ball with a young student.

The idea for METAS started in 2015 with some conversations—the kind that could only happen between blind self-advocates from diverse backgrounds.

“We’d been talking about services in the U.S. and how people here have opportunities to be more independent. We started getting into conversations about how those services are not available to kids who are undocumented, or in other countries,” said Sachin Pavithran.

Pavithran directs the Utah Assistive Technology Program at the Center for Persons with Disabilities. He is blind, he was born in India and grew up in Dubai before coming to the US to pursue a higher education. And, after taking part in those conversations with like-minded people, he added another title to his resume in 2016: Treasurer for METAS (Mentoring, Engaging and Teaching All Students). The group’s other three members all have strong backgrounds in advocacy and education.

Together they developed a curriculum, and then they started taking it abroad. Their focus was on fellow educators and professionals, giving them a chance to see their students do more things independently. “Their philosophy is more about taking care of the kids…  Everything is done for them,” he said. “Ours is getting them to do it on their own.”

Last May, they visited a group in Guatamala. None of the children they encountered there had a cane, so METAS introduced canes and worked with students on mobility. They also focus on independent living, sports like goal ball and beep baseball, and self-advocacy. “There’s not a lot you can do in a week, but we planted a seed of what is possible,” Pavithran said. “A lot of it is confidence building and helping them think there is a future for them.”

METAS also makes an effort to meet with policymakers wherever they go. It’s important to see what is working in each local area, Pavithran said. “They have things figured out that work for them in their environment.”

The group has received requests to visit groups in Bolivia and some African countries. They have also made connections with companies and individuals who can help with funding. Materials have been donated from different sources.

For more information, visit the METAS homepage.

Young students try using canes in Guatemala.

METAS works introduces skills for independence, including orientation and mobility.