Embedded Files
In this series, a mother of a child with special needs describes how she became a cultural broker to support other families.
Part 1: A Mother’s Resilience: Building a Bridge Between Cultures and Systems
Part 1: A Mother’s Resilience: Building a Bridge Between Cultures and Systems
“You should stop speaking Vietnamese to your daughter,” the school professional told me. “It will just confuse her.” The professional went on to imply that I was taking things for granted and using tax dollars for my own child’s benefit.
My daughter, who is nonverbal, had been at school in the US for about two months at that point. As a single mom who was unfamiliar with the educational, medical, and social support systems in the US, I was feeling frustrated while navigating the system of care and support for my child. I still struggle with balancing my cultural values while searching for services for my child with special needs. I don’t have a support network of extended family members here, as I would if I was still in Vietnam.
But when the school professional said those words, I realized I needed to step up and help my own daughter, as well as other Vietnamese parents whose children have disability. I established a support group for Vietnamese-speaking parents of children with special needs, called the Vòng Tay Cha Mẹ Việt (The Circle of Vietnamese Parents). Armed with my personal and professional cultural experiences, and my newly gained knowledge of the US disability service systems, I became a culture broker: a connector and negotiator between the Vietnamese immigrant community, and the system of social support available to them here in Boston.
Part 2: The Need For Cultural Brokering
Part 2: The Need For Cultural Brokering
When I was new to the US and overwhelmed with the complicated needs of my daughter, I attended many workshops, training, and support groups for parents. It was wonderful to meet and learn from other parents of a child with special needs who experience my situation, understand what I have been through, and are willing to share with me.
However, due to my cultural beliefs, I work hard to teach myself everything I can, rather than relying on others. And because I held professionals in such high regard, I never challenged my daughter’s educational team. As my knowledge of US support systems grew, I realized that following what professionals told me, and teaching myself, were not enough. I wanted to provide a strong voice on behalf of other Vietnamese women, many of whom lack understanding of their child’s disability. These mothers may also have different perspectives and expectations for their children with special needs, and at the same time feel isolated due to social stigma from their community.
I searched in vain for a support group for Vietnamese-speaking parents like me, and clearly, none existed. I learned that, here in the U.S., if you do not speak the language and you don’t assimilate into the mainstream, you will be forgotten. I realized, “You can continue on this path all alone, and nobody will help unless you break a basic cultural value and reach out for help.”
That’s when I started the Circle of Vietnamese Parents.
Part 3: From isolation to empowerment
Part 3: From isolation to empowerment
Many Vietnamese families have been isolated from the community due to a perceived social stigma, cultural difference, or language barrier. Culturally, these parents do not know that the system can help. When parents reach out to me, their stories may be very complicated, requiring intensive support in multiple areas, from medical and educational to social support. A few families have contacted me more than 150 times over the course of one year, both in person, or on the phone or via email.
Communicating with schools and participating in school activities is often not part of Asian culture. Many of these families have high expectations for their children, but they don’t expect a child with a disability to be independent and to work. It’s been satisfying to see some of the parents who attend my support group get more involved in their children’s education. Waiting for a child to talk without seeking speech therapy is common among Vietnamese families. With help from our group, some parents have sought services at an earlier age. Many have attended as many training sessions as possible, to become better educated about the system and make informed decisions in the course of advocating for their beloved child. These are positive steps, all growing out of opportunities to share our parenting experiences with others who share our road.
Part 4: Learning together
Part 4: Learning together
As one parent who has attended the group from the beginning, “I did not know anything before I joined Oanh’s support group. I just signed my child’s IEP right after every meeting as they wanted me to, threatening that if I did not sign, my child would not receive any services - even though I did not understand the document.”
The parent explained, “I did not know that I have the right to request an interpreter, nor ask the school to translate materials into my home language. I did not know that I would have to request for transition services for my child when she turns 14. My child missed so many services which she was entitled to while she was at school. Oanh helped me understand the special education process, how the system works, and also connected me to an attorney to advocate for compensatory services that the school failed to provide to my daughter while she was at school.”
Seeing parents become informed and empowered in this way is satisfying. It helps me feel that I am not only working for my daughter’s benefit, but for the benefit of our entire Vietnamese community.
Part 5: Catalyzing change
Part 5: Catalyzing change
In addition to providing direct support to families, I have been a guest speaker at Lesley University, Boston University, and UMass Boston. In my talks there, I’ve educated both undergraduate and graduate students about Vietnamese cultural values, perceptions about disability, and communication style. In this way, I hope that these students will become more culturally responsive to families they serve in the future.
I also collaborate with researchers to document culturally and linguistically diverse parents’ experiences with their children’s IEP process, healthcare access, and insurance access, either through focus groups or in-person interviews. As a result of language barriers, many parents don’t learn about support systems. My colleagues at the Federation for Children with Special Needs and I are addressing some of these language access issues. For example, although some translated documents are available on state disability websites, they are often not understandable due to the poor quality of translation. Providing better translations makes these documents more accessible and useful to families.
Part 6: Brokering change across communities
Part 6: Brokering change across communities
Many other culturally, linguistically diverse families face similar issues. I’ve collaborated with the Haitian-American Public Health Initiatives (HAPHI) to offer training, empowering Haitian-Creole-speaking parent leaders to become cultural brokers for their own community. I am also collaborating with Arabic-speaking parents of children with disabilities who want to establish a cultural support network.
To increase equity and access while respecting the unique cultural values of families from diverse communities, service providers must reach out to and reciprocally engage parents. By building mutual relationships and offering appropriate materials, cultural brokering groups like mine can empower parents and ensure service provision is culturally and linguistically appropriate.
This year, I am fortunate to be an AIDD-funded diversity leadership fellow with the Institute for Community Inclusion (ICI) at UMass Boston. My work here has entailed interviewing leaders in the disability field to learn about their career growth in this area. Secondly, we are developing and will be conducting a cultural brokering curriculum to empower parents and families. I hope to continue to be a champion for authentic diversity inclusion.
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