Why Representation Matters

By Rosabel Agbayani, H&V Headquarters

Individuals from diverse populations experience things in a different way. For families in underrepresented populations, this can pose a challenge in navigating systems (education, health, social services) designed for mainstream society. “Social Determinants of Health” describes barriers that can limit access to services and can include language, socioeconomic status, disability, gender, race, ethnicity, and even sexual orientation. To add another complexity, these families may come from minority groups that are insufficiently represented in the systems they are learning to navigate. It is not only important to empower those who are willing to be a voice, but to encourage and inspire those in underrepresented populations to represent themselves and be an active participant in the communities where they identify.

Family Centered Care and Representation

When my son was two years old, I noticed that his language wasn’t developing like other kids his age.  I recall that by his younger brother’s age, my eldest son could produce two-word phrases with clarity. I brought this to the attention of our pediatrician, (a very kind white male). He asked me if we spoke English at home. When I confirmed that English was our primary language, he proceeded to tell me that it was normal and because he was a boy, boys have a delay in speech. I felt dismissed, but who was I to question a medical professional?  I was just a parent. Within the same year our cousin, an ENT physician (who happens to be Filipino), came down for the weekend to spend time with the family. He noticed that our son had a significant speech delay and recommended we have his hearing checked. In hindsight, had he not said that there was a concern, we likely would not have had a diagnosis. I often wonder…  because we were Filipino, did our pediatrician just assume that a delay in language was normal?  I also wonder why I didn’t feel brave enough to question his thoughts. Clearly, I knew that my son’s development was off.

Now, working with families in diverse populations, I always make sure that a family’s concerns are validated. Although professionals come with a wealth of training, parents and caregivers are the ones who know their child best.

Within the Deaf/Hard of Hearing (D/HH) Community, the intersectionality (a combination of any number of social determinants of health) often encompasses a wider range of life experiences. This is important when considering the care and decision-making process of a D/HH Family. In the Health Care community, Family-centered care is building family/professional partnerships to provide services that assure the overall health and well-being of children and their families. These partnerships require the development of authentic relationships with professionals that honor a family’s strengths, culture, traditions, and expertise (Family Voices, 2021: Family Centered Care, from https://familyvoices.org/familycenteredcare/)

I often wonder if I had been more insistent on my concerns with my son’s pediatrician if it would have changed the overall outcome of the delay in his diagnosis. If our pediatrician would have taken the time to ask questions, maybe together we could have figured out what was going on together. I will never know.

Be the voice

Families can’t assume that they will get the care they need or the educational support their child requires simply by accepting a professional opinion. We need access to comprehensive information, and we must learn to be comfortable with communicating our concerns and asking questions from professionals. This dialogue between parents and professionals is especially important in underrepresented populations. The more we learn, show up, and actively participate, the more systems will recognize the need for both equitable and accessible services.

What happens when we represent?

We are counted.

We are seen.

We shape systems.

We influence change.

A Leader who “Looks like Me”

It is vital that we have leaders who represent the population that we serve. Hands & Voices recognizes a significant number of parents in the network seeking support whose primary language was Spanish. As a response to this need, we created the H&V Advisory Council for Latino Family Support. The work of this group of parent leaders across the United States helps to increase the capacity to not only help serve families who are Spanish-speaking but also gave an opportunity for existing leaders in the community to collaborate on resources, provide support to one another, and develop their leadership skills in a way that was meaningful to them.

Representation in leadership is vital for diverse communities because it acknowledges that their community is important and valued. It also sends a powerful message that “people like me” belong in the decision-making process in systems of education, health care, and social services. If people from underrepresented populations see people like themselves as leaders, they then become inspired to become leaders themselves.

Find your calling

If you are an individual that identifies with an underrepresented community, I encourage you to find your calling. Leadership manifests in three forms: For your child, for others, for the system.

For Your Child: 

Maybe you are a parent with a newly diagnosed child. You can learn about your child’s diagnosis by participating in parent-to-parent support, parenting classes, or other educational activities for personal growth.

For Others:

If you are a more seasoned parent, I encourage you to share your personal story. Never underestimate the power of your story. A well-told story has the potential to touch hearts and change minds. Stories shape our shared human experience. The Hands & Voices Communicator is always looking for stories from families from diverse backgrounds.

For the System: 

As a parent leader championing the cause for children who are D/HH, your personal experience stories can pave the way for policy and systematic change.

Leadership starts when you decide to do something instead of letting someone do it for you.

When I attended a Hands & Voices Leadership Conference in 2017, this was the first time I had been exposed to a leadership training dedicated to parents raising D/HH ch  ildren. What a world of knowledge I immediately had access to, and I found myself surrounded by others like me experiencing similar challenges. Immersing myself in the presence of parents who were doing the work I had dreamed of–helping other families–inspired hope at the beginning of my journey as a parent leader. I was asked to be a part of a panel on Diversity. It was one of the first times I spoke in front of an audience. What a feeling to be sharing my story and my journey alongside other leaders like me!  It was empowering and I will never forget that feeling!  Years later, I live for the chance, every day, to encourage others to find their own leadership calling for their own child or in service to other parents. The more that people see that people like me have a voice, the more systems will understand that we cannot be ignored. The more people from underrepresented populations participate, the more likely services and education will reflect the needs of all communities. Hands & Voices is committed to serving that vision.  If you would like to start on your leadership journey and represent your community, I encourage you to contact Diversity@handsandvoices.org.  ~

H&V Communicator – Spring 2022