Feature Issue on Engaging Communities Underrepresented in Disability Research

I’ve lived in Chesapeake all my life, and I love that I'm well-grounded in the area and know my community well. I am still friends with people I went to elementary school with, and I am thankful for our memories. I believe my community has helped my growth as an individual. My mother moved to America from South Korea after meeting my father while he was stationed there. My father's side of the family is from rural North Carolina. Many people don't realize the two cultures have much in common, both being family-centered. This means that when we need help, we go to our family first. This affected my early childhood because I did not receive many disability services, which makes me more grateful for what I have now. My mother fought hard to get me into the general education classroom in the third grade. I'm very thankful she did this because not only did I receive an excellent education, I made so many friends. Some people may wonder how I could be grateful for hardships, but I believe that they made me learn how to work hard and never give up.

My hope for the future is to continue my work in the disability field, connecting with other people with disabilities and learning from them. While we may have similar life experiences, there is always something to learn from others. Along with this work, I hope to continue building the nonprofit I founded last year. It has been a challenging journey so far because I am not familiar with the process on the legal side. Again, I look at it as an opportunity to learn and grow. The nonprofit is for women, and I hope to help encourage women in their Christian walk. My faith is the core of my being, and it is what gives me my ultimate purpose in life. The ministry aims to help women with and without disabilities fulfill their calling. My life partner suggested the name, Roll Called, and it still makes me smile.

Angela West: “Disability is different for everyone.”

Disability is different for everyone, and how we approach it needs to be respected. I believe that this includes how we participate in research as people with disabilities. In the past, some people from underrepresented groups were not included in research, that is why I feel it is important to bring all cultures and their expertise to the table. My mother and father raised me to try everything and work hard at achieving my dreams, and that has pushed me to excel in life. I knew I wanted to be a teacher at a very young age because I love watching young minds learn and grow. Many people did not think this was an achievable dream, however, and their attitudes created obstacles for me. I remember one day in high school at my IEP meeting, when an assistant principal told me I needed to change my dreams. I left feeling discouraged, but had a social club meeting later that day. I told my best friend what the assistant principal said to me, and she looked at me and said, “she doesn't control your dreams, and you can't let her change your calling,” with a spunky, teenage girly attitude. I believe my best friend changed my life that day. There are days I still question myself and my dreams, and she has constantly been there for me. While I'm not an in-classroom teacher, I still have many opportunities to teach others at conferences and workshops. So, yes, my dream has been achieved!

While working in disability research, I have learned how important it is to include people with disabilities in the process. This includes coming up with research topics important to different people with disabilities, including those from different cultures. I have views that are different from others about disability, and that is OK, because I only speak for myself. Sometimes I think some researchers get wrapped up in the academic world and forget to talk to people. They may have a great idea on paper, but it may not be the reality of those who live it daily. On the occasions that they do talk with people with disabilities, the language that they use is not accessible. I advocate using plain language when talking to people about research. The conversation with people with disabilities is where it needs to start. We still have much work to do to include people with disabilities in the research.

I also believe it is imperative to have people with disabilities on research teams that make critical decisions on the research process. Too often, people with disabilities are invited to the research team without any power to direct the process. This leads to tokenism, which looks like they include people with disabilities but in turn do not value what they say, making it unproductive. People with disabilities bring value to the team. They may offer their knowledge that could change the direction of the research. For example, how a person with a disability may define social inclusion may be entirely different from those who do not have disabilities. Someone with a disability may not want to go out into the community as much as others do because they don’t view it as important to their well-being. Without having detailed conversations with people with disabilities, researchers lose out on learning what people with disabilities really want.

I also believe that it is fundamental that we pay people with disabilities when they participate in research, and pay them a respectable wage. They are giving up their time, expertise, and energy to participate in the research. This must be included as a budget line item from the very beginning. We must advocate for this when we talk to our funders and those in leadership at organizations. Our research will not be complete without achieving this expectation.

The State of the Science meeting at the Institute on Community Integration was a fantastic experience for me. I enjoyed meeting other people with disabilities and researchers who were not afraid of having difficult conversations. I felt like when people were talking, the others showed great respect, listening to learn. That gave me hope for the future of disability research. While I thought we had a great representation of people with disabilities, we need to reach people who are not as active in disability advocacy. It may not be as easy as sending an email invitation, and it may require us to take a journey into the community to partner with those who have not been included in the past. First, however, we must form relationships and build trust. Trust must be the foundation of all research!