Feature Issue on Engaging Communities Underrepresented in Disability Research

With three Black sons, I (Donné) don’t have the luxury of not talking about the racial divide, and our sons have experienced real-world differences first hand. That is why it has always been important to my husband, Ed, and I to emphasize education and get them all enrolled in rigorous courses, including language immersion. This was important for me, because as a mom who grew up in the same school district my kids are now in, I know that special programs can shield you from a lot of general discrimination. It’s just the culture of these programs. As a student, I was in honors classes and I could see the other students not being treated the same as we were. That distinction was used to treat people like their value is not as high as others. Even though I don’t value that, I didn’t want my children to be guinea pigs or in a situation where their value was seen as less-than.

Asante Allen customized his Charting the LifeCourse goals to reflect his family’s Kwanzaa celebration.

Knowing where we come from has been a difficult journey. We did African ancestry DNA tests and some family members have researched our history at the Library of Congress so we can tell our children, “These are the people you can see your faces in.” We were able to trace our family back to West Africa, and our ancestors were enslaved in South Carolina. For a long time, we didn’t see much diversity in disability advocacy groups, but that’s starting to change.

Asante was born with dwarfism and cerebral palsy, and that adds a layer to what he deals with every day. I’m glad God blessed him with an outgoing personality because he handles all the stares from people. Sometimes I admit I just want to go into Trader Joe’s and be anonymous, but he will walk over and start talking to people. He takes a wall down and is an easy conversationalist. We live around a lot of different cultures and when you have that convergence you can tell there are cultures that are welcoming of disability and those that are not. He is often better than me at handling this.

I (Asante) just talk to people, and a lot of times I’ll just joke around with them. If I’m at the doctor’s office, if they say something I don’t follow, I’ll just say, “What are you talking about?” I also ask a lot of questions. One of my doctors is a twin, like me, and so we talk about that. My twin brother, Bishop, annoys me a lot but he represents for me, too. I’m 16 minutes older than Bishop, and I have an older brother Xavier who is a star football player. I love being on the football pep squad and cheering for his team.

We have worked together to incorporate Charting the LifeCourse (CtLC) concepts into our individual and family lives. (see Program Profile next page)

I (Asante) put our family’s Kwanzaa celebrations into my CtLC profile, including the way we talk about the principles. I was excited to do it because I was planning my own future. I talked about unity, self-determination, being motivated and self-confident. It’s important that I’m the one who decides my goals; that I’m the one in charge.

At SEEC, I (Donné) am a CtLC Ambassador and coach, and I see many other examples of how people adapt the CtLC tools to showcase their cultural values.

Many participants incorporate their cultural values into their visioning process. One example was a woman from a Washington, DC cohort who used pictures to create a map of family members that could be helpful to support her future life vision. In this example, you can see the large extended family and the many ways the family celebrated cultural holidays and family gatherings. From wearing matching shirts to family reunions to church volunteering events, the pictures were the evidence that family and culture were at the center of this woman’s life and she had many people to call upon to advocate and support her.

A Black family with two parents and three sons stands at their front door, smiling. They share their personal story about the intersection of race and disability in the new issue of Impact.

The Allen family at home.

This started for me when I was the Parent-to-Parent coordinator at SEEC and the SEEC CEO Karen Lee asked me to attend an event and find out about Charting the LifeCourse. I had just done a visioning session in special education and I knew that this would be a tool we could use for many different goals. As a parent, I knew how having a vision statement to help sustain me through all the medical appointments and diagnoses would help. We didn’t even get his cerebral palsy diagnosis until he was 5. We knew he had vast differences with other people with dwarfism, but cerebral palsy had never been verbally confirmed to us until we asked about it. One day I was looking through all his paperwork at the doctor’s office and asked about a medical term I wasn’t familiar with, and they said it had to do with his cerebral palsy. All I had known about was his dwarfism. It was like getting a whole new diagnosis and the original vision helped us to focus on what we desired for his life outcome rather than another diagnosis. Having a vision helped to sustain my mental health during those tumultuous years.

Creating a vision for where you see yourself and as a parent, to communicate that idea to your child, is so important to get them on the path to doing it for themselves. Writing out that vision every year for the individualized education plan (IEP), I wanted to ensure I could capture all of who he was, because he’s so much more than how he does on a math test. Those two little paragraphs they give you on the IEP aren’t enough. So, starting when he was in second grade, I used Charting the LifeCourse for creating his profile and it profoundly changed the way his teachers worked with him. They changed the way they were teaching him math because of his love of sports, for example. Using more voice-to-text also came out of that.

Each year around Kwanzaa, we discuss the principle for the day and we each take turns reflecting on the impact in each of our lives. We drink from the same cup to show our family unity, which is one of the principles, and we say the principle for each day as a way to be committed to upholding it for the next year. The other principles are self-determination, collective responsibility, cooperative economics, purpose, creativity, and faith. What I (Asante) thought most about this year was self-determination, and being motivated and in charge. It’s important. I have a chip on my shoulder because I’m short and I’m Black and that motivates me. Don’t put me in a box.