Staff Profile Update: Brandy James, PhD
Author, Advocate, Leader
Last May, we introduced you to our director of community education and outreach, Brandy James, PhD, who was just starting out her time at the University of Arizona Sonoran Center for Excellence in Disabilities. Now, almost a year later, we’re returning to look at her exciting new developments.
Looking back at her first year at the Sonoran Center, James emphasized how rewarding it has been to build community and help people find the resources they need. “Managing multiple projects and building community relationships has been really enjoyable for me. I love making those connections with our outside community, really explaining to them the work we do at the Sonoran Center and how they can become involved in the programs that we have.”
Dr. James is leading and participating in multiple initiatives around community education and is in the early stages of creating professional development opportunities for public health workers, pre-service early childhood faculty, and others serving individuals with disabilities.
James also recently produced three tip sheets focused on early education, which are available for download now:
- Supporting Children Begins with Supporting Relationships
- Building Collaboration in Early Childhood Teacher and Paraprofessional Relationship
- Exposure to Early Literacy for Deaf and Blind Children
One project she’s had a part in this month is the Tucson Village Farm Inclusive Cooking Class series, and she’s especially proud of how it turned out.
“We partnered with Tucson Village Farms, which is a UArizona extension farm off-campus, and the Southern Arizona Network for Down Syndrome. We all partnered together to develop a four- part cooking class,” James described.
“The participants would meet at Tucson Village Farm, they would pick and harvest their own vegetables, and then they’d go back into the kitchen and begin preparing a meal. So they’re learning cooking skills, knife skills, and just building community around cooking and the enjoyment that cooking and eating brings.”
The class was designed to be inclusive and intergenerational, with participants’ ages ranging from 11 to 80.
“We just had a wonderful time getting together, building community, learning new skills (I learned some new skills about cooking!) and the participants enjoyed working together and coming up with new recipes.”
Increasing Disability Representation in Children’s Books
On a more personal note, James is also proud to announce the publishing of her new children’s book, Makenna the Mighty. The book follows the story of young Makenna as she finds her way to thrive through serious illness.
The events of the book are based on a true story — one that is very close to James’ heart. In
2013, James’ daughter Makenna passed away at age 4 from a rare condition called Macrocephaly Capillary Malformation.
“She was one of 300 children born with that syndrome, in 2008, in the world. Subsequently, she
had about 26 surgeries related to the syndrome,” James explained. “Because of that, she had multiple challenges related to those surgeries, longer hospitalizations, and there came a point where she was really struggling and spending a lot more time in the hospital than she did out of the hospital. So, early that fall, 2012, she was placed on palliative care and hospice care. With that we decided she’s going to live her best life at home, and we started having adventures out in the community: going to parks, going to museums, and really letting her enjoy being a 4 and a half year old child. And after her passing I decided to write the book.”
For James, the writing process was a way to work through the turbulent emotions of that difficult time. “It was very cathartic for me,” she said. “I wrote it almost a year to the day after her passing. It was one of those nights where I just couldn’t sleep, she was on my mind, and I got up — it was probably about 3 in the morning — and I just started typing. It all came together
from there.”
Makenna the Mighty is nearly ten years in the making. Although the writing process took place in 2013, the challenge was finding the right illustrator to bring the story to life.
While Makenna’s diagnosis is rare, many people can relate to her story of learning to navigate the world with a disability. Specifically, James hopes the book can lead to greater representation of Black children with disabilities in the media.
“Of all children’s books published in 2019, only 3.4% featured a child with a disability as the main character,” James explained. “My goal is to continue this journey in writing — getting more books that feature African-American children, as well as other minority children, within those books.”
Thanks to the positive reception the book has received, a sequel is already in the works. “We’ve gotten great feedback, and we’re beginning to write book #2, so it’s going to be a series about Makenna the Mighty. The next book will talk about her experiences spending time with her grandparents, and then learning how to use some of her communication devices, breaking down her wheelchair to get into the minivan, just certain things like that to show their perspective of being grandparents of a child with a disability,” James said of the currently- untitled book.
James hopes Makenna’s story can inspire both children and adults to enjoy every day and take life’s challenges as they come:
“For children, you’ll see in the book there’s a picture of her spending time with her little cousin, and they had so much fun together. Part of that was understanding they can enjoy their time together: Yes, Makenna used a wheelchair, but they played tag, they went to the park together, we found a park that was accommodating to her needs, she could get on the swings, she could ride the merry-go-round - and they did all those things together.”
“And I think for parents, especially those of us who have children with chronic illnesses, that unfortunately don’t get to see their child grow up, it’s a testament to that side of the journey as well, to enjoy those moments, each moment is important, and to embrace those experiences.”
Makenna the Mighty can be purchased via Bookshop.org, Amazon, Barnes & Noble, Walmart, and Lulu Publishing.
