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“Because I Am Loved”: Children’s Book Author B. Keith Fulton Shares New Book About His Disabled Sister Shauna

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In October, I was contacted by renowned writer and illustrator Jerry Craft about a children’s book he illustrated, Shauna, that featured a disabled girl of color protagonist. Being that I had put out a call to spotlight more diversity within children’s books, particularly those with disabled people of color characters and/or written by disabled or able-bodied authors of color, I was elated to learn about this new book.  Jerry connected me with the book’s author, B. Keith Fulton, and B. Keith and I did a phone interview towards the end of that month.

I wanted to share the interview I conducted with B. Keith about his vision for the book, why it meant so much to him to share his sister’s, Shauna, story with the world in this capacity, and how authoring a book with such a powerful message impacted him.

Without further ado, B. Keith Fulton ramps his voice about Shauna:

 

Tell me about yourself.

I am from Hampton, Virginia.  I am a communication executive; I have ran the Virginia companies for Verizon for a number of years, and have an extensive business corporate background.  I studied Management and Policy Analysis at Harvard University’s Kennedy School of Government; obtained a Master of Science in Management and Policy Analysis from the New School for Social Research, Milano Graduate School of Management and Urban Policy; and earned a Doctor of Jurisprudence (J.D.) with a focus on Electronic Commerce, Intellectual Property and Telecommunications Law at New York Law School.

I am married to Jacquelyn Stone, who is also a lawyer; we have twin teenage boys, Joshua and Terrell.

 

Tell me about your sister, Shauna, and the relationship you two have.

Shauna is my younger sister.  I am one of three.  My older sister is 3 ½ years older than me, and Shauna is 7 years younger than me.

The Fulton Family portrait, with B. Keith and Shauna sitting in front of their parents.

Shauna is 42-years old.  She lives at home with my parents, Bennie and Flora Fulton; she has always lived with them.

When I was in junior high and high school, I had to come home and take care of her when she got off the school bus until my parents got home.  Shauna has Rett’s Syndrome, a condition where children get to a certain age and they regress instead of progress developmentally.  Only females survive having Rett’s Syndrome.  Those with Rett’s Syndrome are totally dependent on their caregivers.

 

Having to provide support and care for Shauna during that period in my life has taught me things about traits like nurturing.  Shauna does not communicate in the traditional way, but if you paid attention to her signs and sounds, you can kind of figure out what she wants or needs.

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Shauna as a toddler.

My sister and I became close, naturally, with the amount of time we spent together.  It was a blessing to me, particularly as a male, because we are not usually taught how to be nurturing, and being with and caring for Shauna taught me those things.  I had no idea that later in life, that paying attention to Shauna’s cues (such as her signaling when she needed to use the restroom or was hungry, or certain movements she would make when she was uncomfortable) would benefit me profoundly.  Caring for her helped to develop me both as a person and as an executive.  When I meet outsiders in my corporate work, I can read social cues easily and assess who is my ally or supporter before a meeting begins or while talking with clients and other professionals.  Reading these cues afforded me the chance to strategize what I need to do in order to make situation end results optimal.

 

What gave you the idea to write the book?

The book was inspired by the poem I wrote about Shauna when I was 16.  The book and the lessons learned evolved out of that experience, out of realizing where those talents came from – that gift of social perception.  The premise of the book is that there is a blessing in caring, and we should not look at it as a burden.  I tried to relay that reality, that truth, in the book, which is an adaptation of a poem I wrote in my youth.  I thought, if I could get an illustrator, then we could bring some of those words to life, and create a book that is not only targeted to children, but also shines a positive light on caregiving.  I believed it was something that people should hear about because we do not always appreciate the gifts and talents caregiving affords us.

I used to think that the “much” of life is focused on a specific talent – a talent to write, a talent to sing, a talent to dance, play a sport or an instrument.  I came to learn that the much is life itself – if you are alive, male or female, young or old, Black or White, fully abled or not – if you have breathe in your lungs, you are on the hook.  By that, I mean you have been given a great gift, and our job is to give back, and do something with that.  As the saying goes: “To whom much is given, much is expected.”  When we woke up this morning, we all have been given the much, and it is your charge to do something with that.  I had mentioned on social media that one of the lessons I learned is what I remember hearing growing up: “One of the best ways to get on your feet is to get off your ass.”  Though it may be a crude saying; it embodies a plain and simple truth.  At the end of the day, if you are given life, you have got to do something, do something different.  You do not have to stay there in the same place if you do not want to stay there.  The book is meant to be an inspiration to caregivers, as well as paint a different image of disability than what is normally perceived.

 

What is the basic concept of the book?

With the book, the reader is asked not to have this particular kind of sympathy so much so, that they do not think Shauna is relevant, or themselves. It is asking them to look differently.

[B. Keith recited the original version of the poem during our interview, to provide a better understanding of the book’s concept.]

A gazing little boy stopped and asked . . .

 

Can you run?

Yes, adjusting her leg brace.

 

Can you dance?

Yes, adjusting her position in her wheelchair.

 

Are you happy?

Yes, adjusting hear gaze towards Heaven.

 

Big Brother, in your new found wisdom, don’t count me out . . .

 

I run in my mind.

I am an Olympian.

 

I dance in my dreams.

I am a debutante.

 

And I am happy,

Because I am alive.

 

For the book, Nikki Giovanni wrote the cover quote on the back of it.  When she read the book, the only comment she gave me was about changing the concept of “being alive” to “being loved.”  She thought that since it is a children’s book, some children may not fully grasp the concept of being alive, and how much of a blessing it was.  To simplify that, she suggested “repackaging” the concept by saying “because I am loved,” which is the last line of the poem.  That is why I consider the book an adaptation of the original poem due to the word switch.  I believe that the change makes the book more easily understood by all readers because people can appreciate the concept of love and being loved, especially young children who seek that from their parents and loved ones.

 

What was Shauna’s reaction to seeing a book that was influenced by her?

Shauna’s reaction to the book was her smiling. I hoped that from its creation she knows she is very much loved by us.

 

Was it challenging to find a publisher who would support the book’s concept and/or a disabled protagonist?

I had a publisher to jump right in when I presented the book concept to them, but then they wanted to give me only 10% of the book revenue, and I had to cover the costs associated with the printing of a hardcover book, marketing, and other things.  This made me take a huge step back during the negotiation process.  When I looked at the whole picture of having the book published in the traditional manner, I realized that I would benefit from self-publishing the book, and keeping the earnings I made from that route.

I reached out to Jerry Craft (whom I had worked with at Time Warner some time ago) because of his own book publishing success, and asked him to be the illustrator for the book.  We found someone who would print it as a hardcover book, which was important to me because I wanted it to feel like any other book (the book is 34 pages).

 

What was the book creating process like?  And working with well-known illustrator Jerry Craft?

The book process was very smooth.  We devised a plan and got the book project done quickly.  We started in August of last year, and by December, it was completed and published.

Jerry understood the vision of the book, and basically ran with it.  I sent him a picture of Shauna and one of myself, and he took it from there.  From what I could see, it was an easy book illustration project for him to do.

From the ease and swiftness of creating the book, I did not need to take the traditional book-publishing route with this project; a decision that was the right one to have made.

 

What has been the reaction of the book from readers, particularly caregivers and siblings of those with disabilities?

The response to the book has been overwhelming.  I had a belief that the message itself would resonate with people, but it is fun nowadays to see and hear the responses from those who appreciate the book and the fact that it exists.

Many people have told me that they have cried from reading it, and how happy they are that I wrote it.  I wrote the poem many years ago, and making it accessible to people was something I wanted to do, and my wife and Jerry was able to assist me in getting that done.

 

How do you want disabled children and adults to view this story, particularly disabled people of color?

I want them to be proud of it, to see themselves in the images.  It is a human story, it is not designed for just one culture or ethnicity; it is about real people who just happen to be African American.

 

What do you hope this book does to raise awareness about Rett’s Syndrome?

Because it is a rare condition, it would be good for people to learn more about Rett’s Syndrome.  We have resources listed in the book for further research and understanding.  If that is indeed one of the book’s impacts – people becoming more aware about Rett’s Syndrome – then that is great.  At the end of the day, as long as people walk away with a good message about love and caring as being lessons of life, then that is the primary goal.

However, other opportunities that could be afforded are the aforementioned greater awareness about the condition, greater awareness and different look at disability in minority communities, and a more positive view of individuals with disabilities.  All of these are additional benefits that comes from producing something meaningful and having the talent to illustrate it like Jerry Craft, along with the possibility of people walking away with the feeling of, “you know what? I’m blessed, I’m alive, and I can do whatever I’m prepared to work for.”

 

Are there any other children’s books about Rett’s Syndrome, and have you connected with the Rett’s Syndrome Foundation about the book?

I am not familiar with any children’s books that focuses on Rett’s Syndrome as mine does.

With the earnings from the book, I plan to donate a certain portion to the Rett’s Syndrome Foundation.  Those within the Foundation do not know of my plans, to my knowledge, so I hope that they react well to the surprise donation I am prepared to bestow upon the organization.

 

What do you want those who have disabled siblings to gain from reading Shauna?

Continue to love their sibling; not to limit their sibling because their packaging may be a little different, or how they achieve certain goals may be different.  I want them to respect what they have learned and gained from being in a household with someone who may need a different kind of support than them.

I believe that those things that are different about how we are raised or who we are that makes the world so wonderful, and if there were no challenges, then there would not be any progress to be had; you fall down so that you can learn how to get back up.  At the end of the day, I hope siblings appreciate their disabled sibling and embrace that experience as part of who they are.  That experience will play a significant role in shaping them, especially in the space of their life accomplishments.

 

How has writing this book changed you?

It made me better.  I am probably wiser, and when I do the next project, I have the experiences of this one to draw upon.  I fully grasp the importance of writing something meaning for the future readers I hope to impact.

 

Are there plans to write a second book about Shauna?

At this point in time, I have not thought about further exploring Rett’s Syndrome as a subject, or writing a biography about Shauna as a standalone piece.  However, if I do write about those things, I would likely incorporate them into a larger story about my family and how we got to where we are (which would be in a form of a memoir).  Shauna’s story would definitely be a big part within such a biographical book; along with my own story, and my parents, grandparents, and great-grandparents, as well as the people I knew who came into my world.

The two books I am working on share the theme of love as this book does. I will always try to find a way to write about love.  The two books I am working on, Insurrection (tentative release date, 2017) and Breadcrumbs (tentative release date, 2019), will be geared towards an adult audience.

 

Final words you want to share about the book, your experiences, and/or about Shauna?

God blesses each and every one of us with the ability to turn our dreams and ideas into their tangible equivalents.  We must embrace the visions, have the expectations and faith that we can achieve, be willing to do the work and stay encouraged to do our part, and then enjoy the fruits of that labor.  We should do what we can to make it a great day, and live each day with rejoicing!

 

* * *

Final Thoughts

Hearing the pride in his voice about creating something as poignant as this book was indeed a pleasure when I talked with B. Keith.  There is so much love and respect B. Keith has for Shauna, and how she has influenced his life in a multitude of ways that one may not think could happen.

I am adamant about supporting authors of color, especially those who share the disabled experience with such an affirmative, uplifting message.  Tis the season to consider what books you may want to get the big and little kids in your life – I highly suggest putting Shauna on your Christmas gift list this holiday season, especially since the season is about loving and appreciating one another.

To purchase the children’s book Shauna, visit MyShauna.com.

To learn more about Rett’s Syndrome, visit the Rett’s Syndrome Foundation’s webpage, which is the organization B. Keith will donate a certain amount of the book sales to.

(Featured headlining images:  Courtesy of B. Keith Fulton.)

About Vilissa Thompson, LMSW

Vilissa is the Founder & CEO of Ramp Your Voice!, an organization she created to establish herself as a Disability Rights Consultant & Advocate. Ramp Your Voice! is a prime example of how macro-minded Vilissa truly is, and her determination to leave a giant "tire track mark" on the world.

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