Sharing the Journey with Jeneva: Jamie Davis Smith on Writing About Children with Disabilities

Jeneva is excited to interview Jamie Davis Smith, a mother of four who lives in Washington, DC. She is an attorney, writer and disability rights advocate. Jamie is a member of Little Lobbyists, and her articles about her family's experiences with disability and advocacy are frequently featured in national publications.

Tell me about your family.

My husband and I have four kids, two boys and two girls ranging in age from 5 to 13. We have a very busy and loud house. We like going for walks around the neighborhood, hikes on accessible trails, seeing movies, and going to accessible playgrounds. Our absolute favorite thing to do as a family is go to amusement parks.

Claire is 13 years old and loves ice cream, being in or near water, puppet shows, people watching, and being tickled by her siblings. She loves school and looking through books (especially if there are pictures of the beach) and fashion magazines.

Tell me more about Claire's complex medical needs and disabilities.

Claire has a duplication of chromosome 2. Her syndrome does not have a name because it's so rare, but this syndrome has impacted nearly every part of her body. For example, the hemispheres of her brain are not connected, and her heart is not in the proper place. She has multiple disabilities and is medically complex. She has intellectual and developmental disabilities (I/DD), epilepsy, autism, and asthma, among other health issues. She communicates with a limited number of signs, and by pointing, and is learning to use an assistive communication device. She uses a wheelchair and needs full support for all activities of daily living from feeding to getting dressed.

You've written a lot about Claire for publication. In the disability community, there's sometimes been controversy when parents write about their children with disabilities. How have you dealt with your own feelings about this? What steps have you taken to protect Claire in your writing?

In all of my writing I try to introduce the readers to Claire and make sure they get to know her. In a way she could be any child. There are some things I do not write about. I do not write about anything that I think would embarrass her or share her worst moments. Sometimes I struggle with this because Claire cannot give me consent to write about her. I was very private before the 2016 election about Claire, but compelled to share more of Claire's story after it became clear that her access to healthcare and education was under attack. At that point I felt that it was in Claire's best interest to speak up about what was at stake. While Claire cannot give consent for me to write about her, as her parent I make all kinds of decisions for her as I do for Claire's three siblings. I may not always get things right, but I always try to act in Claire's best interests and speak the truth. I always try to do what is best for Claire, even if that means speaking some unpleasant truths or exposing some parts of our lives I would have otherwise kept private.

What's your advice to parents who are seeking to write and publish about their children with disabilities?

If your children can give consent for you to write about them, make sure you have it. Anything that you publish may be around for a long time, and your child may find it one day. Even if you have your young child's consent, remember that as an adult you are in a better position to understand the consequences of writing about something potentially embarrassing about your child (such as toileting issues) or that may have consequences your child may not anticipate. Unfortunately, we still live in a world where people with disabilities are discriminated against, and publicly sharing a mental health issue or autism diagnosis may have consequences for your child later in life. It should be your child's decision whether they want to shoulder that risk of not. In that respect, I’ve been astounded at the capacity some teenagers and young adults have to understand how sharing their stories can help others, and readily agree to share some intimate details of their lives.

How have you engaged Claire in self-advocacy, and how do you hope to continue to do so in the future?

As part of Little Lobbyists, Claire has gone to the Capitol and attended many other events such as press conferences and protests. She is able to quite literally put a face to the attacks on the Affordable Care Act (ACA), Americans with Disabilities Act (ADA), Individuals with Disabilities Education Act (IDEA), and other issues impacting disabled people. She is able to advocate just by showing up and being herself. She loves being around people, and I hope that she continues to enjoy herself while engaging in advocacy.

How has advocacy given meaning to your life and to Claire's?

We have been able to bring about real change, both nationally and locally. When an accessible swing was removed from our local playground, my writing about Claire and sharing how much she loved the swing resulted in the swing being replaced. When our local elementary school began locking accessible lifts, our sharing Claire's story (including how we were trapped in the school for over 20 minutes while staff searched for the key) helped to make the school more accessible. With the ACA under constant attack, sharing what the ACA has meant for Claire has helped convince both the public and lawmakers of the importance of access to healthcare. I am proud of what we have accomplished, but know that there is still a lot of progress that needs to be made. Nearly everyday we are faced with obstacles in Claire's way, from cars without handicapped placards parking in much-needed accessible spots to able bodied people sitting in accessible movie theater seats to playgrounds that lack accessible equipment. Then there are the larger issues such as attacks on healthcare and special education. Claire and I, along with her siblings, know that we can use our voices to bring about change and make the world a better, more accessible, and more understanding place for Claire.

If you could define advocacy in a single sentence, what would be your definition?

Advocacy is a way of ensuring your rights and needs are not overlooked, and a way of "bending the arc towards justice," as Martin Luther King, Jr., said.

In these troubling times, what gives you hope?

I have hope that so many people are speaking up and showing up. I have hope that so many people are outraged at the injustices we see in our economic and healthcare system, which injustices disproportionately affect people of color, resulting in deaths at higher rates from Covid-19 to police violence. I have hope that the action we are seeing in the streets will translate to real change. I have hope that voters will cast their ballots in record numbers this November. I have hope that more people are beginning to realize that they are complicit by remaining silent, because remaining silent favors the status quo.

Jeneva and Rob on a visit to the Senate office buildings

We hope you enjoyed this installment of Sharing the Journey with Jeneva, a recurring feature on our Little Lobbyists blog. Through these interviews we will share the advocacy journeys of caregiver/parents and disability self-advocates, inspiring us to forge ahead together. Send an email to Jeneva if you have any questions you'd like to see, or if you'd like to be interviewed for a future installment of this series!

Jeneva Stone is the manager of the Little Lobbyists blog. She's worked as a teacher, a government editor, and a Hill staffer. Jeneva is also a writer, with numerous publications in poetry and nonfiction. She lives with her son Robert, who has complex medical needs and disabilities, her husband Roger, their two cats and a dog in Bethesda, Maryland. Her second child, Castin, is currently a student at Middlebury College.