Childhood Trauma Leads to Advocating for Children with Differing Abilities
On the first day of summer vacation, when I was six years old, I was playing with Barbie dolls at my best friend’s house. When I left to walk home, I was hit by a dump truck and my left leg was crushed. Luckily, I don’t remember any of it. I was fortunate to be taken to the Mayo Clinic, where my leg had to be amputated and where I spent the summer in rehab. While all of this was happening, I was focused on my immediate goal – to get to first day of second grade. I went back to school that Fall but didn’t feel different, and although they had questions, my friends accepted me, because I was still me. My parents made sure I returned to my normal activities–Brownies, tap dancing, and riding a bike.
There were no adaptive sports or resources then and my school didn’t know what to do with me. When placement in special education was suggested, my Mom said, she lost her leg, she doesn’t need special ed. Despite everything, my life was normal. I wouldn’t say it was always easy, and I wouldn’t wish it on anyone, but those were the cards I was dealt and, overall, I felt very fortunate. That early mindset and resilience, set the stage for my life and for how I accepted my circumstances.
Today, I am 49 years old and I live in Minneapolis. Much of the early part of my career was in healthcare; first as a pediatric nurse and later as a clinical researcher and hospital administrator. Eventually, I developed an urge to go back to school. At the age of 36, I decided to go to law school, graduated when I was 40 years old and began doing legal work for a local company.
Unwilling to relocate when that company moved to Austin, I took advantage of the free education offered because I was displaced from my job. Having developed an interest in global health, and especially access to health care for children, I found a summer program in Geneva which led to a graduate certificate in Global Health and Human Rights. It was a life-changing program and the next summer was invited to return as a visiting professor to lecture on the Rights of Persons with Disabilities.
In 2007, I decided I wanted to get more deeply involved with children who had limb loss, because of my childhood experience with it. Over the years, as a hospital volunteer, I had done a lot of peer visiting with people with limb loss and started a support group. Although I lived with limb loss, I never felt I could relate as a peer since many of the patients were usually young men who had been in motorcycle accidents, or adults who had lost limbs to diseases such as diabetes. Instead, I felt a true calling to help children.
My interests turned to what was happening globally for children with disabilities, particularly those with limb loss. I found World Health Organization research about the rights of persons with disabilities, a protected population under the Geneva Convention, the international laws protecting human rights.
Helping Those Who Need It Most
It struck me that children who are disabled are denied basic human rights – life, education, health, dignity – and the list goes on. That could have been me, if I had been born elsewhere. In fact, I might not have survived but for the excellent medical care my parents were able to access and provide. Additionally, as a girl, I wouldn’t have had education or any of the same experiences I have had, such as becoming a competitive skier. I made the decision that I had to do something about this inequity. When I tell this story I still get goosebumps because this was a turning point.
I contacted UNICEF and Save the Children to learn about their services for children with disabilities. Both organizations had a broad focus, but nothing specifically, for this population. There were also organizations that tried to get donated prosthetic limbs but kept running into obstacles. I realized what I wanted for these children didn’t exist, but I wasn’t sure what I should do.
At about the same time I had also written a draft of a motivational/inspirational book. But when I read it I decided I wouldn’t want to buy it! It felt false because I don’t define myself as an “amputee” or as “disabled” — that just wasn’t me. I reevaluated what I wanted to do and decided to write children’s book with the voice of a child adjusting to life with limb loss. When you’re that child losing a limb, you can’t even imagine what comes next.
In three or four hours I wrote a draft of a children’s book—it just flowed naturally. At the same time, I came up with an idea for a toy to accompany the book. I remembered being a patient in isolation in the hospital for eight weeks, when I couldn’t have favorite dolls and toys from home. My brother brought a toy rabbit from hospital gift shop and it was great comfort. The toy prototype is being developed and is named “Lolo”, one life one limb(backwards), as a tribute to my life with one limb. The book, Lolo’s Superpower, is now available at Lolo’s website and Amazon.
I am on the path to realizing my goal of running a foundation that will provide access to care and devices for children with differing orthopedic abilities. I have traveled to Ghana where I am partnering with the Orthopedic Training Center. At first, I volunteered there while doing my due diligence. The children have lost limbs primarily because of trauma such as car accidents. I spent time with these children and they realized I had a prosthetic leg as well. I had researched cultural perceptions of disability in Ghana to prepare for my trip. Often, I found that those with disabilities are treated as less than full people. Babies born with disabilities are not acknowledged. As a result, it is difficult to know how many there are who need help.
Another population we visited was housebound children with Cerebral Palsy living in huts. Everything I saw confirmed the need that I thought existed. It was an incredibly emotional experience. I found myself putting my “nurse hat” on to think clinically about how to help these children. I knew I could play with them and interact, but that was not enough.
It became apparent to me that in addition to access to care and devices, these children need a voice since they are unable to advocate for themselves. The foundation, Project Lolo (Love Ourselves, Love Others), will try to do just that. The organization now has non-profit 501c3 status, and I am introducing it to potential funders. I’m kicking off fundraising events called “Welcome to the World” parties, to explain the issues, the statistics and realities for these children. One statistic that is very tangible is that it costs only $350 for a child to get the care and prosthetic device needed to change his or her life immeasurably. With the permission of the clinic I have photos of the children. I want to convey their incredible resilience to potential funders. One goal is to become a UN accredited organization within 2 years.
I have worked on developing this foundation for three years. All the while, working my “day job” in medical compliance and a consultant to corporations. This is a very exciting time as Project Lolo becomes a reality. Eventually, I will be the full time Executive Director of the foundation. This will be my “day job”, as soon as enough funding is secured.
My advice to others who have a passion, or an idea, is to trust your vision and your gut even if others don’t really understand. I feel as though at some point in this process I closed my eyes and imagined myself on the edge of a cliff. But now, having passed a few hurdles in the process, I am enjoying the journey. The feedback I have received in the community of potential supporters has been gratifying. I feel I am on my way to helping deserving children to live fuller, more productive lives. For more information on the foundation please visit our website https://www.projectlolo.org.
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