Be The Change

My senior year of high school our class motto was “Be the change” – I remember consistently eye-rolling thinking, seriously, be the change? As I’ve gotten older though this phrase has remained with me, always in the back of my mind. I work in a system that pushes me, requiring change in order to best support those I serve.
If not me, then who? This phrase is so much more meaningful to me at this phase in my life as I see it from a new viewpoint. This is not a slogan or a motto it’s a call to action and a phrase of empowerment. This reminds me that I am capable of igniting change and I am worthy of using my voice. If I don’t, who will?
Today’s Tuesday Takeaway is just this – a woman using her voice and feeling empowered to create change.

Before we begin today’s story, place yourself in a moment – you’re twenty-two years old and informed you need a heart transplant. Does it ever cross your mind that you could be told you are not a candidate for transplant as your observed quality of life factors you ineligible? Likely not, however unfortunately this has been a reality for individuals living with disability for years.

According to the National Council on Disability (2019) the primary forms of disability discrimination practiced by organ transplant centers are the refusal to evaluate a person with a disability as a candidate for transplant and a refusal to place a person with a disability on the national organ transplant waiting list. So to return to our example, you are a twenty-two year old with Down syndrome being told you need a heart transplant, imagine having to wonder if you will be granted this necessity? You are Charlotte Woodward. Currently in 2020, only fifteen states have organ transplant discrimination prevention legislation (CA, NJ, MD, MA, OR, DE, KA, OH, PA, WA, LA, IN). Within this first week of 2020, three more states have now passed legislation including Missouri, Iowa and Virginia, thanks to Charlotte. Sadly, families will move state to state seeking support so their loved ones with a disability can be given equal consideration when in need of transplant.

Charlotte Woodward is from Fairfax, Virginia and has Down syndrome. Charlotte was born with an atrioventricular heart defect that includes a hole in the wall between the heart’s chambers and flaws in the valves. It is an extremely common diagnosis among babies with Down syndrome – approximately half of babies born with Down syndrome have a heart defect at birth (also including my Emily!). Throughout Charlotte’s childhood she endured multiple corrective surgeries however as she grew, her heart couldn’t keep up. She began experiencing frequent fainting spells, low energy, shortness of breath, and more. Eventually she was informed she needed a heart transplant. Luckily she received her new heart and had a positive experience – however this is extremely rare. Many individuals with Down syndrome are turned away when in need of transplants simply due to their disability. Charlotte makes an essential point that it’s never Down syndrome that holds somebody back, rather, it’s the discriminatory laws and societal constructs.

“Many people with Down syndrome in society aren’t considered to be candidates for an organ transplant, and that begs the question, whose lives are valuable?”

– Charlotte Woodward

Following her transplant, Charlotte became an advocate for organ transplant discrimination. Charlotte has spent the last nine years engaged with the National Down Syndrome Society working towards change. In February of 2020, Charlotte spoke in front of the state health committee, providing her story of a successful transplant and what she has engaged in since. The committee unanimously supported the legislation presented.

Since her transplant at age 22, Charlotte has been successful in all endeavors. Charlotte is a certified medical assistant, is employed at the National Down Syndrome Society (working as a strong advocate for her community), and is enrolled at George Mason University where she studies sociology with a concentration in social change and inequality. Charlotte is a force to be reckoned with and a beautiful example of how we cannot allow systems to only view us as one piece of what makes us who we are. Had Charlotte been denied her transplant for having Down syndrome she wouldn’t have these accomplishments and she wouldn’t have created this change in our world; solely because on a form she was labeled as disabled and unworthy. Charlotte shows us that our quality of life cannot be determined solely from one label.

“For thousands of Americans, getting the transplant they need is the difference between life and death”

– Katie Porter

In late December of 2020, Congresswoman Jamie Hererra Beutler and Katie Porter introduced legislation called the Charlotte Woodward Organ Transplant Discrimination Prevention Act to prevent organ transplant discrimination. This was named after Charlotte to highlight her profound impact on the change and development of (bi-partisan) federal legislation in order to allow all Americans with disabilities access to the gift of organ donation.

The bill prohibits doctors, hospitals, transplant centers, and other healthcare providers from denying access to organ transplants to someone because they have a disability. It requires providers to consider evaluating the likelihood of transplant success and provide the full range of supports available to help someone with a disability manage their aftercare. Finally, the bill fast tracks procedures that are overdue to those who may have endured transplant discrimination. The bill will be re-introduced to Congress this month to be (hopefully) signed into law.

“Charlotte Woodward is such a wonderful example of why it’s important to give everyone this gift of life”

– Rep. Herrera Beutler

Charlotte, for me, embodies this phrase – she is promoting the inherent value of individuals with disability and using her voice to ignite change.

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