Kayla's Corner - It's Time to Advocate!
Happy New Year everyone! With a new year comes a new shift in schedule for me. Soon, I will be spending more time at the Capitol and in legislative meetings when the legislative session begins. The legislative session is a 40-day non-consecutive work period where senators and representatives make laws. So, I will be only be in the GCDD office during my usual hours Tuesday and Thursday. I am nervous about my new busy schedule but because GCDD will support me no matter what, I now know that I will succeed. Also, I’m not the only one to have done this before, which makes me feel a lot better.
Of course, at GCDD, a new year also comes the start of Advocacy Days. These are 5 days hosted by GCDD over the course of January, February, and March where advocates for people with disabilities go to the Georgia State Capitol in Atlanta and advocate for certain issues and laws. The first Advocacy Day is January 29th and it will cover Gracie’s Law.
Gracie’s Law is a law that prevents people with disabilities from being denied or refused an organ transplant based solely on their disability, which is discrimination. The Rehabilitation Act of 1973 and The American Disabilities Act of 1990 technically prohibit organ transplant discrimination for people with disabilities, but they don’t explicitly say it’s illegal to refuse to make someone transplant eligible. Because of this, people with disabilities in many states across the country have been refused a life-saving organ transplant simply because of their disability and the misconceptions the referring physicians may have about their disability. Therefore, organ transplant discrimination laws have been created to prevent this from happening, but only 12 states have laws in place; and, except for California, all of them were created after 2013. As we have 50 states in America, we have a long way to go and much work to do.
Gracie’s Law is the organ transplant discrimination law for Georgia, and it is named after Gracie Joy Nobles, a young girl with Down syndrome and a heart condition. While she does not currently need a heart transplant, she might one day and she might be denied because of her Down Syndrome. So, because of this and because of the kindness of their hearts, her parents decided to help create a law so her daughter and other people with disabilities in Georgia won’t be discriminated against and denied an organ transplant if they need it because of their disability.
This law is important to me and should be important to you because you can be denied an organ transplant if you have any type of disability including autism. Now, as you know, I am autistic, and before Pennsylvania had its own organ transplant discrimination law, Paul Corby was denied a heart transplant due to his autism. Because of this, Paul and his mother advocated for the law in Pennsylvania which got passed in 2018. However, that can still happen here and I’m a type 1 diabetic so if my health gets so bad that I need a pancreas transplant, I might not get one simply because I’m autistic. That’s why Gracie’s Law must get passed so that I and every other person with a disability in the state of Georgia are guaranteed a life-saving organ transplant no matter what. Join me on January 29th at 8 am at Georgia State Capitol to make sure that happens. Register on EventBrite for the 2020 Advocacy Days!