Local mom helps SB647 come to life as a disability rights advocate | Journal-news

MARTINSBURG — In Gov. Jim Justice’s handwriting, a copy of Senate Bill 647 read, “To Kendall, with all my love.”

Kendall’s mother, Samantha Showe, described her as a mini version of herself, a bubbly, bubbly little girl with a sassy twist.

“I tell you, she will move mountains. I just have to survive his attitude one day. I don’t know how I’m going to do it because she’s going to be 5 but she’s going to be 15 with her sass,” Showe laughed of her daughter.

Kendall is a 5 year old girl with Down syndrome.

This copy of SB647 came after three long years of work by Showe and other disability rights advocates across the state, including the Down Syndrome Network of West Virginia, the West Virginia Developmental Disabilities Council, the National Down Syndrome Society and other parent rights advocates, to provide equal organ transplant opportunities to those like Kendall and so many others. It prohibits discrimination against people with mental and physical disabilities who are on organ transplant lists.

The long process started from a viral post Showe saw years ago.

This post featured a Louisiana-based attorney who broached the topic of a proposed organ transplant non-discrimination bill, which sparked the idea that West Virginia could use similar legislation, giving people with mental and physical disabilities a fair chance to receive organ transplants.

“It sounds absolutely absurd,” Showe said. “Everyone would agree with you: why shouldn’t a disabled person be given a fair chance to get an organ transplant solely on the basis of their disability? But unfortunately it happens. This is why and how this journey began three years ago.

Showe pointed out that she had no background in politics, her degree being in a different field, but with the help of her family in the legal world and the support of many, she and the group of lawyers made it. work after three tries. .

“I’m just an Eastern Panhandle mom going, ‘When is enough enough? “, Showe said. “We worked as a team for three long years. Unfortunately the first two years we hit walls, but we knew what we had to do to get there this year.

As quick as Showe is to simply call herself a stay-at-home mom, she’s also quick to show her passion and knowledge by stressing the importance of legislation like SB647.

“Despite federal protection under the ADA, people with physical or mental disabilities have historically been denied vital organ transplants based on the assumption that their life is less than, that they are incapable receive proper post-transplant care or lack adequate support regarding necessary medical regimens that fall under receiving an organ transplant,” she said.

She went on to say that people who list for an organ transplant have already met the criteria to receive that organ, and this legislation ensures that anyone who lists for a transplant who may have a physical or mental disability is considered just another patient. This person cannot be denied an opportunity solely because of their disability.

The group of families and representatives who supported Senate Bill 647 pose with Gov. Jim Justice and Babydog after signing the bill March 21.

West Virginia is now the 32nd state to pass such legislation, and all bordering states except Kentucky have similar laws, Showe adding that they are working to get something passed in Kentucky.

“As my daughter thrives on being diagnosed with Down Syndrome, we have no idea what her future will look like,” she said. “I didn’t just do this for my family. I did it for you and for the entire disability community. It only takes one person to stand up and say, “Enough is enough.”

The senses. Starring are Patricia Rucker (R, Jefferson 16) and Charles Trump (R, Morgan 15), both from the Eastern Panhandle, for which Senator Amy Grant (R, Mason 4) served as main sponsor .

Showe reflected on the person she was when she started this journey years ago, how much she, Kendall and her family have grown.

“As a new mom and also a mom with special needs, you just learned about the pros and cons of having a child with a disability,” Showe said. “A benefit would be how much you learn and grow as a human being since you are now able to physically put yourself in a situation that you never imagined before. When you are part of the disability community, it is one of those situations if you know, you know. A downside would be how much the world still needs to develop, in terms of the actual human rights of people with disabilities.

“(Kendall) is the reason I am who I am today, and I’ve said it all the time: the person I was five years ago, before he was even born, is completely different from what I am now. When you have a child with a disability like that, your eyes open in different ways. They make you a better human being all around.

To make a special day for so many special people a more personal touch, Justice signed the bill on March 21, which is World Down Syndrome Day, and he took the time to meet each of the families who played a role in the bill. , signing a copy for each and giving them the pen with which he signed.

“He made it a more intimate ceremony,” Showe said. “I’m very grateful that the governor was willing to do something like this.”

She laughed adding, “Having Babydog there was the little icing on the cake.”

Showe plans to continue advocating for the legal rights of people with disabilities, saying she “looks forward to more opportunities as an unpaid lobbyist.” She hopes SB647’s journey will inspire others to fight for the bills they believe in.

“While you may feel like you’re just a mom or parent living in small town West Virginia, you can make a difference,” Showe said. “You are the voice. You are a voter. You need to be heard.

“I am proud to be a mother with Down syndrome; I am proud to be part of the disability community. I’m proud to be Kendall’s mother.

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