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Caregiver Champion: Ginny Painter

_CARE / Caregiver Champion

My name is Ginny Painter, I am 26 years old, and I design apparel. My brother David is 31 years old and was born with Coffin-Lowry Syndrome—a rare genetic disorder characterized by intellectual disability, delayed development, and skeletal abnormalities. He is in a wheelchair and requires a caregiver for most daily tasks. Caring for David fueled my passion for design. I noticed a major gap in the market for fashionable yet adaptive clothing that would bring ease in dressing those with disabilities.

How would you describe “care sister-ing”?

It’s a labor of love. Everyone in our family is happy to help out. It’s a balancing act of providing the necessary assistance while still giving him as much autonomy as possible. Some aspects of caregiving can be very difficult - dressing, feeding, lifting, transferring, etc. Due to David’s low muscle tone and limited mobility, daily tasks can be challenging for him to accomplish even with the help of a parent or sibling. My favorite thing to do with David is take him shopping. Taking him anywhere requires multiple transfers, finding accessible parking, navigating stores that aren’t quite ADA accessible, finding elevators, helping him eat his lunch, among other things. Just opening doors and trying to balance one door with my foot while trying to roll him through it can be a struggle. One of the biggest challenges I run into is taking him to the restroom. I usually have to take him into the women’s room with me and I feel like that compromises his dignity and can be awkward. In the absence of privacy, dignity becomes more important. It would be nice to see more family/accessible restrooms in public spaces.

Though caregiving has its challenges, it also puts into perspective things I typically take for granted. I have the freedom to do what I want when I want to do it, but for David, it’s not that easy. He has to ask and wait for someone to be available to take him to do anything. It makes me happy to take him because I enjoy the freedom of going out and doing things and I want that reality for him, too.

“As I began to take a larger role in his care, he started to see me more as a peer or big sister—someone he depends on.”

How has it changed over time? From both your perspective and David’s?

When I was little, I had an immature understanding of the concept of fairness. One thing my mom said that stuck with me is that “fairness is what it takes to be on the same level playing field. Giving people who need more, more.” David needs more than me and as the baby sister, I got very jealous of the extra attention he received. I got to the age where I started to watch him when my parents were gone and that meant a larger role in caregiving. I began to see it as a matter of what’s just and right, not so much what’s ‘fair.’ A higher level of care is required to get him to the same playing field.

I think over the years David’s perspective has changed as well. He once saw me and treated me as a little sister, but the dynamic has shifted. As I began to take a larger role in his care, he started to see me more as a peer or big sister, someone he depends on.

What’s the best part of your day? Share one thing you are grateful for or a lesson you have learned.

I currently live in Connecticut and David lives with my parents in Georgia. I think the best part of my day is when we talk on FaceTime. When he hears the ring of the FaceTime call, he recognizes it and knows it’s me without even hearing my voice or seeing the screen. I like to check in with him and ask him about his day. He usually talks about his speech therapy appointment or when his next haircut will be. I love seeing what he wears every day because 9 times out of 10 it’s something I’ve designed. He truly is my biggest fan when it comes to his wardrobe!

Video by @ginny_painter on TikTok

One thing I am grateful for is being able to share my life with him. If I am sad or lonely, he is always there to tell me a joke or cheer me up. He has a magical way of just turning my mood around completely. Even when he is grumpy, we still somehow find ourselves laughing. David has taught me some profound lessons and perspectives on life. When I was 17, I faced some serious health challenges myself and was in and out of hospitals for several years. David would visit me as often as possible. He was always there to cheer me up, joke around and make me laugh. I began to use humor as a way to cope and it gave me the strength to push on. I knew he understood what it was like to be sick and in the hospital and that was something we could relate on. He understood more about what I was going through than a lot of my peers did.

What’s your biggest fear?

This is a tough question for me. I really hate thinking or talking about it, but my biggest fear is the thought of having to see David pass before I do. I try not to think about it, but the thought is always in the back of my mind. It comes with the territory. I think a lot of people fear having to see someone they love pass before them.

What goes along with that is the thought of what life would be like without him. It’s something I can’t even begin to imagine. How will I cope? All I’ve known is a life with him in it. He lights up any room he rolls into and is so full of joy and happiness. I just try to live life in the moment and not dwell on the ‘what ifs?’

Your favorite memory together so far?

One time I took David to go shopping and get lunch. We were on the way home and thought it would be funny to prank our parents by pretending to get David a tattoo. He had talked about wanting to get a tattoo since he was in high school, but my parents always shut the idea down. We went to a local tattoo shop and explained the prank to one of the artists. He jumped right on board. David told him he wanted the word ‘dude’ tattooed on his arm. The artist got right to work drawing up a stencil for David and put the temporary tattoo on.

He even showed David the studio and all the tattoo guns, which David thought was awesome. We got home and everyone thought it was a pretty funny prank, but it started the conversation of why not? Why can’t he get a tattoo? David gets to make so few choices in his life—let him make this one. My mom contacted a tattoo artist at the shop we had gone to and spoke to him about what it would take to get David a tattoo. He had to get a signed document from his doctor saying that he was able to give informed consent. (This was funny to get from his conservative Christian doctor.) With his paperwork in hand, David rolled into the shop with images of Johnny Cash’s ‘63 Gibson guitar which he had selected to go on his forearm. He watched the artist do the entire tattoo without flinching or complaining. He was so enamored by the process and happy with the result. He is so proud of it to this day and I think he likes shocking people when he rolls his sleeve up.

If you had a magic wand, what is one thing you wish people understood about your family’s journey?

Our journey hasn’t been a sad thing. When we tell people about his disability, their natural response is, “I’m so sorry.” We’ve made peace with the fact that our life may look different but that doesn’t mean it’s sad. He has brought so much joy to not only our lives but also everyone that comes in contact with him. Selfishly, I think I have a way better life than most because I get to be his sister.

Follow David on Instagram @sharpdresseddave. David was also featured on Special Books by Special Kids. Check it out here.

Please share your adventures with us at share@juniperunltd.com
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