08/17/2026
6/6 “
I think the scariest thing that I face every day is the question of “Who is going to take care of me when I can't mentally or physically do that on my own? Who is going to be there for me?”
I try not to think about it too much because it makes me sad, but I think that's something a lot of disabled people worry about. We know how hard it is to find good, reliable caregivers, when we are capable, so it’s going to get harder as we age and lose more strength and ability to do so. But I trust the Lord will still provide my every need.
During my reign as Ms. Wheelchair Wisconsin, my platform was, Caring Is Caregiving. I advocated for people to become caregivers to combat the caregiving crisis, and I also educated disabled people on how to hire and manage a care team. I know my advocacy helped change hearts and minds, and people’s future care.
I've had more than 60 caregivers in my lifetime. I started managing my caregivers when I was 12. Imagine being a boss at 12! It was quite the challenge. Allowing strangers into my home to care for me in personal ways, knowing my every need and advocating that task and how to do it in the training process, and doing the same care routines every day for hours a day. It’s a repetitive challenge that you eventually become numb to and accept, because you need that care to continue living and therefore there is no end, until the end.
This has taught me resilience, patience, a high emotional capacity, awareness, intuition, top-notch advocacy skills, and communication. It has also grown my Faith and reliance on God. This all has made me into who I am today. Would I rather not go through all this? Yes. But then I know I’d be missing out on God’s ultimate good for me. I’d rather have that than my own expectations of what I think that good should be. There were also countless beautiful moments within the difficulty that would’ve otherwise been missed, that made it all matter.
I try and look at that time with another stranger, turned friend, as a space where I can impact their life for the better. Since I have so many care hours and see so many caregivers every week, I give in the ways I'm able to. Whether that’s a listening ear, a shoulder to cry on, or a place where a hug is always welcome, caregiving is never one sided. I like to say, my caregivers care for me physically, and I care for them mentally.
It's not an exchange of care. We both give what we can. It's not from a place of earning or proving, it's simply given unconditionally.
That's all people really want - love and acceptance. When you're disabled, you tend to not get a lot of that because there are so many barriers. Whether it's societal, environmental, communicational barriers, or negative assumptions and lack of representation, it all blocks us from getting that needed love and acceptance.
If we all just learned how to truly love one another God’s way, everyone's needs would be met. The way Jesus calls us to love and live is so radically different from what society says, but it's the truest way to live, be, and exist.”