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Seven Things I Look for in a PCA
Living Independently: The PCA Journey — Part Four Our Beautiful Challenges — Marie W.O.W.C.P. Having a PCA is about much more than having someone come into my home and help me with certain tasks. This person becomes part of my everyday life. They may see me when I’m having a great day and when I’m struggling. They may help me with personal things that I wouldn’t trust just anyone to help me…
Building Trust With My PCA
Living Independently: The PCA Journey — Part Five Our Beautiful Challenges — Marie W.O.W.C.P. Trusting a PCA can almost be like trusting a partner. That might sound like an unusual comparison, but when you think about how involved a PCA can become in your everyday life, it makes sense. Depending on what kind of assistance you need, a PCA may be in your home, help prepare your meals, take you…
The Challenge of Being My Own Boss
Living Independently: The PCA Journey — Part Three Our Beautiful Challenges — Marie W.O.W.C.P. Being part of a PCA Waiver program has given me something incredibly important: choice. I have the ability to choose the people who help me and have a say in how that help is provided. That freedom is a huge part of my independence. But there’s another side of being in a self-directed PCA program…
The Benefits of Having a PCA- and the Benefits of Learning Without One
Living Independently: The PCA Journey — Part Two Our Beautiful Challenges — Marie W.O.W.C.P. When I first started living on my own, it was at the very beginning of the COVID-19 pandemic. Moving into my own apartment was already a huge step in my independence journey. But moving out during a pandemic made that experience very different from what I had imagined. The world had shut down. People…
What a PCA Really Means
A PCA SERIES Living Independently: The PCA Journey — Part One Our Beautiful Challenges — Marie W.O.W.C.P. When people hear the words Personal Care Assistant, or PCA, they may assume that having one means a person with a disability cannot be independent. For me, it means almost the exact opposite. Having a PCA doesn’t mean I’m not independent. My PCA is one of the tools that helps me live the…
The Doors That Opened When I Chose to Believe
Closing Disability Pride Month As Disability Pride Month comes to an end, I’ve found myself reflecting on the journey that brought me here. This month, I’ve written about disability history. I’ve reflected on the meaning of the Disability Pride Flag. I’ve shared stories about growing up with cerebral palsy, the barriers I’ve faced, and the lessons I’ve learned along the way. But if there is…
Meeting Disability at Different Doors
Our Beautiful Challenges — Marie Disability Pride series One of the greatest lessons I’ve learned is that not everyone meets disability at the same door. Some of us are born with a disability. Some acquire one through an illness, an accident, or simply through the aging process. No matter how we arrive, we all become part of the same community. I was born with cerebral palsy. I don’t know…
The Love I Never Expected
Disability Pride Seres Our Beautiful Challenges — Marie When people think about disability, they often think about doctors, therapy, accessibility, or advocacy. What they don’t always think about is love. Yet love is something every person hopes to experience. For many years, I wasn’t sure what my future would look like. I wondered if someone would ever see me for who I was instead of…
Disability Is Not One Story
Disability Pride Series Our Beautiful Challenges — Marie One of the biggest misconceptions about disability is that people think there is only one disability experience. There isn’t. Every disability is different. Every person is different. Some people are born with disabilities. Others become disabled through illness, injury, or aging. Some disabilities are visible. Others are…
The Author of Me
Disability Pride Series Our Beautiful Challenges — Marie Every person has a story. The question is: who is holding the pen? For many years, I allowed fear, doubt, and other people’s opinions to write chapters of my life. Sometimes I believed the limits others placed on me. Sometimes I questioned my own dreams. Sometimes I forgot that my story belonged to me. Living with cerebral palsy has…
I Wasn't Meant to Be Fixed
Disability Pride Series Our Beautiful Challenges — Marie For much of my life, I believed my disability was something that needed to be fixed. Not because my parents ever made me feel that way. Not because the people who loved me believed I was broken. But because the world often acted as if I would only belong if I became more like everyone else. Growing up, I spent years in physical…
They See What's Different-Not What's Possible
Disability Pride series Our Beautiful Challenges — Marie There have been so many moments in my life when people noticed my disability before they noticed me. They saw my walker before they saw my smile. They noticed my cerebral palsy before they noticed my personality. Sometimes they made up their minds about what I could or couldn’t do before I ever had the chance to introduce myself. For…
The ADA Changed the Law—Not Every Mind Our Beautiful Challenges — Marie When the Americans with…
Accessibility Is Not One Size Fit All
Disability Pride Series Our Beautiful Challenges — Marie One of the biggest lessons I’ve learned about disability is that accessibility is not one size fits all. For years, people with disabilities have fought for equal access. The ADA changed our country in incredible ways, making schools, businesses, transportation, and housing more accessible than ever before. But accessibility is still…
Seeing Disability Through My Eyes
Disability Pride Series Our Beautiful Challenges — Marie When people look at me today, they see someone who is proud to talk about disability. They see an advocate. A writer. Someone who speaks openly about living with cerebral palsy. But it wasn’t always that way. For years, I was afraid of being associated with the disability community. Not because I was ashamed of other people with…
The Ugly Laws: The History Many People Never Learned
Disability Pride Month Series Our Beautiful Challenges — Marie One of the reasons I wanted to create a Disability Pride Month series was because I realized that many people—even people within the disability community—don’t know some of the history that shaped our lives today. I know I didn’t. Not long ago, I learned about something called the Ugly Laws, and I couldn’t stop thinking about…
What is the Disability Pride Flag Mean to Me
Disability Pride Month Series — Marie W.O.W.C.P. When I look at the Disability Pride Flag, I do not just see colors. I see stories. I see people. I see history. And I see pride. For many years, I struggled with what disability meant in my own life. Not because I hated who I was. But because I was afraid of being seen differently. I worried that people would see my cerebral palsy before…