Moving Beyond Shame in My Life With Cerebral Palsy

Brené Brown says, “I define shame as the intensely painful feeling or experience of believing that we are flawed and therefore unworthy of love and belonging — something we’ve experienced, done, or failed to do makes us unworthy of connection.”

It’s a feeling I know all too well as a disabled person. I can’t pinpoint my first awareness of shame, but I do have some moments that stand out in my memory. They stand out so strongly that when something or someone reminds me of the experience my stomach drops, my heart races and I have to fight through nausea and remind myself to breathe.

Even now as I think about these moments I want to stop typing, because I don’t know if I have the words. I realize how these moments are intertwined with the things that matter most to me. The things in my life I’m the proudest of and choose to define as my successes have a corresponding moment of deep shame and disconnection.

The first happened on an elementary school playground. A place that should be for joy and innocence became a battlefield where the open blacktop made me feel exposed and raw with nowhere to hide and no shelter.

I don’t have any memory of that morning at school. I don’t know if I was cranky and unkind because I was in pain and frustrated as I recovered from orthopedic surgery that had gone badly and left me feeling like all the hard work in therapy was for nothing, or if I was having a good day enjoying whatever book I was reading and hoping to have outdoor recess. I’m under no illusions that I was innocent in the way some classmates treated me. I didn’t make it easy because of those bad days, and I went from zero to 60 in a heartbeat with my reactions making me an entertaining target to tease.

But whatever the catalyst that day, I went out on the playground that day to have the entire fifth-grade class bark at me like dogs. Somewhere in my mind, I knew that one of my neighbors who’d I’d played with since I moved in at two had probably said something about my hating the connection between the character in the Garfield comic and my last name. (My last name was Ode, but was often mispronounced as Odie.) It meant someone I considered a best friend had betrayed me. The tears were hot and immediate. I tried to hold them back, and wanted the ground to swallow me. I couldn’t cover my face because I was on my crutches, so I dropped to my knees and hid. I can still hear then laughing and barking.

I spent the rest of the school year eating lunch in the bathroom, and when I couldn’t avoid recess completely, I kept a book with me so I could try to ignore the fact that I didn’t have anyone to play with.

The next year I started middle school. It was a chance to meet new people and make new friends. There was a new girl who was quietly crying in the back of Spanish class, and I sat down to talk to her because I knew that feeling and how much just one person reaching out to me would have meant.

Over 25 years later, that girl is still my best friend. We may live on opposite sides of the country and rarely get to see each other, but she reminds me I’m never alone. She makes me laugh and listens to my fears. She loves my kids and my husband jokes he knows he’s not my favorite. I learned to value deep true friendship and seek real connections and to ignore superficial popularity. My friends are amazing. They enrich my life in a million ways and I’d never change what led me to where I am today.

The second shame moment was in college. I was an anxious undergrad who was assigned a complex client in the university clinic. I was madly in love with the idea of being a speech pathologist. I understood the impact of a good therapist and wanted to make a difference. I tried to be creative and fun with my client and felt I was doing well. Then I had a conference with my supervisor who told me I wasn’t meeting expectations. She mentioned I lacked independence because I needed help carrying therapy materials, and said the fact I couldn’t lift the child hurt our connection. The criticism wasn’t about my skills as a therapist but rather about my limitations because of cerebral palsy. Something I couldn’t change and knew no studying would make better.

I held it together as the meeting ended and remember my voice shaking as I called my mom and told her I felt really disabled for the first time in ages. It made me feel looming doubts about my chosen life path. I didn’t sleep for days. I felt like I’d failed before I’d started.

My sister yelled at me. She told me I was better than my reaction of giving up. She told me to show the supervisor she was wrong. I ended up meeting with the dean; he was horrified, and after many meetings and emails, my grade was changed. In fact, with the dean’s encouragement, I studied abroad in his home of New Zealand and gained more knowledge and experiences that were phenomenal and changed my life. It taught me how pervasive ableism is and that there’s value in speaking up. It also taught me that I have people on my side if I’m willing to ask for help.

The third defining shame moment came with what should have been the happiest day of my life. My daughter’s birth was physically demanding, after an even more difficult pregnancy. There was a nurse who clearly had doubts about my ability to parent. And when the third social worker visited to ask me questions about my support and family I began to doubt everything. I wondered if I was an awful person for having a baby who would now suffer her entire life because of what her mama couldn’t do. The shame was all-encompassing, and took months and work through and deal with. I leaned hard on my amazing network of friends and family. I remembered to believe in myself again. And I saw each day that she was just fine. She was so loved, and she was amazing.

I now have two amazing babies, children who I hope never feel shame about their mama and what she can and can’t do. Children I have no doubt will change the world. Maybe they can learn from my moments. Learn the value of friendship, of believing in yourself, and of love. I think it’s more likely they’ll need to have their own moments of disconnection, but I’ll be there to help them reconnect with who they are and the love they need.

There will always be shame, some earned and some not, but we’re all worthy of connection and love.