People with cerebral palsy face challenges beyond their physical disabilities, according to one study: inadequate services, limited resources and poor understanding of the group of disorders by health care professionals.Anna Liminowicz/The Globe and Mail
Tara Copeland is an associate producer with CBC Kamloops Radio.
I know women who have received ADHD or autism diagnoses later in life. They talk about how things make so much more sense afterward – that they even find peace.
I long for that. I too received a surprise diagnosis later in life: cerebral palsy. And since then, my life has made more sense.
But I haven’t found peace. I feel rage.
Unlike ADHD or autism, my condition was quite visible – you could see it in the way I walked. So how did I not know? Because my family doctor withheld my diagnosis from me, for 37 years.
When I was 5, a neurologist diagnosed me with cerebral palsy, a classification of brain damage that happens close to or during birth that can result in a group of disorders that affect a person’s ability to move and maintain balance. There are five main types of cerebral palsy, and it turns out I have a mild case of the most common type: spastic cerebral palsy, a condition that results in muscle tightness and awkward movements. My muscle tightness can affect my walking, and my running when I’m nervous; my “awkward gait” is what made my kindergarten teacher notice that something might be wrong.
All in all, I have it good compared to many. Sure, I can’t play guitar in front of large groups of people, but after two recent rounds of a drug, it no longer affects my vision at nighttime. I don’t have difficulty speaking or chronic pain, which others suffer with.
But I only learned about my diagnosis three years ago. In January, 2020, I got extremely sick with COVID-19, which left me with several lingering, random health issues even after I got better, including excruciating pain in my right hip. I went to different doctors, and they couldn’t figure it out. Finally, in 2023, a physiotherapist implored me to make a formal request for my medical records.
That’s when I learned that, 37 years ago, my then-doctor read the neurologist’s report and told my parents that I just had a case of “short tendons.” And even when several ailments kept me going back to the doctor – for instance, frequent bronchitis, which is a direct symptom of cerebral palsy – he continued to lie to me. He blamed most of my medical problems on my being “high-strung.” He suggested it was “in my head.”
“Why are you so angry?” my mother used to ask, when I was younger. I used to feel completely broken every time she questioned my big feelings, because I could never explain where the rage was coming from. But since I’ve gained awareness of my diagnosis, I can find the words for the first time.
I’m full of rage about everything I’ve been denied.
Since I’ve become aware of my diagnosis, I’ve had women reach out to me from a place of caring. Many have suggested that I’m just another example of the health care system failing women. And women do face disparities in health care: A study published in 2022 by Harvard Medical School found that as of 2019, women only made up about 40 per cent of participants in clinical trials for cancer, cardiovascular disease and psychiatric disorders, though women make up approximately 51 per cent of the U.S. population. In Canada, data from the McKinsey Health Institute shows women spend nearly 24 per cent more time in poor health – with varying degrees of disability – compared to men. According to Deloitte and the IWK Foundation, only 7 per cent of health research is focused on women, and our national women’s health strategy has not been updated since 1999.
But I don’t believe I’m an example of our health care system failing women. I’m an example of how it fails our disabled community.
There’s an unspoken caste system in both society and our health care system: It’s broken down by gender, race, sexual orientation – and then, at the very bottom, we have people living with disabilities. According to a 2024 Irish study published in Developmental Medicine & Child Neurology, adults with cerebral palsy faced multiple challenges accessing the health services they needed, including inadequate services, limited resources and poor understanding of the group of disorders by health care professionals.
We learned about the Second World War in school, but my history class never covered Aktion T4 – the Nazis’ mass-murder program that killed at least 275,000 people with disabilities and mental illness – which was sold as “euthanasia”. The program records did not break down the specific number of victims who had cerebral palsy, but those with psychiatric, neurological, or physical disabilities – deemed to be “life unworthy of life” – were “eligible” for the program.
For centuries, people with cerebral palsy have been institutionalized, shoved in attics and discouraged from participating in society. From 1867 to the 1970s, several U.S. cities had what would later be called “Ugly Laws” – regulations that, according to the Encyclopedia of Disability, made it illegal for “any person, who is diseased, maimed, mutilated or deformed in any way, so as to be an unsightly or disgusting object, to expose himself or herself to public view.”
So if I had to speculate, I believe my doctor lied because he thought I’d have a better life if I didn’t know the truth.
Keep in mind, my initial diagnosis came in 1987. The Canadian Disability Tax Credit wasn’t created until 1988. My doctor probably didn’t even have a clue that his diagnosis could have eventually allowed my lower-income family to access a tax benefit that, on its own, could have provided more than $100,000 of relief.
But money is just one piece of the cost of this false diagnosis.
He prescribed me higher-risk medications that were never going to work – because they targeted different problems – so I now have life-altering allergies. Because my wonderful mother couldn’t have a full understanding of what I was going through, he robbed her of the chance to be a truly perfect mother. I was robbed of an educational environment that could have provided me grace and space around my cerebral palsy, instead of being a place that effectively turned a blind eye to the terrible bullying I received.
Worst of all, my doctor robbed me of one of the most precious resources we have: time. I feel that I have lost out on decades of my life, because those were decades where I didn’t have access to appropriate physiotherapy – and decades where I couldn’t start to accept my cerebral palsy. I can’t quantify that into a monetary sum.
Maybe my doctor thought his lies would spare me from discrimination or poor job prospects. I can’t know for sure; I filed a complaint with the B.C. College of Physicians about my since-retired doctor, who denied everything, and the College ruled that they would put a note in his file if he should choose to practise again. But if he truly held that patronizing belief, then he was living in cloud cuckoo-land.
In 2007, I was offered an anchoring job in TV news, with a major network in a tiny community. I turned it down. I made many excuses – the pay was poor, I didn’t think my relationship with my then-boyfriend would survive such a move – but I never shared my biggest reason with anyone: I’d never met the woman hiring for the position, so I was afraid that she would change her mind if she saw my walk.
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I knew this was in the realm of possibilities, because it happened to me when I applied for a practicum at a local television station in 2006. The person in charge of hiring saw my demo, liked what she saw, and asked to meet with me in person. So, I walked into her office – and that appeared to be the problem. “Sorry, we decided to go with a man for this position,” she said – but we both knew what she really meant.
So I feel rage. Rage that I was denied informed consent on many significant, life-altering decisions; rage that I’ll never know how far I could have gone. But these are the costs of living a lie: whether it’s one you choose, or one that’s imposed on you. No matter how hard I work, I can’t gain back lost time, or win those losses back.
Instead, I focus on my war cry: Good can come from truth. Maybe that still comes from a place of rage – but at least it’s a rage in pursuit of something better.