The Hidden Truth of Cerebral Palsy and Survival Mode

Cerebral palsy is a complex disability, and information about it often gets muddled and misunderstood. Much of the conversation about cerebral palsy comes from a nondisabled person’s perspective and narrative. But we rarely hear how people with cerebral palsy must live in constant survival mode, just trying to make it through the day or hour. And while operating in survival mode is a formidable challenge, the even bigger obstacles are the “overcoming disability” narrative, fatigue, pain and systematic and interpersonal ableism that surround cerebral palsy.

As someone with cerebral palsy, I wanted to share three truths in honor of National Cerebral Palsy Month.

People with cerebral palsy don’t “overcome” their disability

I grew up with the narrative of people overcoming cerebral palsy and other disabilities. The people in these stories do amazing things and follow their dreams. These stories gave me hope and made me feel less alone as a disabled child.

But these stories gloss over the truth, which is that these people often work to the bone to make their way in a world that isn’t interested in accommodating them. These types of stories are known as inspiration porn. According to Let’s Defeat Bullying, “Inspiration porn is nothing but a genre of media depictions where disabled people/people with disabilities are either portrayed as inspirational or objects of pity…Inspiration porn only gives us one side of the story and often hides the real problems they face.” Inspiration porn focuses on the accomplishments of the person with cerebral palsy and avoids discussing how much sacrifice it takes to reach these accomplishments. The National Institute of Neurological Disorders and Stroke states, “Fatigue is often a challenge because individuals with [cerebral palsy] may use up to three to five times the amount of energy that able-bodied people use when they walk and move.” Because people with cerebral palsy use so much energy, we are often in survival mode, just trying to make it through the day or the hour.

I don’t overcome my disability; I learn how to live with my disability. I have to work both with and against my cerebral palsy in my daily tasks, and while working toward my bigger goals. Cerebral palsy is my permanent, thousand-pound backpack, but it isn’t my biggest obstacle.

Our biggest obstacle isn’t cerebral palsy

I’ll be the first to say that cerebral palsy isn’t fun and games. I’m tired all the time; it takes “three to five times the amount of energy” to type and do my work as a ‘normal’ person and I’m in constant pain. I’m not alone in my experience with pain. According to American Academy for Cerebral Palsy and Developmental Medicine, “As many as 75% of adults with [cerebral palsy] suffer from chronic pain.” But all that is nothing compared to both systematic and interpersonal ableism I face daily.

The Center for Disability Rights states, “Ableism is a set of beliefs or practices that devalue and discriminate against people with physical, intellectual, or psychiatric disabilities and often rests on the assumption that disabled people need to be ‘fixed’ in one form or the other.” Ableism affects people with cerebral palsy in all aspects of our lives. In an article on the Canadian Broadcasting Company’s (CBC) website, Lionel Migrino writes about not being hired due to cerebral palsy; he states, “Saying they can't hire me because I have cerebral palsy really broke me because I can't change that about myself.” If we can’t get jobs to support ourselves because we’re disabled, we’re constantly fighting an upward battle where we are always in survival mode.

People with cerebral palsy deserve to do more than survive

According to the ADA National Network, “The [Americans with Disabilities Act] ADA is a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life, including jobs, schools, transportation, and all public and private places that are open to the general public. The purpose of the law is to make sure that people with disabilities have the same rights and opportunities as everyone else.” While the ADA has helped millions of disabled people, people with cerebral palsy and other disabilities still don’t have many basic rights, like financial independence.

Many people with cerebral palsy must use Supplemental Security Income (SSI) to support themselves and buy essential items. The Social Security Administration states, “We pay monthly benefits to people with limited income and resources who are blind, age 65 or older, or have a qualifying disability. Children with disabilities or who are blind may also get SSI.” Though SSI provides income, it also forces disabled people into poverty. According to the Social Security website, “[t]he limit for countable resources is $2,000 for an individual and $3,000 for a couple.” In other words, that means a single person can have no more than $2,000 in assets, which, according to the Social Security Administration, includes “cash, bank accounts, stocks, mutual funds, U.S. savings bonds, land, life insurance, personal property and vehicles.”

This leaves people with cerebral palsy with barely enough to save for a nice apartment, let alone a house or car. In 2023, Zillow states, “The median rent for all bedrooms and all property types in Minneapolis, MN is $1,500.” That means if a person with cerebral palsy lives alone in an apartment in Minneapolis, they wouldn’t have enough money to pay for the first month’s rent and security deposit. This limits independence and all but forces people with cerebral palsy to live with family or friends. It also gives us no money for traveling or purchasing common luxuries like new clothes, eating out and even sometimes, medical equipment. That’s right; needed medical equipment isn’t always covered. On the World Institute of Disability website, disability rights advocate and writer Hannah Soyer states, “Hearing aids, for example, are not on considered ‘medically necessary,’ and are therefore rarely covered by any insurance (although they are covered to an extent for children, in some states.) Some wheelchairs are covered, but usually only to an extent, and sometimes not at all depending on your needs.”

The mainstream narrative is that people with cerebral palsy must overcome their bodies to succeed and be happy. Not only is that narrative untrue, it’s problematic because it suggests we need to be fixed. But even if we do “overcome” our bodies, we still often face discriminatory practices in hiring and employment. Not to mention, we’re saddled with a social support system that doesn’t allow us to accrue a basic amount of wealth, so we can live above the poverty line. People with cerebral palsy shouldn’t have to overcome. We should be able to live in a world where we can enjoy our lives freely, without constantly being locked into survival mode.

For further reading, check out these resources:

The Moments I Feel Silenced as a Person with Cerebral Palsy

KEEPING IT REAL: Sonya's Story, Part I

The High Cost of Disability: The Inaccessibility of the Cost of Access