A wild cure chase

Along for the Ride

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It happened again.

I was just minding my own business, listening to the latest episode of “Freakonomics Radio” on my way to class, when an elderly lady stopped me with a loud, “I am so sorry!”

Without any explanation, she launched into an anecdote about an acquaintance of hers who had healed completely after getting into a devastating car accident. I only half-listened as I scrambled for a delicate way to extract myself from the situation and make it to my discussion on time. After a few minutes, I came up with an excuse and worked up the courage to slip away. But then, she said something that made my blood freeze.

“Joining my church is what got him through. Jesus has healing powers — he can fix anything that’s broken.” She paused. “You should come to one of our sermons some time. It’ll help.”

Now, I think it’s wonderful that some people are able to recover fully from grave injuries. I also appreciate the intense passion and faith of those who, unlike me, believe in a God, and I admire their eagerness to share love and kindness with the world.

But I absolutely cannot sit idly by when someone implies that I need to be fixed.

I gave the lady a tight-lipped smile. “That’s wonderful, but there’s nothing broken about me.”

This is not the first time someone has tried to tell me that their religion will fix my body, and it won’t be the last time I’ll have to respond the way I did. Our society is so obsessed with finding a cure, but its attempts to do so are drastically misguided and, in my opinion, misunderstand the source of the problem. A variety of paradigms have influenced the way people and societies think about disability, particularly the religious, medical and social models of disability.

The religious model of disability is a premodern paradigm that views disability as an act of God, usually a punishment for some sin committed by the disabled individual or their family. In that sense, disability is punitive and tragic in nature.

This model frames disability as something to be ashamed of and insinuates that disabled people or their families are guilty of some unknown action that caused their impairment. But that mentality only serves to stigmatize disability, and the claim that praying heals disability is based on purely anecdotal evidence.

Modern medicine is equally at fault for the stigmatization of disability, although its approach is slightly different. The medical model of disability, developed in conjunction with scientific advancements in the mid-1800s, views disability as a defect in the disabled body, which is considered a biological anomaly. The solution, therefore, is to medicate and rehabilitate.

I take issue with this model for a couple of reasons. First, it places the burden of cure on disabled people to adapt to the world around them and assumes that they want to be different — they are treated as patients whose only goal is to “get better” rather than as normal people with normal goals and aspirations. Second, the medical model is founded on the assumption that all disabilities can be cured through medicine, which is obviously not the case at this point in time.

One well-known orphan drug — a name given to medication created to treat extremely rare diseases — is Spinraza, a medicine intended to treat spinal muscular atrophy, or SMA. I’ve been on this for almost two years. Under the medical model, combining such a drug with regular physical therapy should be enough to “cure” the disease, but that is simply not the case. While many people with SMA have seen their abilities increase under Spinraza and the new gene therapy Zolgensma, most of them still have physical impairments that are not expected to go away over time. Personally, I have observed little to no improvement while on the drug.

Relying on medical advancements alone to “cure” disability is foolish because no two people are going to have the same exact improvement while taking a new drug or under therapy. Instead, we must recognize that the sources of disability may lie beyond the individual.

The social model of disability developed in the 1960s, at the beginning of the disability rights movement in the United States. It views disability as a social phenomenon that exists because society is unaccommodating of all its members. Under this model, the impairments of disabled people are a natural part of human diversity, along with height, gender, skin color, sexual orientation and every other characteristic. The problem, and therefore the solution, doesn’t exist in the individual themselves, but rather in the society as a whole.

I believe this to be the most versatile way of thinking about disability, since cures may encompass anything that society is capable of fixing within itself and are effective regardless of the specific impairment. While I have been subjected to numerous surgeries, procedures and exercise routines, the most liberating solutions have been ramps, elevators, adapted public transit and other measures that affect how the world adjusts to me rather than how I adjust to the world.

Modern society is on a wild goose chase for a “cure” that doesn’t exist. By framing the antidote to disability as a miracle infusion or therapy, we are missing out on broader, less flashy solutions that help far more people and cost far less. Disabled bodies are not broken — they’re disabled by the world around them. Investing our resources into fixing everyday obstacles rather than fixing people will create a more equitable society for all.

Vyoma Raman writes the Monday column on how mobility disabilities affect college life. Contact her at [email protected].