Constructing a narrative … with supporting columns

When I was a sophomore in high school, my mom forwarded me an op-ed from The New York Times by writer Ben Mattlin. That piece, titled “A Disabled Life Is a Life Worth Living,” articulated his nuanced feelings about living with a disability and explained his thoughts on the recent deaths of two other members of the disabled community, which had saddened me and others who had heard about them.

While we do share a diagnosis, he resonated with me mainly because of the issues he brought up, such as his loathing of pity and his exhilaration at working through challenges to live a “normal” life. With a shock, I realized that this was the first time I had ever connected so intensely to any written work; nothing else I had read prior touched on those particular issues, and they were ones I had resigned myself to struggle with in isolation.

Clicking through The New York Times’ website, I came to find that Mattlin’s piece was part of a greater series consisting of op-eds by various figures who are part of the disabled community. The column covers topics ranging from finding love to developing self-acceptance, and its authors come from a variety of professions and have a variety of conditions. 

Each work in the column was a different piece to a narrative that I didn’t even know existed, one which embraced me and encapsulated a core part of my identity. Books such as Joseph Shapiro’s “No Pity” expanded on those personal stories to help me understand the social and political context of disability over time. That week, I read every piece in the column, and I continue to read new additions or go back to old works to this day.

Each one added more dimension to my disability, bringing to light components of my life that I didn’t realize were part of a shared experience. Although spinal muscular atrophy is a genetic disease, I’m the first person in my family to have it (as far as we know). Disability, as such, is different from most personal identities. Rather than being passed down from generation to generation, it can happen to anyone, even without a family history.

For me, that means that I have spent the majority of my life in complete ignorance of the history of this minority group that I am part of. No one in my family told me about the disabled community’s painful past or rich cultural identity because no one knew.

My encounter with that op-ed and the subsequent information binge I went on led me to social media groups full of disabled people with shared experiences who understood the things that my friends could only try so hard to relate to, and who often started discussions on issues that I hesitated to bring up in real life. Once I found this community that understood a part of me that most people didn’t, I finally felt a sense of ease and belonging.

I was 15 when I made these discoveries, and while I’m glad I did, I feel I should have gotten there so much sooner. Talking about disability is no longer taboo in our society, for which I’m very grateful. If you look at news headlines, opinion pieces or features, however, disability is very often tiptoed around or simply absent. Exposure to the disability narrative has the power to literally change lives, but it can only do so if the press is willing to tell these stories and give disabled people a platform to reach out to others who are as lonely as I once was.

That’s why I wrote this column. The disability narrative is so fragile — few media outlets contribute to our story consistently, and some even damage it with incomplete portrayals. As disabled people, we need to take control of our own narrative by contributing to it ourselves or by teaching others to handle it responsibly. That being said, the strength of such a body of work comes from its breadth rather than its unity. I write for myself, and I can’t speak for other disabled people with different life experiences, observations and opinions. I don’t agree with all other disabled writers, and I don’t expect them to agree with me.

Having a dedicated space for disability-related discussions, such as this column or the one hosted by The New York Times, has been a crucial element to starting a dialogue. But that’s not enough. We need to branch out; we need to incorporate disability into general coverage. After all, disabled humans are still humans, and the disabled narrative is a component of the human narrative that the press tries so hard to capture.

I came to The Daily Californian to do just that, and going forward, I hope to see a more diverse and intersectional perspective to reporting. As an amalgamation of so many different identities — Indian-American, introverted and disabled, among others — I am so grateful that this column has given me the opportunity to explore this facet of my life and to share my story with you.

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