31 Days of SMA: Representation Matters for Disabled People of Color

Photo courtesy of Sarbjot Kaur

Day 17 of 31

This is Sarbjot Kaur’s story:

Mehtab, whose name means moonlight, is our cheerful, adorable, and compassionate 4-year-old son. He loves playing with superheroes, dinosaurs, and Legos — his favorites are Black Panther, Batman, and T. rex. After numerous visits to specialists over an entire year, Mehtab was diagnosed last December with SMA type 3.

No matter its subtype, SMA is a cruel disease. No one is “lucky.” Each person with SMA has his or her own unique journey, on different boats but sailing the same rough sea. We can never forget the diagnosis call, because it changed our lives in so many ways that we never could have envisioned. We experienced a range of emotions, of hope and enervation. But since then, we have not let SMA rule our lives, nor will we.

After learning about the few available treatment options in Canada, we discovered the bureaucracy and disparity that exist in our healthcare system. There is a lack of equality in accessing SMA therapies such as Spinraza, Evrysdi, or Zolgensma. Each province (state) in Canada has its own eligibility criteria, based on type and age, which results in the inaccessibility of treatments for all patients. It’s hard enough to get an SMA diagnosis or live with one. It’s harder knowing treatments are out there and not being able to access them.

We have realized, on our journey, that there is a lack of representation of people of color living with SMA. Ignoring or not acknowledging their experiences means that society is complicit in discrimination. Appropriate and empowering representation of people of color with disabilities matters, to avoid marginalization within an already marginalized group.

We know the struggles that disabled people face in an ableist society. Now imagine being a disabled person of color, for whom those hardships are amplified. We need to acknowledge, understand, and share the stories of people of color with disabilities to have a powerful collective impact on society. Organizations should involve individuals from various races and ethnicities on boards and staff to better represent and serve the needs of all.

Mehtab’s journey can be followed on Instagram @araremoon.

SMA News Today’s 31 Days of SMA campaign will publish one story per day for SMA Awareness Month in August. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofSMA, or read the full series.