Reach for the STARS! Why Media Representation Matters

Recently, I had the privilege of attending Portland Pride. The weekend was jam-packed with all sorts of events and parties celebrating the beautiful and diverse LGBTQIA+ community. As a queer person, it was a wonderful experience. As a queer person with a rare disease, the experience was extra special! Why?

One of the headliners for the Pride celebration concert was a famous performer with my very same rare disease! Jinkx Monsoon is a talented drag show artist with narcolepsy. She has won RuPaul's Drag Race not once, but twice! I was ecstatic when I found out she would be performing at Pride!

Media representation of my rare disease is nonexistent

As a person with narcolepsy, media representation of my rare disease is… well… rare. And accurate media representation of narcolepsy – well, that's practically nonexistent.

Watching someone perform with the very same rare disease that I have was so powerful. I felt like I was seeing queerness and narcolepsy being celebrated as I watched her perform. The whole set showcased rare disease representation at its finest!

A STAR with narcolepsy! A STAR with a rare disease! How wonderful! How exciting!

Why does media representation matter?

Media representation of people with rare diseases can have a significant impact on society's perception of disability and chronic illness. When we center people with disabilities in the media, we challenge society's stereotypes. When we show disabled people in diverse roles and showcase their excellence, we can create positive change.

Reshaping society's perceptions

It is a common stereotype that disability or rare disease is only defined by limitations or tragedy. When we showcase stars with rare diseases, we help reshape societal perceptions. This results in a more accurate and nuanced understanding of disability. It reminds society that we are people, not problems to be solved.

Cultivating more empathy

More so, when society sees people with rare diseases represented in media, this promotes empathy and understanding. When we humanize disabled characters and share their stories, society can relate to and connect with disabled individuals on a deeper level. This can lead to increased understanding, compassion, and a reduction in stigmas related to disability and rare disease.

Creating more inclusive environments

Media representation highlights the importance of inclusion and accessibility in society. By featuring disabled individuals in various settings, such as workplaces, schools, communities, and social events, media can raise awareness about the barriers and challenges we face. This promotes discussions and actions geared towards creating more inclusive environments and accommodating the needs of disabled individuals.

Prioritizing accessibility for all

I couldn't help but notice that the sign language interpreters were so helpful during Jinx Monsoon's performance, and Jinx even thanked them for their work a few times. As a hard-of-hearing person, I found the event accessible AND empowering.

When we center people with disabilities in positions of power and stardom, it provides an opportunity for their empathy toward disability to be utilized for good. That is, I got the sense that people with disabilities are more likely to prioritize access for all people — not just for their "own."

Media representation is empowering

Empowering people with rare diseases and disabilities is important. Media representation can empower disabled individuals by providing positive role models and showcasing their strengths, talents, and achievements.

Seeing disabled characters succeed, pursue their passions, and overcome obstacles can inspire and motivate others with disabilities to pursue their own goals and aspirations. This is how I felt while watching a fellow person with narcolepsy perform and be celebrated for their differences.

Making positive change

Finally, media representation serves as a platform for advocacy and policy change. By highlighting the experiences and issues faced by disabled individuals, media raises awareness, sparks conversations, and ultimately drives societal and policy changes. These policy changes focus on more inclusive and equitable practices.

Media representation of rare diseases can play a vital role in shaping societal perceptions. But it also inspires others with rare diseases. Rare disease representation challenges stereotypes, promotes empathy and understanding, advocates for inclusion and accessibility, empowers disabled individuals, and ultimately drives positive social change.

Reach for the STARS, my fellow rare disease friends!

Do you know of anyone in the media who shares your rare disease? How does it make you feel to have this representation? (Or not?) Tell us more in the comments below.