Why It Took Me Years To Become A Proud Disabled Woman

I was 10 or 11 years old. My family had just wrapped up a group photo shoot, and a photography editor suggested blurring out my tracheostomy tube — a small, white device around my neck that helps me breathe.

“No way,” I nearly shouted at him.

I was only a child at the time, but I remember feeling a mix of anger, embarrassment and defiance. I hadn’t felt the need to hide my trach, but the photo editor’s request made me pause: Was I supposed to feel self-conscious about my disability? Should I blur it out after all?

Since birth, I have worn a tracheostomy tube (trach tube for short) around my neck to help me breathe due to vocal cord paralysis. When I was growing up, it was not uncommon for abled adults to tell me that I should wear colorful scarves so that other people wouldn’t see it. They would say, “You can’t even tell it’s there,” as if that’s a good thing. As if my disability is something to be ashamed of. As a kid, I never really thought about the politics of my disability the way I do now. It was just how I lived my life. It took me years before I stopped apologizing for breathing too loudly in a room and started reminding myself that I, too, deserve to take up space.

Now, I’m 26 years old, and I’m proud to call myself a disabled woman because I consider my disability to be a core part of who I am. I travel around the world to share my story as a disabled journalist and train other reporters on how to cover disability issues. I still recall the first time I gave a university lecture to a group of journalism students. I realized that I could use my platform to lift up my community and help create safe, accessible spaces where disabled people can be themselves and feel empowered to tell their own stories.

Unfortunately, disability is still viewed as an inherently negative identity that is meant to be overcome. The default narrative for people with disabilities is that we need to “make up” for what we lack. But for so many of us, this is how we live. This is who we are. And to imply otherwise — especially for people whose disabilities don’t have a cure — is to suggest we are less than, or that our worth is dependent on how healthy we are.

The reality is, we live in a world that was not made for disabled people. Even though we make up a quarter of the U.S. population  — and even though we have a rich history and a diverse community spanning thousands of different disabilities, health conditions and mental illnesses — we are still vastly underrepresented in media, entertainment, politics and the global workforce. But ableism goes beyond historical erasure and inaccessibility — it’s ingrained in the collective mindset of abled people.

For instance, inspiration porn is far too common in the news. Disability education programs are under constant threat of being defunded. And, for me, getting health care and accommodations are a constant battle — much more so than my actual disability. Accessibility and inclusion are not “gifts” or “favors” from abled people that the disability community should be grateful for. They are a basic human right. Disability must be part of every story, every policy, every conversation, every aspect of society — because it already is.

That’s why every time I speak on a panel, give a lecture or host a disability-related training, I make sure to call myself a “proud disabled woman.” I say it because when I was younger, I had never heard those two words — “proud” and “disabled” — in the same sentence before. I didn’t know disability pride even existed. And for many people, meeting me is often the first time they’ve heard someone talking candidly about disability, openly and unapologetically.

I am constantly moved by the people I’ve met in the disability community — educators, historians, writers, lawyers, activists and many more — because we share the same passion and sense of urgency for an accessible world. I look forward to living in a world where calling myself a “proud disabled woman” is not a radical notion. It’s time we go beyond disability representation and move toward a truly inclusive and equitable society where disability is celebrated. That time is now.