Author Archives: Hawken Miller

Why I Don’t View Myself as Disabled

We form our identity from the world around us. That includes factors like our relationships with parents, siblings, and friends, what we look like, our sexual orientation, and our religious beliefs, among others. For me, one unspoken taboo is my disability. I use a wheelchair because I can barely walk,…

When You Live With Duchenne, Healthy Choices Are Vital

Sir Isaac Newton’s third law of motion states that for every action on an object there is an equal and opposite reaction. In 1686, his law was groundbreaking, but in 2021, we take its simplicity for granted. There is a consequence for every action taken. When a bullet discharges…

What I’ve Learned From Finding a Caregiver

As my Duchenne muscular dystrophy has progressed, it’s become untenable for me to live on my own without outside help. We’ve begun seeking professional caregiving assistance while my parents are away on vacation or work trips. It’s nothing major — mainly help with cooking, cleaning, getting into and out…

Avoiding the Folly of Comparison

Being in a power wheelchair, getting fatigued more easily than the average person, and walking with a waddle-like gait are a few bullet points on a long list of Duchenne muscular dystrophy symptoms that make me self-conscious. But more than that, these realities of living with a…

The Joy of Getting to Interview People for a Living

I started writing for my high school newspaper, The Bolt, when I was 17. Now 24, I’m telling the stories of people who make an impact in their rare disease community for BioNews, the publisher of this site. Over the last seven years, I’ve had the privilege of conducting…

Rare Myopathy Affects Women, Too, Advocate Emphasizes

After being diagnosed as a carrier of x-linked myotubular myopathy (XLMTM) and losing her infant twin boys to the disease, Ashley Walker was driven into an episode of alcoholism. What she didn’t know then was that her liver was affected severely by the disease, which eventually resulted in an…