Last fall, in a creative writing course, I wrote a fictional letter that was mostly a satirical piece about my experiences with caregivers. I wrote it from the perspective of a father of a disabled son, who was complaining to the care-giving agency they were using. Aside…
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Henry, Ava, Ella, Daddy, and Mommy. Ella is an almost 7-year-old who has been driving a 300+ lb power wheelchair since she was 18 months old. She has had her share of banging into corners, taking chunks out of the drywall, and catching herself in doorways. Occasionally,…
As much of a geek as I am, I can’t recall the first movie I saw in theaters or the first comic book I ever read. Yet, I do remember a time in fifth grade when I heard a song that blew me away and gave me…
I’m often asked by people how traveling works when you have SMA. The simple answer is that flying is a pain, and it’s much easier to do road trips. Over the years my family and I have gone on road trips to Florida, New York City, Missouri, Oklahoma, Colorado, Texas,…
On Saturday, May 27, I’ll be boarding an Amtrak train at Union Depot in St. Paul, Minnesota, at some god-awful time in the morning. You can tell my mom was the one in charge of the trip itinerary. We have a layover in Chicago, and…
As I wrote in a previous column, the unpredictability associated with SMA is in many ways the hardest aspect of the disease. I’ve broken my leg several times, but this was the first time the doctors allowed the bone to heal on its own, instead of casting it or performing…
I don’t want to spend too much time talking about video games — mainly because I know some of my readers have never played one. However, for my last installment (for a while, at least), I want to discuss how video games and their inaccessibility have forced…
To say that SMA can throw a curveball at you at any given moment is like saying that the “Star Wars” prequels could’ve benefited from more rewrites. There are some things that just go without saying, and every person who has SMA knows how unpredictable and difficult this disease…
Game developers will never embrace accessibility — unless they realize how much the medium means to disabled people. So, continuing with the theme of last week’s column, I want to talk a bit about “Star Wars: The Old Republic” (SWTOR),…
A few weeks ago I had a conversation on Twitter with a guy about the recently announced Batgirl movie, which has Joss Whedon set to write and direct. The movie is slated to arrive in a few years. While the prospect of a Whedon-helmed Batgirl movie is enough to…
