Many, many years ago, I gave a presentation on the Americans with Disabilities Act (ADA) of 1990. I was in middle school at the time, and was hopelessly devoted to the concept of “normalcy.” I wanted more than anything to fit in. To live a different life, with cliques…
Columns
I’ve collected a variety of scars throughout my life. Many people with SMA have comparable ones from similar surgeries. Even if you don’t have SMA, I’m guessing you also have at least one or two scars of your own. Each of my scars tells its own story of a difficult…
This is going to be a tough truth to admit, mostly because I’m still a little embarrassed by it all these years later. But, here we go. When I was originally offered this role as a columnist for Bionews — the company that publishes this website — I turned…
School will start in a month or so, and Ella will be entering fifth grade, while her brother, Henry, starts sixth grade, and her sister, Ava, starts eighth grade. The local school system is presenting families with two options for this year. The first is…
As someone who avoided the disability community for years, I am slowly learning that I am not alone — my struggles are shared by hundreds of thousands of people across the world. “The Pretty One: On Life, Pop Culture, Disability, and Other Reasons to Fall in Love With Me,”…
It’s probably safe to say that these past four months have been a blur for many. It seems that mere blinks ago it was mid-March, the last days of normalcy in untold routines, and the beginning of upheavals that have defied description. Somehow, it’s already four months…
Ella is 10 and will start fifth grade this fall. She has “magic” adjustable rods in her back that give her height. But she has exhausted the length of the rod and will need a new one put in soon. She weighs 36 pounds, a dramatic drop…
July is recognized as Disability Pride Month, as it coincides with the anniversary of the signing of the Americans with Disabilities Act of 1990. Whereas this law secures basic rights for those of us with disabilities, disability pride is a phrase that encourages…
I hoped that things would “get back to normal” — whatever that means — by mid-summer. Reader, I was disappointed. But I’m used to disappointment. After all, I spent the better part of two decades learning to embrace lockdown mentality. I’m an expert at gazing wistfully through windows and wishing…
Because of the current state of the world, I felt safe in assuming I wouldn’t be attending any concerts this summer. I love concerts, but large, tightly packed crowds aren’t safe right now. However, I forgot to account for how creative people can be. On Independence Day, my family loaded…
