Just a couple of days ago, the FDA approved a new treatment for my disability, Spinal Muscular Atrophy (SMA). It is called Evrysdi (the chemical compound was called Risdiplam) and, unlike the previous major therapy, Spinraza, it comes in the form of a pill rather than a spinal injection. This means that people like me… Continue reading To Cure or Not to Cure?
This week I was talking to a friend online (as I often do these days) and we were discussing the different models of disability. The changing model of disability has always been a really interesting concept to me, not only because it legitimizes and makes concrete some of the more abstract concepts that I struggle… Continue reading Introduction to the Models of Disability
As you may have heard elsewhere, today is the 30th anniversary of the passage of the Americans with Disabilities Act (ADA). Before the ADA was passed, public facilities were only required to be accessible if they received federal funding. The ADA widened the net of protections and has been the most substantial legal step towards… Continue reading The ADA Turns 30!
While I'm not going to promise that this will be my last COVID-related post, I do promise that I will change the subject after this week. I know it's been a lot for everybody both inside and outside of the disability community to hear about constantly, but it's important that we don't forget that people… Continue reading “Sorry, But That’s Impossible”: Accommodations in the Age of COVID-19
Sometimes I'll come up with an idea for a blog post and spend like weeks hyping it up in my own mind before I write it. Then, by the time I get to it I draw a complete blank about what to say. This is one of those posts. How do I even begin talking… Continue reading The One Where I Talk About COVID-19
Trigger Warning: Suicide, illness Growing up, I was in the hospital A LOT. I had severe respiratory illnesses all throughout my childhood multiple times a year, and every time I would get sick, my parents would be by my side as often as they could be. I was pretty much never alone in the hospital… Continue reading Mental Health Part Three – I’m Not a Burden
My parents often tell me about an experience they went through right before I started elementary school. They had a meeting with my principal where they took a tour of the school and made sure that it would be accessible and right for me. It was a public school, but they still wanted to make… Continue reading Access to Education
In the Spring of 2012, when I was studying film at Mizzou, I got an email about a study abroad course for my major. Now, Film Studies was a relatively new major at the school so study abroad opportunities for it were basically nonexistent. I was psyched. after looking closer at the email, I learned… Continue reading My Trip to Greece
It may be surprising for those who don't already know that traveling with a disability can be very difficult, but is not often impossible. For those of us with mobility issues, we have to think about accessibility laws where we're going if we're unfamiliar, how we will physically get there (trains, buses, cars, and planes… Continue reading Traveling with a Mobility Impairment
Do you remember your worst date? Does the memory of it make you cringe? Mine does. My worst date was with a guy I met on OkCupid. He lived 45 minutes away in the outskirts of town so when we decided to finally meet in person, we picked a Burger King that was halfway between… Continue reading Dating While Disabled