December 2019: This time last year Ethan and I began discussing what it would look like to let you enter into our world, our real world. I wondered how I could answer the questions few people have been brave enough to voice. I contemplated how to effectively communicate why conversing about diversity is so important.... Continue Reading →
“Have people failed to make accommodations for you?”
This blurry photo from six years ago still brings tears to my eyes. Throughout my 24 years with this disease/disability and its challenges, I’ve asked very few people to make accommodations for me. I’ve rarely spoken up about my limitations. I’ve sparingly sought to modify a rule or standard for my own benefit. Why? Throughout... Continue Reading →
“Handshakes: Good or Bad Idea?”
While shaking my right hand, most people typically react to my misshapen hand in one of four ways: 1. The person quickly lets go of my hand as soon our hands collide. 2. The person lets go of my hand, quickly glances at it, and squeezes my hand again, attempting to apologize for the momentary... Continue Reading →
“Do you ever wish you didn’t have your disease/disability?”
When I was in pre-k, I started praying for just one thing — healing. I knew doctors couldn’t “fix” me, but I believed that God could. At 24 years old, I’m glad He didn’t give me what I wanted in that season of life. Why? In this season of life, which has been filled with... Continue Reading →
“Are people with visible diseases/disabilities really treated differently?”
I was standing outside my mom’s office when I noticed a young boy coming toward me. His eyes widened as he caught a glimpse of my right hand. Before I could even attempt to cover up my hands, the boy started screaming and running away from me. As I listened to his screams and held... Continue Reading →
We’re all a little different
“Hey, let me do it,” my sister whispered while reaching for my french fries. As she offered to feed me, I tried to count how many people were watching me fail to feed myself with my dysfunctional right hand. For just a moment, I want you to step into my shoes. You’re 23 years old.... Continue Reading →
The Uncommon Cold
We like to refer to the cold as a “common” illness. It spreads easily, and we assume everyone feels similar symptoms: Runny nose. Congestion. Coughing. Sore throat. We know these symptoms are common, but most of us aren’t aware of the uncommon symptoms a person with a disease/disability may endure when afflicted with an illness... Continue Reading →
Thoughtfulness
“I went to jewelry store after jewelry store trying to find Lindsey’s engagement ring. She wanted a simple pearl ring that she could wear on a necklace. Then I realized she would never see the pearl if the ring was hanging upside down on a necklace. I tried to explain my solution to several jewelry... Continue Reading →
“How can I prevent someone from feeling excluded?”
When I was 11, my life radically changed within a month. I went into the hospital as an adventurous kid, but I left as a grown up. From then on, restrictions and limitations ruled my life. They formed a fence I had to stand behind as I watched everyone else live a seemingly limitless life.... Continue Reading →
How to Ask If I Would Like Your Help
After 23 years with these hands and arms, I have developed creative ways around obstacles. And yet, there are some obstacles I need help getting around. For example, I have trouble opening any type of bottle. I struggle when I’m cutting my own food. I cannot open a bag of chips unless I use my... Continue Reading →