suerobins.com

The other day I was talking to Aaron and in the midst of our conversation I mentioned, “you have Down syndrome. ” He looked at me, puzzled, and replied, “No, I am Down syndrome

John’s Crazy Socks was born from a dark time, when Mark lost his job at age 58 at the same time John was finishing high school at age 21. While I’m committed to celebrating Aaron’s advancement towards adulthood, I’m also scared. John’s Crazy Socks makes accommodations for their employees, but think about what Mark said, “There are accommodations because you make accommodations for any workers. This way of thinking is so evolved beyond those awful news stories that I read about organizations ‘allowing’ people with disabilities to volunteer for them.

I had a number of speaking engagements booked with health conferences when I was diagnosed with breast cancer two years ago. I was asked to present about my breast cancer patient experience at a health conference. My unease with being a patient speaker at health conferences, no matter the topic, boils down to this:  parading out a lone patient speaker feels like tokenism to me. If you are a patient or family speaker and you don’t agree with me, that’s okay.

Before I had cancer, I didn’t understand how much people are really truly terrified of cancer. Cancer, cancer, cancer! This blog post by Molly called I Have Died is stunning and sad in her articulation of what it feels like to be abandoned by friends and family when you have cancer. This has taken two full years of hard work to get up, which has included the love of a good man and my three children, loads and loads of private mental health therapy, one cancer retreat, a general avoidance of oncologists and the health system, meditation and daily walks.