All tagged Disability
As I heal from what I hope has been a successful surgery, I am grateful to my friend Bud, AKA Emma’s dad, for offering to fill in for me on the blog this week. With the potential cuts to both Medicaid and the NIH on the horizon, Bud's insights provide a much-needed reflection on how we perceive worth. While his words are philosophical, the consequences of perceived worth are a reality for millions.
It is hard to believe that it’s been four years since masks became a common accessory and the words pandemic and quarantine entered our daily vocabulary. Those mid-March days were a delineating event, etched in our memory not unlike where we were on 9/11. Even if our world now more closely resembles our maskless and activity-packed lives of before I hope the lessons of those uncertain days are not forgotten. So, this week I’m resharing a post I wrote on March 27, 2020, to remind us.
I’ve dedicated more than one blog to extolling the virtues of siblings of kids with disabilities: empathy in spades, adaptability, and kindness for all, to name a few. This weekend, when dropping Jackson off for camp, I discovered another to add to the list. Now, at the time Jackson was developing this particular superpower, I was fairly certain I was damaging him for life. Turns out that could not be further from the truth.
“How to be a better support for the growth of those around me has long been the special object of my consideration, and yet, I am hesitant to offer anything more than observations from my own meandering experiences.” While reticent to offer advice, Bud Hager has taught me more than most - and by utilizing some of the most beautiful prose you have read in ages! Please enjoy this new piece from Bud.
In honor of Rare Disease Day (which was this past Tuesday), I am highlighting the story of a fellow rare disease zebra: Fiona Wilson, who was born with Turner Syndrome. Rare diseases can be so very isolating because they are, by definition, rare. It makes finding a community that understands imperative. Fiona’s diagnosis may be rare, but her experience is far from it. And her lessons are universal. Just ask Stephen Sondheim (“Alexa: play ‘You Are Not Alone’ from Into the Woods”).
This weekend, Miguel and I had the honor of attending The Nora Project’s annual gala and it was altogether perspective-changing. I think a lot of us get on our soapbox of choice and talk about disability and inclusion but often fall short of fully executing… myself included. On Sunday evening, I was able to see what a truly inclusive event can look like. Which got me thinking (not for the first time) about the emotional toll our exclusive society can take on those with disabilities.
…And that’s when Linda Beresford’s email entered my inbox.
