I have a genetic condition called Hypermobile Ehlers Danlos Syndrome, it’s a collagen disorder that causes my joints to constantly pop out and a whole laundry list of symptoms and side conditions that I will spare you in this post. Long story short I live chronic pain, fatigue, brain fog and mobility difficulties.
For the most part, my symptoms are manageable and I have a whole set of strategies, adaptations and workarounds that help me cope with the day to day and that might mean that if don’t know me very well, you might not know there’s something wrong with me.
I never really did much to identify with the community, I did join a facebook group or two and exchanged hacks with fellow zebras. People with EDS are called zebras because of our rare condition and the old saying that when you hear hoofbeats you should think of horses, not zebras. But 2020 was an odd year and it made me rethink my disability and accessibility in general.
In 2020 I saw school, work and social events move online to accommodate for our impending health concerns. I also saw people I trusted and respected, in addition to complete strangers, making comments that diminished the importance of these measures since “covid is only dangerous for the old and sick”. I was shocked to see comments dismissing the lives of people with chronic conditions, of people like me.
2020 led me to rethink my disability, the communities I’m involved in, the people I interact with and what is and isn’t acceptable. It also prompted me to take a hard look at myself think about what I do every day and how do I contribute to make the world accessible, inclusive and better for people with disabilities like myself.
The clearest, easiest way I can do my part for people like me is through my work. Making sure everything I create and build is done in a way that provides the best usability for everyone, regardless of their disabilities, technologies or preferences. And it goes beyond usability, I will make sure my work represents disabled people and diverse people in research, user personas and marketing images. Finally through advocacy, by being vocal about my own disabilities, by educating on the importance of accessibility and inclusivity and by providing pro bono work to people and organizations who have been neglected and misrepresented.
This is my commitment to accessibility, and how I understand it and live it every day. If you want to access a more technical or detailed account of what my business Accessibility practices are, check out the Belonging section of my website where you will find my Accessibility Statement for this website and the framework of Universal Design that implement to build this and my clients’ sites, as well as how I practice accessibility, inclusion, equity and justice for a diverse group of people.