DYSAUTONOMIA & EDS RESOURCES
I am in no way affiliated with any of these people or organizations.
These are resources that have been useful along my journey.
ORGANIZATIONS
This is a list introducing some of the more notable international organizations supporting EDS and Dysautonomia research, awareness and advocacy. But please look for groups in your area. Local support groups and organizations can be invaluable for understanding our illnesses, learning life hacks, and finding a community who understands our experiences.
EHLERS DANLOS SOCIETY
"The Ehlers-Danlos Society is a global community of individuals, caregivers, healthcare professionals, and supporters, dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related conditions."
"We work to minimise the impact of EDS by making its diagnosis, treatment and management accessible to everyone when they need it... We have four areas of focus guiding all of our work: education and awareness, support for those affected by EDS, better knowledge through research, organisational capability – making sure we are a high performing, sustainable organisation"
Our mission is "to identify the causes and cures for all forms of dysautonomia and to enhance the quality-of-life of people currently living with these illnesses." Our goals are to "raise funds... raise awareness... and empower patients and caregivers."
DISABILITY JUSTICE RESOURCES
I am in no way affiliated with any of these people or organizations.
These are resources that have been useful along my journey.
THINGS TO READ
Welcome to the Disabled Community
by Alice Wong
"The Disability Visibility Project is an online community dedicated to creating, sharing, and amplifying disability media and culture." The creator, Alice Wong, has also published multiple books, including one titled Disability Visibility, an anthology of disabled stories offering a glimpse into different, disabled lives. As Shir Kehila writes in Columbia Journal, "In a way, many of the pieces in this collection call for a similarly necessary and well overdue consideration: for the lives of disabled people to be acknowledged for their irreducible humanity, brought in from the sidelines, and included within the frame of human society, as part of its tissue."
by Leah Lakshmi Piepzna-Samarasinha
This book explores the emotional labor that goes into managing chronic illnesses and disabilities-Â both as a patient and those that support us. It explores a world of care collectives of disabled and chronically ill people showing up for each other. This book gave me hope of a new tomorrow and filled in some of our community's history.
by Tessa Miller
Half memoir, half journalistic exploration of the intersections of our healthcare system, our ableist culture, and the ugly side of chronic illness and disability. This book made me feel seen and less alone.
MOVING TOWARD THE UGLY: A POLITIC BEYOND DESIRABILITY
by Mia Mingus
"We must shift from a politic of desirability and beauty to a politic of ugly and magnificence. That moves us closer to bodies and movements that disrupt, dismantle, disturb.  Bodies and movements ready to throw down and create a different way for all of us, not just some of us." Click the title to read more and find out why.
THINGS TO WATCH
Representation matters.
When I saw Lydia X. Z. Brown speak, they began their talk by inviting us to show up in our bodies as we were in that moment- a first in my life. Their talk made me feel seen in a way I didn't even know I could hope for. They are a powerful writer, organizer, advocate, and activist, but their charisma while speaking is why I've listed them under things to watch. Also, go read some of their incredible work here. Click the title to view a brief video of Lydia created in support of the We The Future campaign.
Ryan O'Connell is a hilarious writer. So hilarious that he was able to turn his autobiographical debut novel into a show for Netflix. Special is about his life as a gay man with cerebral palsy. It's witty and timely but mostly, it's so important to be able to see ourselves reflected in the media we consume.
Ramy is a Peabody award winning show about growing up Muslim in New Jersey. The semi-autobiographical show co-stars the titular character, and writer, Ramy and his real life best friend, Steve Way. Steve is a talented comedian and actor with a rare form of muscular dystrophy. Steve is not portrayed by a non disabled actor. Steve is portrayed by Steve, and that's a big deal. On being cast in Ramy, "Ramy was a big advocate for me. He used a lot of my stand-up and I did some audition tapes. It’s very, very hard for people like me to be on TV. I mean, when was the last time you saw someone who looked like me on TV or in a movie?"
ORGANIZATIONS
Community matters.
"Project LETS is a national grassroots organization and movement led by and for folks with lived experience of mental illness/madness, Disability, trauma, & neurodivergence. We specialize in building just, responsive, and transformative peer support collectives and community mental health care structures."
"Sins Invalid is a disability justice based performance project that incubates and celebrates artists with disabilities, centralizing artists of color and LGBTQ / gender-variant artists as communities who have been historically marginalized... Sins Invalid is committed to social and economic justice for all people with disabilities – in lockdowns, in shelters, on the streets, visibly disabled, invisibly disabled, sensory minority, environmentally injured, psychiatric survivors – moving beyond individual legal rights to collective human rights."
MINDFULNESS
RESOURCES
I am in no way affiliated with any of these people or organizations.
These are resources that have been useful along my journey.
GUIDED MEDITATIONS
These are just some of the ways to practice mindfulness.
Truly a wealth of meditations of all different types and durations. Also check out the Insight Meditation Community of Washington DC (IMCW) that she founded. "One of the largest and most dynamic non-residential meditation centers in the United States."
Insight Timer is a mediation app that offers over 130,000 guided mediations, a meditation timer, live events, and classes for free. You can access their resources through their app, website, and YouTube.
Headspace is a subscription based meditation app. It boasts more than 500 guided meditations for different situations and age groups (like Headspace for kids). It provides guided meditations, and animations, with articles, and yoga exercises available through their website and YouTube.
This is a wonderful resource to explore the world around you. Whether you're new to labyrinth meditation or a life long fan, this allows you to find new labyrinths wherever you go. Some are presented monthly, others only open with permission, but many are always available in parks and places of worship.
PRODUCT
RESOURCES
I am in no way affiliated with any of these people or organizations.
These are resources that have been useful along my journey.
TOOLS
Some things that help me.
Walk Easy makes canes and forearm crutches. They offer many great tip and grip options, as well as foldable canes and crutches. I personally use one model 495 with the sheepskin cuff cover and a tornado tip to help in the PNW rain.
I recently got a set of Knork flatware after struggling with cutting soft foods. They are slightly heavier and thicker than your average flatware, which offers me a better grip. The fork's tines are rounded and bevelled to allow you to easily cut food with the edge of your fork.