070: Disabled Hikers’ Syren Nagakyrie
Syren Nagakyrie (she/they) is the founder of Disabled Hikers, a community and resource for those living with disabilities (and their loved ones) that enables and empowers them to access nature. An activist for accessibility and inclusion, they come from a working-class background and have struggled to retain adequate healthcare for most of their life. Syren lives with multiple invisible conditions, including hypermobile Ehlers-Danlos Syndrome (hEDS), dysautonomia (postural orthostatic tachycardia syndrome, or POTS), and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) — all of which cause them to live in chronic pain. They also live with clinical depression and complex PTSD. The Disabled Hiker’s Guide to Western Washington and Oregon: Outdoor Adventures Accessible by Car, Wheelchair, and Foot is being published by Falcon Guides in 2021.
Tune in as Syren shares:
- that their illnesses are in various stages of diagnosis because of the state of healthcare here in the US
- that when they’ve been insured, they have usually been on a form of Medicaid, which has rarely been adequate (they’ve never been able to access private medical care)
- that they are only able to work part-time, and manages life on a limited income
- that their father was also disabled
- how they rose to the challenge of self-advocacy as an adult
- that a lot of adaptive gear is inaccessible because of its high price point
- that a lot of people learn about adaptive gear through disabled athletes — but we don’t all have to perform at that level
- that so many of us need more than a paved path and/or adaptive gear to make it into the great outdoors — and these accessibility needs should to be acknowledged
- how they have enacted direct change through the National Park Service
- what information could make the outdoors more accessible
- how they’d like to see healthcare in the US change
- why disability “inspiration porn” rubs them the wrong way
- how important it is to ask for help, especially when living with chronic illness
