- April 15, 2020
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. Go here to support Syren’s fundraiser ahead of publication.
Key links mentioned in this episode:
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
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Transcript coming soon!