My name is Aimé. For the past 12+ years I have been disabled by two rare autoimmune diseases – Aplastic Anemia and PNH – which over time have imposed limitations of severe fatigue, limited brain function and hyper sensitivity to the wider world, on my ability to be engaged in physical community.
I have been fortunate, however to find community online with other folks who are disabled and in other life conditions that have resulted in a state of constant survival struggle. I have found support and comfort knowing I am not alone and in discussing the ways we stay alive. Our voices are painful to hear and our stories excruciating, yet I’m on fire by our cries for equity in a culture that marginalizes those who do not fit societal norms.
With that, I have had the immense fortune to meet other like-minded folks wanting to create better networks for people like us to find a safety net of community support – in online collaboration that leads to concrete solutions locally.
We are currently working to create an online Disability Network that seeks to find community solutions to the challenges faced by those often left to fall through the cracks of the systems meant to help those on the margins of “acceptable” societal functioning, yet only offer meager survival. We are creating a safety net of support, for folks struggling to exist in security, to be able to use that support to find stability and to then be able to help others in turn.
What’s that saying? “A rising tide lifts all boats.” We seek to be the swell that lifts us all up beyond just surviving into thriving.
We have a number of platforms where we are creating this community network, and invite those who are interested to get involved! There are links here on this page to navigate to, as well as posts in the feed that direct you to where we are working on Telegram from day to day.
I am excited about connecting with more networks of helping people and I hope you will join me in seeing this community grow and thrive!