New Year's Resolutions
It's 2019. I have one year of grant funding left to make a difference for people with Energy Limiting Chronic Illness (ELCI for short).
I'm daunted by the task. Scared I'm not up to the challenge.
By the end of 2019 I want #energyimpairment to be a thing that policy makers understand and take account of when designing strategies to improve the lives of disabled people, in the way they (ought to) do with sensory impairment, learning disability, mobility impairment and people with mental distress. I want people with ELCI to be considered and listened to.
I know that feels like pie in the sky right now. Like all disabled people, we face a political climate of hostility. We bear the brunt of the political choice of austerity. Our hard won rights are being dismantled. Our very survival is under threat. But the additional element of oppression we have to battle with ELCI is disbelief. Disbelief from doctors, health professionals, from employers and government agencies to colleagues, friends, and family.
Institutional disbelief is what we are up against. It is there in the innocuous sounding phrases: "Everyone gets tired" and "you don't look sick". Institutional disbelief results in denial of support and disentitlement to services, even where they exist. It causes deep wounds to our innermost sense of self and self-worth. In some cases, disbelief even means we are abandoned by our next of kin.
Before our needs can be met and our aspirations enabled we have to be believed. I will be working up to a manifesto for ELCI for the end of 2019 based on the opinions and priorities of the hundreds of people who have taken part in our research . But I worry about whether this will be enough to leave a legacy after that.
Despite having a wonderful mentor, a great co-worker and some fantastic support from our Advisory Group, I'm scared I'm not up to the task of speaking up, persuading and changing minds. Like all of us, I'm extremely short on spoons. I'm also a solitary thinker who has lived on the margins of society for the last 30 years because I've been too sick to work all my adult life.
So my New Year’s resolutions for 2019 are:
To resist my natural introversion every day and speak up on behalf of others who have less of a voice than I do.
To use every day of 2019 to perform a small act of advocacy for people with ELCI.
To battle against feeling demoralised by the enormity of the task and my acute shortage of spoons.
To open up and share my struggles, and in doing so, to empower others to take action and perhaps create a team that can take this work forward into 2020 and beyond.
I hope you'll join me. Happy New Year.