Coming in 2024!
Canary Corps is a new grassroots, peer-run program from #MEAction to help people with ME, Long COVID, and other infection- associated chronic illnesses find and access local disability services and supports. It is run by, and built for, our sick and disabled community. We plan to launch in 2024 in the United States.
Community Education Workshop
On December 6, 2023 we held our first Community Education Workshop to explain the types of local disability services and supports that will be the focus of Canary Corps. Presentation slides can be found here.
Canary Corps is a grassroots, peer-run program to help people with ME, Long COVID, and other infection- associated chronic illnesses find and access local services and support for people with disabilities. It is run by, and built for, our sick and disabled community.
Canary Corps initial focus will be to help people access support in the following areas:
- affordable health insurance guidance,
- medical care coordination/case management,
- Regional centers for disability information, advocacy, and assistance, and
- home- and community-based services for people with disabilities.
We are starting with these four areas because established, local disability services and supports do exist but our community often has difficulty finding and accessing them. Canary Corps will help people to bridge gaps they face in accessing support for these disability-related and daily life needs.
In the future, we hope to be able to add support in other areas as we identify solutions to help bridge other gaps our community faces as well. Want to suggest other ways Canary Corps could help? Share your ideas with us.
Like “canaries in a coalmine,” we’ve long sounded the alarm on the societal dangers of ignoring infection-associated chronic illnesses, which exacerbate existing social inequities. Following a mass-disabling pandemic, we must take collective action to help one another survive the rampant ableism and medical gaslighting that makes getting the care and support we need to live so difficult.
As sick and disabled people, we believe our most radical form of protest against these systems of oppression is what disabled writer Johanna Hedva calls “a politics of care” in which we build communities of protection and enact forms of support that take seriously our own precarity.
Canary Corps will help sick and disabled people navigate access to local resources, while also building up a network of local activists, and the long-term community power necessary to fight for larger structural change.
Canary Corps will strive to embody the principles of disability justice in our work, which means pursuing liberation and justice for those targeted by racism, misogyny, queerphobia, and other forms of discrimination. In the words of Sins Invalid, “Only moving together, can we accomplish the revolution we require.”
Any sick or disabled person or caregiver can request help from Canary Corps.
Our program focuses on those with ME, Long COVID, and other infection-associated chronic illnesses because living with a complex or energy-limiting chronic illness can create specific barriers to accessing local disability services and supports.
Because Canary Corps’ process involves at least two separate discussions with our volunteers, the individual seeking help does need to be able to meet and communicate verbally with us or have someone who can do so on their behalf.
Sign up to become a volunteer or a future program participant.
Anyone living in the United States can request help accessing disability services and supports in their area. Disability services and supports can vary by state or locality. Because Canary Corps is specifically designed to bridge gaps in accessing U.S. disability services and supports, the program is only available in the United States.
We will start offering assistance when we have recruited and trained an initial base of volunteers. Our tentative launch date is early 2024. Sign up to become a volunteer or a future program participant.
On December 6th, 2023, we will host a community education workshop with more information about Canary Corps and local disability services and supports. RSVP to attend this public event.
Note: Canary Corps is not able to provide an urgent, rapid response to an acute crisis. Instead, we provide slow-paced, peer assistance.
If you are sick and disabled people and in need of help, Canary Corps peer volunteers—many of whom are sick and disabled just like you— will provide a structured, slow-paced, and step-by-step process to connect you to established local disability services and supports. The process includes:
- Scheduling an appointment to meet with us and providing us basic info about how to contact you, where you live, and what type of need you want help with.
- Doing a needs assessment interview where you answer simple multiple-choice questions to help us identify the most relevant information to be able to access help.
- After the interview, we will look up local disability services and supports for you based on the location you provided.
- Then, you schedule a follow-up meeting where we will review with you the information about your needs that you provided, what your local options are, explain how the local programs work, and answer any questions you may have.
- Finally, we can assist with the initial outreach to put you in contact with local staff for accessing disability services and supports and provide them with a summary of relevant information about your situation.
Here is an illustration of our peer model for helping sick and disabled people bridge the gaps in accessing local disability services and supports. We help program participants navigate through the following stages:
Anyone, including caregivers and allies, can volunteer with Canary Corps to help sick and disabled people navigate access to disability services and supports. Volunteering is designed to be structured, safe, and sustainable for people who are sick and disabled. All duties involve performing actions that are narrowly scooped and time limited.
For people interested in volunteering with Canary Corps, volunteers choose to join a specific team based on the role they have the interest and ability to perform. Each team performs a specific task in the linear, step-by-step process of helping people access established local disability services and supports.
Volunteer teams collectively practice the principles of Stop. Rest. Pace. so that no one does more than they are able. Canary Corps will utilize various digital tools and automations so that individual volunteers can perform their tasks independently and asynchronously while still ensuring their efforts are coordinated with their team members and in sync with the work of other teams.
We use the following principles to design the volunteer program:
- STOP: Volunteers can choose to stop or pause responsibilities at anytime
- REST: Volunteers are rotated in a specific role so everyone gets regular breaks
- PACE: Volunteers provide slow, ongoing help – not urgent, rapid response to a crisis
- DEFINED: Task roles for volunteers are unambiguous and clearly prescribed
- SPOON-SIZED: Every volunteer task is made as small as possible
- LIMITED: Volunteers are assigned a only single task, so disruption from someone stopping is minimal
- INTERDEPENDENT: Volunteer team roles support and depend on each other to contribute to the overall goal of helping a given individual.
- SURPLUS: We intentionally recruit extra capacity for each volunteer role so someone can step in if needed at any time
Volunteers are grouped into teams where they perform a specific program role. Certain program design decisions are still being finalized but the main team roles are:
- RESPONSE TEAM: (check email, voicemail, and text messages) 🥄
- INTERVIEW TEAM: (interview & assess participant needs) 🥄🥄
- RESEARCH TEAM: (look up community resource info) 🥄
- ADVISE TEAM: (coach participant on next step to access resources) 🥄🥄🥄
Note: 🥄= amount of effort/difficulty of the volunteer role
Additional teams may be added at a later time to perform certain secondary or advanced duties (e.g. trainers or meeting facilitators, outreach, state chapter liaisons, lived experience advisors, technology & data, subject matter experts, etc).
Canary Corps has carefully selected four initial focus areas of help (see “What is Canary Corps?) based on a number of factors about what we can do that will have the most impact, for the most people, right away.
We recognize that many other needs exist in our community. In the future, we hope to add support in other areas as we identify solutions to help bridge other gaps our community faces.
Want to suggest other ways Canary Corps could help? Share your ideas with us.
Ultimately, what Canary Corps does next will be shaped by those who choose to get involved in this grassroots, peer-run program by volunteering their time, energy, heart and expertise or lived experience.
Sign up here if you are interested in becoming a volunteer, or want to be updated about what comes next.