ID: The title Uncompensated Volunteer Labor above a screenshot of a reply from Dysautonomia International. The reply reads: This is a volunteer opportunity for patients and caregivers to have a say in what research gets funded. The words New Blog Post in the lower right corner, beside the words Where’s the Harm?
In a recent social media post, Dysautonomia International asked for “patient & caregiver volunteer grant reviewers…to ensure that all of the research we fund is important to our community.” In this post I explain how uncompensated volunteers are not an accurate sampling of the patient/caregiver community and how organizations like Dysautonomia International can utilize uncompensated volunteers while still creating opportunities for a response from the broader community.
ID: A screenshot of the caption from @DysautonomiaIntl– Would you like to help Dysautonomia International select $800,000 in research grants to fund this year? We are looking for patient & caregiver volunteer grant reviewers who can to review 3-5 grant applications between Nov 8th and 15th. All of our grant applications are reviewed by dysautonomia expert clinicians and researchers, as well as patient and caregiver reviewers, to ensure that all of the research we fund is important to our community. If you want to be a patient/ caregiver grant reviewer you can apply here: bit.ly/Dys Peer Reviewer. (Link in bio!)
When organizations ask for uncompensated patient volunteers, they are only going to get responses from people who can afford to offer those resources for free. Some disabled and chronically ill people have government, community, and/or family support while it can be harder for others to access those resources. According to the National Council on Disability, “People with disabilities live in poverty at more than twice the rate of people without disabilities.” Many chronically ill and disabled people don’t have the time or energy to volunteer without compensation.
When organizations ask for input from patients, caregivers, researchers, and clinicians– but only compensate clinicians, (or clinicians and researchers) they are devaluing chronically ill and disabled people’s time and input while elevating the input from researchers and clinicians. It is literally deeming the responses of clinicians and researchers as having more worth. Disabled and chronically ill people are the authority on their experience.
In a response to questions about compensation, Dysautonomia International replied, “This is a volunteer opportunity for patients and caregivers to have a say in what research gets funded.”
ID: A screenshot of a comment left by Dysautonomia International. This is a volunteer opportunity for patients and caregivers to have a say in what research gets funded.
But if not all disabled people can afford to be uncompensated volunteers then organizations like Dysautonomia International are really giving an opportunity to a specific group of patients and caregivers who can afford to offer them free labor. Creating an “opportunity for patients and caregivers to have a say in what research gets funded,” is only admirable if all patient/caregiver voices are given an equal opportunity. To get an accurate sampling of people across the spectrums of chronic illness and disability, they must offer compensation or frame the request differently.
There is nothing inherently wrong about asking for uncompensated volunteers. Uncompensated volunteers can be immensely helpful. They add a much needed perspective and lived experience, especially in spaces dominated by practitioners and researchers. They can add valuable labor to non profit organizations that are trying to survive on very thin margins to increase funding for research. But that wisdom is exponentially increased when we make opportunities available to more multiply marginalized patient voices. Uncompensated volunteers should not be expected to speak for the whole community. There are many other ways to utilize uncompensated labor while still prioritizing a response from as many patients/caregivers as possible.
For example–in this case, Dysautonomia International could shift how they use uncompensated volunteer labor. They could ask uncompensated volunteers to summarize the research grant applications (writing a few sentences explaining each application and an idea for a title) and to create a survey that lists the titles and summaries and a place for people to record their top three choices. This survey could be open to all patients/caregivers, thus providing a more robust sample. This would not create much more work for the organization, while optimizing the amount of input they receive. It just changes how the organization uses unpaid labor and prioritizes the ability for a response from more patients and caregivers without asking them for free labor. This would showcase the organization’s understanding of the chronically ill and disabled community’s abilities and needs, while showing that they value patient/caregiver's time and input.
Join me in asking that Dysautonomia International reconsider how they engage with the patient/caregiver community and how they utilize uncompensated labor.
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