Guiding Principles for Health Equity Research and Advocacy

Dielle Lundberg, MPH

Last Updated: December 11, 2023
First Published: July 20, 2023

Short / Permanent Link to This Essay:
diellelundberg.com/essays/guiding-principles-for-health-equity-research-advocacy

Disclaimer:

The essay below reflect my views in my personal capacity and does not reflect the views of any institutions, funding agencies, organizations, or other projects, entities, or individuals that I am affiliated with or connected to — presently, in the past, or in the future. Similar disclaimers are provided in the footer throughout this website and on my Instagram and Twitter / X social platforms.

Essay:

Introduction:

The following 4 evolving principles guide my current engagement with health equity research and anti-ableism advocacy. My primary purpose in sharing these principles publicly is to state my intentions in research, art, and advocacy given my positionality (link) and to assist potential collaborators in determining if our approaches are well-aligned. I also seek to be clear about my own values for the sake of transparency and accountability with the communities I am a part of.

1. Everyone must be actively engaged in unlearning.

1a. Background

Ableism, racism, sexism, transphobia, and other related systems are pervasive in the United States and in contexts around the world because of the global reach of capitalism and colonialism. I believe that everyone — including people with marginalized identities, people who are senior in their fields, and people who have prior experience with health equity work — hold at least some views and beliefs that have been shaped in negative ways by these systems and thus must be continuously examined, revisited, and unlearned for the purpose of advancing health equity. 

1b. Personal Reflections

My understandings of health equity, disability, ableism ,and racism are all significantly different today than they were 10, 5, or even 2 years ago and will almost certainly look different again in 2, 5, or 10 years in the future. As a student and researcher, I am continuously learning new knowledge and approaches related to health equity work through the scholarship and advocacy of other community members. To practice humility and name a few examples, the importance of framing health disparities and public health issues through a structural lens, the negative effects on communities of deficit-based framings of public health issues, intersectionality as a necessary critical approach, the role of language in public health and healthcare in perpetuating disability, weight, and other types of stigma, the awareness that many spaces and programs for disabled people have been used to control disabled people, and many of the values I am expressing in this document around positionality, equity, and decentering myself within health equity work are all areas that I have been educated about — through feedback, the work of other scholars, and/or the perspectives of community members and activists.

I think it is important to acknowledge that despite the various minoritized identities I hold, I have a responsibility to remain engaged in unlearning views that have been shaped by internalized ableism, trasmisia, sexism and systems that have harmed me along with the systems that afford privileges to me and my social identities such as whiteness, racism, classism, and colonialism. Ableism in particular can be deeply internalized — given the pervasiveness of ableism in the health and disability-related services that disabled people often first seek support from. To deeply disinvest from ableism and other systems of oppression, I believe that community relationships and long-term engagement is essential, and as I engage in scholarship in this area, I want to directly acknowledge that my work on this remains ongoing.

1c. Practical Implications

While many who hold power in academia, science, and public health seem uncomfortable with change, I believe that transformation and growth are at the heart of health equity. Our current understandings are often constrained by the systems that we live in and that we have grown up in. For this reason, I believe that openness to change has the potential to lead us all to new (and ancestral) forms of knowing that have liberatory potential for everyone — even non-disabled people, white people, cisgender people, and/or others with socially privileged identities. While unlearning looks different for each of us individually depending on our own positionalities, at a minimum, I believe it involves engaging continuously with the written and spoken words of marginalized people, remaining open to feedback and thoughtfully considering it when we receive it, being intentional about seeking diversity and representation within our collaborations, meaningfully investing time and other resources to take responsive actions when someone shows us a way to do our work better, and being willing to step back or away from a project if a community asks us to do so for the benefit of the work. I believe the principles of restorative justice are particularly pertinent here, which typically include listening and responsive actions at a minimum.

Ultimately, part of my reason for making my scholarship, processes, and ways of contacting me public on this website and through the social media platforms I am (very reluctantly) active on is to invite feedback, conversation, and growth. This is my invitation for you to call me in. We may not always agree, and I think that’s healthy. But where we do agree or when you take the time to educate me about where I can take actions to do things that are more in line with our shared goal of advancing health equity, I am willing to listen, consider, and take appropriate actions you suggest. That being said, if I feel — after dialogue with my close collaborators and community — that specific feedback is coming from a place of unexamined privilege or is ultimately just a different view, perspective, or reflection of values than mine and that public conversation is benefitted by having multiple perspectives in dialogue with one another, I think it is reasonable to take what I can from the feedback and leave the rest. Furthermore, I have a personal belief that it is not generally a productive use of my time or frankly anyone’s time to engage with people in good faith who do not engage in good faith with me.

2. Positionality is important within health equity work.

2a. Background

There are diverse views concerning what role people who are not from a particular minoritized community should have in health equity research and/or other advocacy involving that community. While every situation is unique, my personal and evolving view is that: (1) projects should include significant leadership by people whose positionality is similar to the community in which the work is occurring, (2) projects are often enhanced by having people with diverse lived experiences outside of the community involved, (3) involvement of such collaborators should typically be in a secondary role in which leadership and decision-making power is maintained by those with more similar positionality to the community, and (4) direct collaboration with and involvement from impacted people is desirable whenever possible.

2b. Personal Reflections

In line with these values, in July 2023 — acknowledging I am no longer in a place in my career where I am primarily focused on gaining coding skills and have more opportunities to be selective with projects and collaborators — I developed the following preliminary guidelines to inform my research collaborations:

1. All project leaders must be willing to communicate about their positionality.

2. For publications and projects with a primary focus on disability, neurodivergence, chronic illness, madness, mental illness, and/or ableism, I expect that a person identifying with those experiences is first author, senior author, and/or principal investigator. In particular, I prioritize collaborations with multiply minoritized disabled people and whose experiences closely align with the project.

3. For publications and projects with a primary focus on queer, transgender, and/or gender diverse communities, I expect that an openly queer and/or transgender multiply minoritized researcher is first author, senior author, and/or principal investigator. Given that queer and transgender health inequities are skewed very disproportionately towards queer and trans people of color, I prioritize collaborations with folks who identify within those communities.

4. For publications and projects with a primary focus on racialized and ethnic inequities and racism, I expect that a researcher of color is first author, senior author, and/or principal investigator. If a project is primarily focused on a specific community, the first author, senior author, and/or principal investigator should identify as a member of that community. 

5. For publications and projects with a primary focus on contexts in the Global South, I expect that a researcher from the Global South is first author, senior author, and/or principal investigator and/or there are other forms of significant and meaningful engagement with Global South stakeholders.

6. I am open to and value collaborations with physicians, nurses, and other health professionals. However, as a psychiatric survivor, I will not collaborate with any physician, nurse, or health professional who is not reflexive about: (1) the enormous harms that the health care and medical professions have had on disabled, neurodivergent, mad, and chronically ill people (along with many other populations) and (2) the ways you yourself may have perpetuated or participated in harm.

7. I value collaborations with advocates and community-based organizations. Equitable approaches around this are a current area of focus in my training and professional learning. That being said, although I believe community partnerships are powerful, I believe folks in public health often under-estimate the amount of time, funding / resources, and planning they require to do well. This includes commitments to ways of working such as centering consistent and open dialogue and feedback from all parties. I state this because although I am someone who is a believer in these types of collaborations, I believe they require appropriately scaled resources attached to them. This is particularly true for minoritized researchers in academia who often find themselves in complex roles navigating their positionality as both outsiders and insiders in academia and the community.

2c. Practical Implications

While I seek to uphold these guidelines in future projects, I also want to note that positionality and representation are both situational and relational. For example, not every disabled researcher may feel safe being public with their identities. Furthermore, the goal of these guidelines is to work towards creating teams that are self-reflexive, representative, and inclusive of minoritized collaborators. If those values are being met in another form, I commit to acknowledging these issues through discussion of the team’s positionality in the project and/or publication. These values also apply to my decision-making around giving presentations and my activities as a facilitator and educator.

3. My work is about shifting power to disabled people.

3a. Background and Personal Reflections

I am personally and professionally committed to having a subversive relationship with academia, public health, healthcare, and science characterized by the goal of shifting resources and power to disabled people, with a specific focus on shifting power to multiply minoritized disabled people.

3b. Practical Implications

Five ways that I seek to accomplish this (and measure it) in my career:

1. The total amount of funding and other resources that I and my collaborators are able to redistribute through research collaborations and other projects to community, art, and advocacy organizations led by individuals from these communities.

2. The number of public health and healthcare researchers and practitioners who I and my collaborators expose to disability studies and disability justice concepts who would not otherwise have encountered or engaged with them.

3. The number of projects in which I and my collaborators influence framing of specific health disparities for disabled people away from a biomedical model of disability and toward an analysis of structural ableism and intersectional health equity.

4. The number of public health and healthcare institutions and organizations that I and my collaborators contribute to acknowledging structural ableism within their history, practices, and policies and commit to specific restorative actions to address these practices such as by giving greater institutional power to disabled stakeholders.

5. The number of interventions, programs, and policies within public health and healthcare systems that are developed or refined with attention to dismantling structural ableism as evidenced by citation of our work and engagement with its core ideas.

4. We are whole people; we deserve rest and joy.

4a. Background and Personal Reflections

Finally, I am fortunate that many of my areas of health equity work are also special interests of mine as a neurodivergent person that give me energy. That being said, health equity work can often become draining and challenging especially when there are insufficient resources to meet the scale of an issues, when political setbacks occur on the issues we are working to advance, when administrative burdens seem to be more substantial than the impact our work is having, and conflicts occur.

4b. Practical Implications

Ultimately, I believe health equity work should take a pause in the event that the people doing the work are consistently burned-out, unable to attend to their own self-care and needs, and not finding any joy in it anymore. This does not mean that the work is positive all of the time, but I do feel that people’s mental and physical health should not be profoundly affected in sustained and negative ways from the work. If they are, I believe that people should have an opportunity to take a break, re-center, and return to it in a new way. This is a value that I offer to all collaborators and one I expect reciprocation from collaborators on. I believe that health equity research and advocacy are much bigger than any one person, and as such, any one person should always have the option to do what they need to do to take care of their health. Wherever possible, I believe collaborations should be proactively designed to support this.

Because I know that this type of health equity research and advocacy challenges systems that are powerful and violent, I seek to intentionally work with teams and projects that center joy, creativity, and connection. In general, I believe that attitudes of perfectionism, hierarchical leadership, blaming, and excessive urgency are all barriers to achieving this. In contrast, I believe that inclusion of art and artists in teams, intentional guidelines and cultures that foster communication and healthy conflict, and celebration of small wins along the way are ongoing facilitators of wellness within health equity-related activities.

Notes:

My original intention in publishing this essay was to inform my own collaborations. In doing so, however, it has led to numerous conversations that suggest that publishing a more formal version of this (focused on some of the topics that have resonated, expanding on questions it has generated, and tailored to specific areas in which I research and advocate) could be useful. I am exploring the prospect of doing this with appropriate collaborators in the year 2024. Many of the ideas I discuss in this essay are ideas I have been introduced to previously by other activists and researchers that I admire. Relatedly, a main reason I hope to produce a more formal version of this essay is to spend time analyzing and giving credit to the sources for each of these values (e.g. other activists, other scholars, and/or lived experiences).

In the short-term, I wanted to state that the work of Dr. Lisa Bowleg and colleagues at the Intersectionality Training Institute (link) has been enormously influential on my values in this area. I also wanted to highlight the following articles as being critical pieces of scholarship in this space — “Integral to inclusion: amplifying public health leaders with disabilities”, “Health Equity Tourism: Ravaging the Justice Landscape”, “Universal Notions of Development and Disability: Towards Whose Imagined Vision?” and “Anti-Black Racism and Power: Centering Black Scholars to Achieve Health Equity.”

This document was originally published in July 2023. It was updated in September 2023 and again in December 2023. The updates focused on making the essay more concise, precise, and organized.