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Erika Hagensen, National Coordinator, CHE's Learning and Developmental Disabilities Initiative
CHE Partner Spotlight
 What first brought you into environmental health work?
My interest in environmental health work is two-fold. With a professional background in Maternal and Child Health and disability policy, a focus on environmental health issues was inevitable. Vulnerable populations are at higher risk of exposure to toxicants and often times have less access to care. That combination of persistent inequity is dangerous and unacceptable.
As a woman of child-bearing age, I developed a keen personal interest in environmental health work as well. I am exposed to any number of known and unknown toxicants without my consent. To combat this, I had two options: Educate myself and others about our risk of exposure, and advocate for healthy policies and increased oversight.
What is your primary mission in your work?
Over the past 15 years, I’ve been working within the disability community to realize the power and necessity of our voice. Many individuals with disabilities and their families live with extraordinary economic, health, and employment disparities, are disproportionately affected by policies, and yet their voice is often absent from discussions. In the realm of environmental health specifically, individuals with disabilities have a key stake in education, outreach, and policy development. I want to help bridge some of the discussions between the environmental community and the disability community, broaden educational outreach, help diverse groups identify their role in the field moving forward.
What are the most important recent developments in your work, scientific or otherwise?
LDDI’s Mind, Disrupted (http://www.minddisrupted.org/) report offers such a critical insight into neurotoxic and endocrine disrupting chemicals as they relate to the learning and developmental disability community. By engaging leaders and self-advocates from this population to identify their personal body burden and educate others about toxic chemical issues, Mind, Disrupted helped put a personal face on such an important issue. I look forward to showcasing this important work within the disability community, and I hope it will encourage new faces and organizations to begin to focus on environmental health issues in the future.
What successes have most encouraged you in your work recently?
I’m completely encouraged when I think of the diverse and strong partnerships that are being developed between environmental health experts, researchers, and the learning and developmental disability community. CHE has done an extraordinary job of bringing various groups to the table in meaningful, productive ways. It’s through partnerships and thoughtful inquiry that new individuals and organizations can learn about environmental health issues, identify trusted resources, and move from “this is an important issue,” to “this is my issue.”
What have been some of the greatest recent challenges?
One of our enduring challenges is lack of data. Very little data are being collected on the effects of toxicants in the general population let alone possible unique effects and outcomes within the disability community. Data offers the foundation for personal choices and policy development. It provides clarification, validity, and is so often the catalyst for change. Without critical research, we are often left with hypothetical discussions of valid concerns and the inability to calculate the true effects of known bad actors.
What would you regard as the most significant potential future developments in your field?
Healthy aging is a growing area of interest for so many these days, but never more so than for people with disabilities and their families. Individuals with developmental and other long-term disabilities experience unique aging sequelae, and yet very little research is available. How do we address the unique aging needs of the disability community? What factors might toxicants play in the aging process for the larger community and individuals with disabilities specifically? Given the significant barriers to care that individuals with disabilities experience, how can patterns and data be captured and research developed? The list of questions is long and millions of people depend on the answers.
What or who continues to inspire you in your work?
As a person with a disability, I’m a product of the work of people who have come before me: Parents, professionals and self-advocates who tore down barriers to education, employment, and the physical environment. I continue to be inspired by everyday participants who take the time to educate themselves about issues facing our community, teach others, and make a difference.
Any thoughts to share with others about CHE?
CHE is a truly unique an innovative collaborative endeavor based on strong partnerships, cutting edge science, and thoughtful inquiry. I’m so pleased to have joined this respected community and hope that I can make a contribution during my tenure.
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