Partnership for Southern Equity

Booster Shot for Health Advocates

By Wendy Schaetzel Lesko

When it comes to the universe of health advocacy organizations, government agencies and private foundations, expertise is off-the-chart. One significant gap however is the first hand experiences and insights of those young people currently using services and equally crucial, those who cannot obtain vital information or access needed health care. Symbiosis between the professionals and those under age 18 holds the possibility of significant breakthroughs.

“We don’t want to lose them to CVS!.”

-Michele Perlman, Assistant Vice President for Education and Training, Community Health Network

Let’s look at the diabetes epidemic and tooth decay. Denise Webb, now age 20, with whom I proudly and joyfully co authored Why Aren’t We Doing This! Collaborating with Minors in Major Ways, are five decades apart and our lives are vastly different.

Both of us have battled against the predatory marketing practices by the behemoth beverage industry. While working with the Youth Activism Project, I collaborated with a diverse cadre of teens including one with diabetes. They demonstrated unique influence capturing media attention and had irreplaceable impact with elected officials that resulted in a county ordinance restricting the sale of sugar-sweetened beverages (SSBs) in vending machines.

Denise has sharpened her toolkit of skills during the four years she has worked part-time with the Partnership for Southern Equity (PSE). The Oral Health Disparities Project ranks as one of Denise’s most meaningful efforts with this nonprofit that is also the headquarters for Coke Cola.

Encourage These Experts to Challenge

Thinking back to her childhood, she reminisce about “ walking to the convenience store for that absolutely favorite 99 cent peach soda.” Collaborating with PSE Just Health Workgroup, the professionals make certain their teen colleagues are not token advisors. The result is genuine intergenerational interdependence. For example, Denise and other Youth Staff pushed back on the plan by the communications staff to create social media flyers, Instagram live broadcast, etc. Instead they developed an alternative photovoice strategy in specific neighborhoods which became an effective digital campaign. From fun in-person interviews to heart-breaking community documentaries, the input of the young advocates shaped and propelled the way adults viewed health equity and policies in communities.

Data collection was another core deliverable of this Oral Health Disparities grant and the Youth Staff were credited with adding another survey question: “Do you live near a convenience store?” The responses revealed glaring differences between zip codes which informed the Workgroup’s recommendations to address both dental disease and food deserts. Denise emphasizes that this health issue would not be on “Teens’ Top 10 Concerns” but the sincerity and reliance of the professionals were what unleashed her passion to apply their own lived experience and 21st century skills.

Our Youth Staff are not an afterthought, not our guinea pigs or focus group. They are in the work and I’m really excited about that.

– Robyn Bussey, Just Health Director with Partnership for Southern Equity

Multiple strategies to recruit those most impacted and furthest from power along with numerous approaches regarding onboarding, one-to-ones, compensation and other essential intergenerational commitments are described in our 160-page book. Also, don’t miss Denise Webb’s five-minute speech at an international health conference in Catalytic Credibility + Clout of Young Advocates/.

Photo credit: Partnership for Southern Equity

Catalytic Credibility + Clout of Young Advocates

Catalytic Credibility + Clout of Young Advocates

The most eloquent and knowledgeable experts cannot compete with the likes of Denise Webb. Her wisdom shines in the book we co authored Why Aren’t We Doing This! Collaborating with Minors in Major Ways. Denise’s activism started at age 15 and five years later, she still is working part-time with a dozen other youth staff at the Partnership for Southern Equity in Atlanta.

Denise represents the next frontier of youth engagement where organizations go beyond focus groups and advisory councils. There is no substitute for ongoing substantive teamwork – especially those directly impacted – in deliberating together about policy solutions and also participating throughout the decision making process.

Raw reality combined with irrefutable statistics are on center stage when Denise Webb spoke to a huge audience at the 2024 Plenary Session: Advancing Whole Health hosted by the Professional Society for Health Economics and Outcomes Research (ISPOR).

Her words hold so much gravitas and deserve repeated reading. Here are several excerpts from her opening speech.

I am a statistic.
I am one of 500,000 people in Georgia who have lived in low-income spaces.
I am one of 700,000 people in Georgia who has severe asthma.
I am one of 36,000 youth who went through homelessness during K12 career.
I am one of the millions in Georgia who are also part of health and nutrition deserts.

…For my senior year of high school I spent it in a hotel. Living in that hotel eating sandwiches from charity buses, eating frozen food just to warm up, and staying in that small room with no transportation so I was basically stuck and my mental health hit so hard..I remember not wanting to have a future… I didn’t care about wheezing because I couldn’t afford medicine for my nebulizer. I realized that you cannot worry about your health if you cannot afford to fix it.

So I ask all of you, there are people in the community who don’t have PhDs, don’t have Masters degree, high school diploma or Bachelor’s and they are living the exact same issues that we are talking about. Today I urge you to find a Denise – not this Denise sitting on a stage in a suit – but the Denise living in the hotel, the Denise that didn’t want to go to school, and struggling. Think about what’s actually happening in your community and use your resources to help.

Here are a few reasons to embed people like Denise into your organization’s public policy work.. Included are page references to our book.

NEW CONSTITUENCIES REPRESENTED
Young people can mobilize their peers who usually are invisible and if invited, can direct their voices to the powers-that-be. Denise and I describe dozens of recruitment strategies (pp. 90-101). Also, youths can tap their community connections that may include aunts and other family members, faith leaders and neighborhood groups which strengthens the advocacy engine.

2. PIN DROP PHENOMENON
Young people possess outsize influence to capture the attention of decision makers. Denise is living proof how “lived experience” gives a human dimension to data that can be unforgettable. Unlike lobbyists and other professionals, young advocates often attract media coverage which in turn can pressure policy makers to take action.

3. RENEWED PROFESSIONAL PASSION
Our age-segregated society means most professionals, especially senior leaders, do not interact with young people as colleagues. Embedding a cohort of youths in the policy team can reenergize staff and add “joy” which can counter burnout (pp. 33-34)..

4. DEMOCRACY DROPOUT PREVENTION
Real world experiences such as advocating to a city council, school board, planning commission, etc. during the formative teenage years can make a lasting imprint. Collaborating with adults in an organization committed to inclusive and democratic practices holds the promise of lifelong civic engagement where it is the norm for those not old enough to vote to have a seat at the table.

Concrete Impacts

POLICY WIN: Having formal leadership roles for high school students on the Advocacy Committee and other Committees of the Rhode Island Civic Learning Coalition is credited with the victory to increase K-12 funding to $1 Million in FY 2022 (p. 27)..

POSITIVE IMPACT ON THE EXPERTS: “The experience of being in conversation with young people is truly changing the adults’ perspectives of their value to the movement and solidifying a greater commitment to it because they are hearing constantly about why it matters so much from young people.” – Arielle Jennings, Executive Director (p. 27)

POSITIVE IMPACT ON YOUTHS: “At the Rhode Island Civic Learning Coalition, I could share my opinion freely and we could have a conversation. It’s such an inspiration for youth when we are actually working with older people so wise who listened and worked as allies and as friends and as colleagues rather than sitting and waiting for our turn to speak.” – Athena Holloway (p. 83)

Follow Denise Webb on LinkdIN where you can also watch her presentation

Boost Your Advocacy Engine

My job as a community organizer and then as a reporter covering the US Congress are the roots of my dedication to civic participation, especially those more impacted and furthest from power. More recently I have two decades under my belt working with both young activists as well as nonprofits resulting in the passage of county ordinances, state and federal legislation. Check out my coaching services.

Youth in Day-to-Day Operations

These public health professionals respected and relied on the wisdom of teens. They knew firsthand the unique influence and power of youth not only with their peers but parents, policymakers, politicians, and the press.

“I don’t interact with youth much at all.”

This is a common refrain we hear from seasoned professionals and veteran advocates, especially those who concentrate on issues that directly impact children and adolescents.

Imagine an organization where the primary stakeholders join the adults in day-to-day operations. It has happened!

Youth Impact on Organizational Culture

In the case of one high impact nonprofit, more than half the paid staff were under 18. The staff ratio: usually hovering around 10 adults to 25 teen employees, most from historically marginalized communities. Youth staff were not relegated to limited roles but infused in all aspects of this nonprofit:

researching issue areas;
helping conceptualize and write grant proposals;
developing advocacy strategies for local or statewide initiatives;
creating social media campaigns;
leading process to recruit, interview and hire new youth; and
participating in interviews for prospective adult staff.

In the main office of Youth Empowered Solutions! (YES!) in Raleigh, North Carolina, I saw worn bean bag chairs, unframed posters, and other evidence where young staff ‘lived’ several days a week after school.

During my roundtable discussion, the lively atmosphere and banter contrasted with the thousands of meetings I’ve experienced. I felt like the adult staff at YES! were imbued with dare I say… JOY.

My experience and intuition would lead me to conclude this job satisfaction and spirit are linked to their close collaboration with their young colleagues. This mindset is described by Warren Bennis and Robert Thomas:

“We discovered that every one of our geezers who continues to play a leadership role has one quality of overriding importance: neoteny. Neoteny is the retention of all those wonderful qualities that we associate with youth: curiosity, playfulness, eagerness, fearlessness, warmth, energy…Neoteny is a metaphor for the quality-the gift-that keeps the fortunate of whatever age focused on all the marvelous undiscovered things to come.”
Geeks & Geezers: How Era, Values and Defining Moments Shape Leaders (2002)

The co-founders of this nonprofit had extensive experience collaborating closely with teens, notably fighting Big Tobacco in North Carolina–the top state producer of this lethal product.

Organization Outcomes

Over the past decade, Youth Empowered Solutions! has employed more than 100 young people from all across North Carolina, and empowered thousands of youth from 25 states. This intergenerational advocacy engine is credited with changing hundreds of policies and systems to address racial inequities and adolescent health disparities ranging from food deserts to dental care. As co-founder Katie Spears Warner describes:

The role of young people contributed to a more cohesive team, reduced burnout and attrition among adult staff. There was this sense of family and belonging and we were dedicated to the work and to one another. When you are supporting the growth and development of young people, while also committing to the humanity of people and racial equity-the experience is nurturing and healing in many ways.
I would make the assumption that is why many of the YES! founding adult staff stay for a decade and the youth staff stay connected well beyond high school years, through college or the workforce and into their adult lives–oftentimes still connecting today to their former Adult Leads.

Now YES! has evolved into YES! for Equity and officially is operating as part of the Atlanta-based Partnership for Southern Equity. Learn more about this exciting organizational development from my long-term colleague Katie Warner (KWarner@psequity.org).

Our workshop teaches the essential skills for adults to adapt to this new power dynamic which includes making it the norm to interact with the rising generation. For more details, please contact us!