Capturing Black Health & Wellness for longer lives

February 6, 2023

Imagine going to your health care provider and receiving a serious diagnosis. Instead of focusing on your health, you think, “How am I ever going to pay for this?”

Unfortunately, this experience is common. More than 100 million Americans carry medical debt; it’s the cause of nearly 70% of personal bankruptcies. Tragically, it strikes unexpectedly and at the worst moment – when one falls ill or needs medical care.

Medical debt does not exist in other industrialized nations. Only Americans will ever require a GoFundMe for a neighbor stricken with an exorbitant medical bill. Crowdfunding pages for those facing difficult medical challenges, while heartwarming on the surface, are an indictment of our entire health care system. A person’s physical or financial wellbeing should not depend on convincing people to “click here to donate.”

For some, receiving a diagnosis for a treatable disease or an extraordinarily high medical bill can be the equivalent of a death sentence. Too often individuals avoid seeking care in the first place because they are aware of how grossly unaffordable health care is in America. Middle-class folks with exorbitant medical debt are likely to think twice before seeking care for chronic or other serious conditions.

With more than half of American adults accumulating debt due to medical or dental bills in the last five years, it is abundantly clear that medical debt hamstrings the economic mobility of working families across the nation, especially those without insurance or living on low incomes. Millions of indebted Americans report cutting spending on food, clothing and other basic needs, draining their savings, losing their homes and declaring bankruptcy. Additionally, medical debt disproportionally impacts women and people of color – women are more likely than men to carry medical debt, and 69% of Black and 65% of Hispanic adults report having medical debt, compared to 54% of white adults.

We believe that working Pennsylvanians should not have to choose between necessities and receiving medical care, between stifling debt or a preventable death. This uniquely American problem requires a uniquely American solution, and the birthplace of our great nation is the perfect place to start cleaning up this catastrophic mess.

It will take extensive reforms to mold our system into one that does not punish sick patients with debt. But with so many people drowning in medical debt now, Pennsylvanians need a life preserver -- stat. To help them quickly, we are introducing legislation to establish the Pennsylvania Medical Debt Repayment Program, which would provide medical debt relief to the most financially vulnerable residents of our Commonwealth.

Our proposed program is modeled on ones that have succeeded at the local level in several U.S. cities and allow for an exponential return on the invested funding. With a relatively modest $5 million investment (representing 0.01% of last year’s state budget) we may be able to clear at least $575 million of the debt burdening Pennsylvania families and holding back the Commonwealth’s economy.

This program would also improve the finances of health care providers and institutions that regularly carry debt on their balance sheet with little likelihood of payment. Such debt affects their ability to deliver on the necessary mission of providing care to those most in need and, critically, results in raising prices for all Pennsylvanians to make up the difference.

Illness and injury do not check your voter registration, and Pennsylvanians of all political affiliations suffer from medical debt. This is not a partisan issue. If you want to help make this program a reality, we urge you to contact your elected officials and ask them to support the creation of the Pennsylvania Medical Debt Repayment Program.

State Rep. Arvind Venkat, MD
D-Allegheny
RepVenkat.com

State Rep. Nick Pisciottano, CPA
D-Allegheny
RepNickPisciottano.com

State Rep. Bridget M. Kosierowski, RN
D-Lackawanna
RepBridget.com

State Rep. Tarik Khan, PhD, CRNP
D-Philadelphia
RepTarik.com 

State Rep. Donna Bullock, JD

D-Philadelphia
RepDonnaBullock.com 

The Western Pennsylvania Disability History and Action Consortium (WPDHAC) has launched a new, ongoing effort to document and share stories of people with disabilities who are people of color.

The history of people with disabilities has only recently become part of the narrative of American history. Within this context, the stories of people of color who have disabilities are especially untold and under-represented. This omission is coming to light as our nation grapples with the deep levels of racial inequity in our society.

Nationally known activist Andraea Lavant, who speaks nationally on the topic of race, disability and oppression, notes that people who live at the intersection of race and disability have been overlooked, not only in the narrative of disability history but in the contemporary disability rights movement.

To address this absence, the Western Pennsylvania Disability History and Action Consortium has begun to tell their stories. In addition to expanding the historic record, these stories provide a starting point for community conversations about the struggles of people of color who have disabilities, and their inclusion in the broader struggle for racial equality, civil rights, and social justice.

The first set of histories are set for public release in July 2022 and feature five individuals who represent diverse types of disabilities, past eras of disability services, pivotal disability rights movements, and seminal leadership.

These subjects are:

Henry Bell (b. circa 1862-d. c. 1892)

Bell was a deaf child who lived in the Hill District neighborhood of Pittsburgh. His mother was from Arkansas while his father was born in Pennsylvania. Bell became the first student at the Western Pennsylvania School for the Deaf (WPSD), and graduated from the school when he was 18 years old in 1880. Bell became a barber and died in Wellsburg, Ohio. In the 19th century, being both Black and deaf meant being limited in society and in educational opportunities.

According to an article in the Pittsburgh Post-Gazette dated January 19, 1895, Bell arrived at the Sabbath Day School at the Third Presbyterian Church where he was turned away several times by the instructor of the school due to not being able to communicate. Despite continuously being dismissed, Bell returned and was eventually accepted, and invited other deaf children who he befriended to the school. Realizing that Bell and other children like him needed a school to fit their needs, teacher Joel Kerr and other staff embarked on creating the Western Pennsylvania School for the Deaf. Bell’s spirited persistence opened the doors for many other children and laid the foundation for the WPSD.

Milton (“Skip”) Henderson (1961-2019)

Henderson became paralyzed because of a car accident. He became a renowned local and statewide disability rights advocate. He was a board member and later an employee of Three Rivers Center for Independent Living. He served on the statewide Independent Living Council and the City of Pittsburgh-Allegheny County Task Force on Disabilities until his death in 2019. Writing on his online obituary page in 2019, Amy Selders wrote: “Milton fought for the rights of all people with disabilities as if his own life depended on it.”

Henderson was an African American man living with a physical disability; his courage of conviction and responsibility to fighting for the rights of people with disabilities has not been forgotten and continues to inspire many.

Marilyn McKinney (1947-2004)

McKinney worked for the Pittsburgh Public Schools for 30 years, most notably as program officer for the Program for Students with Exceptionalities. She served in the Pittsburgh Branch of the NAACP as the Statewide Assistant Secretary and the Second Secretary. She created a group called African Americans Make-A-Wish, to provide opportunities to children under the age of eighteen with a life-threatening illness. Other community work included the Kingsley Association, the charitable group Freedom Unlimited, and the Greater Pittsburgh Alliance of Black School Educators.

The Pittsburgh Local Task Force on the Right to Education named an award in McKinney’s honor. The award recognizes Pittsburgh Public Schools employees who demonstrate “outstanding commitment and service” to students with disabilities. McKinney was an African American woman who was not only a champion in her community but also for children of color in the disability community.

Florence Reed (b. 1944)

Reed is the founder of Working Women with Disabilities. She served on the Pennsylvania Developmental Disabilities Council. Her tenure included serving as vice-chair of the Council and chair of the Advocacy Committee. Reed is a member of Alpha Kappa Alpha Sorority, Inc., and a graduate of the University of Pittsburgh. Reed’s advocacy began before she became disabled when she worked as a speech therapist for Pittsburgh Public Schools. While having a disability may have changed her life, it also strengthened her resolve.

In her interview with Alonna Carter-Donaldson, Reed said “Disability is not a death sentence. In fact, it’s probably one of the best things that ever happened to me, because it has taught me how to accept people… all people, no matter who they are.” While being both African American and part of the disability community can come with its own set of challenges, Reed inspires women of all backgrounds to be confident and persevere beyond any boundaries.

Maurika (“Rika”) Moore (b. 2001)

Moore is a young adult with epilepsy who graduated from Washington High School (Washington County) in 2021. Her family, including her mother Cicely Moore and her father Ron Moore (Washington High School basketball coach), started a fundraiser called Rika’s Hearts to raise money for the annual Pittsburgh Fun Run/Walk for Epilepsy and to help with Maurika’s medical care. The fundraiser has expanded its outreach to the surrounding community by contributing to various community causes. Rika’s Hearts continues to raise awareness about the costs associated with treatment and to connect communities with much needed resources. Moore is part of the next generation of BIPOC and disabled advocates making profound change across communities.

Alonna Carter-Donaldson is the project scholar for the “Intersection of Race and Disability” project. She leads the research and writing of the histories and will complete a master’s degree in Public History at Duquesne University in 2022. She also holds a bachelor’s in Philosophy and Pre-Law from Carlow University and a master’s in Professional Writing from Chatham University. Among her many professional and volunteer accomplishments is her work as historian for the Edna B. McKenzie Branch of the African Studies Association for the Study of African American Life and History. Carter is a resident of Verona.

Carter-Donaldson’s research on these stories explores questions that lie at the intersection of race and disability, such as:

• What do we need to know about people of color who live at the intersection of race and disability?
• How have people of color led efforts to establish disability rights?
• How has race affected access to treatment or services?
• How have people faced interpersonal or systemic racism and ableism?

Throughout 2022 and beyond, Carter-Donaldson will share the project’s first five stories at community gatherings and in a variety of media. An initial presentation of the stories was held On May 6, 2022, at the Envision Conference sponsored by the Western Pennsylvania School for the Blind.

A community advisory committee guides this storytelling project. Members are:

• Dr. Diego Chaves-Gnecco, Developmental-Behavioral Pediatrician; Director, Salud Para Niños (“Health for the Children”) bi-lingual clinic
• DaNia Childress, Associate Curator, African American History, Heinz History Center
• Melva Fair, Executive Director, CLASS Community
• Dustin Gibson, Access, Disability and Language Justice Coordinator, PeoplesHub; Member, Policing in Allegheny County Committee
• Chaz Kellem, Program Manager, Enterprise Equitable Health Institute; Member, Pittsburgh Human Relations Commission; President, Achieva Board of Directors
• Michelle Walker, Founder of Lend an Ear Consulting
• India Scott, Self-advocate

Major funding for the effort comes from the “Race and Disability” initiative of the FISA Foundation. According to Executive Director Kristy Trautmann, “FISA Foundation is incredibly proud of the work of the Western PA Disability History and Action Consortium and its commitment to elevating the voices and stories of people of color with disabilities. This initiative will spotlight true heroes who fought for justice, changed the way disability is perceived, and helped to establish fundamental civil rights. Their stories will help us all to better understand the impact of racism and ableism and will inspire us to work for reform.”

The Western Pennsylvania Disability History and Action Consortium, founded in 2015, preserves and honors the historic struggle of people with disabilities to attain human and civil rights – and to share the lived experiences of today – to promote community access, participation, and equal opportunity. The Consortium uses this history—through presentations, media, events, and exhibits—to educate the public about the evolution and significance of existing laws and policies, and to advance disability rights.

For information, to suggest stories for the “Intersection of Race and Disability” project, or to schedule a presentation by project scholar Alonna Carter-Donaldson, visit wpdhac.org, call 412-204-7199, or email info@wpdhac.org.

Amani D. Echols earned her MPH within the University of Michigan’s Department of Health Management and Policy. Currently, Amani is a Behavioral Health Policy Fellow at the Association of Maternal & Child Health Programs (AMCHP). Outside of work, Amani is a trained pregnancy loss and abortion doula who volunteers her time as a case manager at the DC Abortion Fund (DCAF). The DC Abortion fund makes grants to pregnant people in DC, Maryland, and Virginia and those traveling to these jurisdictions who cannot afford the total cost of an abortion. The content in this article is the opinions of Amani and is not associated with AMCHP or DCAF.

JLD: Amani, given the possibility of the U.S. Supreme Court overturning Roe v. Wade, what do you anticipate being the most significant consequences regarding “choice” for Black women in particular and women in general?

ADE: Often, choice is conflated with opportunity. However, RJ focuses on “access” and not “choice,” and Roe v Wade is a perfect example of this critical distinction. Roe v Wade and Planned Parenthood v. Casey protect a person’s decision to terminate a pregnancy as a constitutional right until fetal viability (about 23-24 weeks). That said, Roe v Wade never guaranteed people meaningful access to abortion and to exercise their rights. For example, states have enacted laws such as waiting periods and regulations against abortion providers (also known as TRAP laws) that prevent access to timely and essential abortion care. Additionally, many people live in counties with no abortion provider. These barriers to access are exacerbated for people with lower income and in southern states where Black people are concentrated in.

In sum, repealing Roe v Wade would eliminate people’s right and access to abortion. The Turnaway Study outlines the significant adverse health and social consequences of carrying unwanted pregnancies to term. Pregnancy and childbirth are way more dangerous than abortion, with a greater likelihood of morbidity and mortality. Compared to other industrialized nations, the U.S. has the worst maternal health outcomes and is experiencing a Black maternal health crisis. For this reason, it is especially concerning that Black people, in particular, will be forced to give birth in the U.S. Furthermore, the social consequences of carrying an unwanted pregnancy to term include financial stressors (especially the concern of adequately providing for existing children), inability to pursue specific career/life goals, and being connected to an abusive partner. 

Another major consequence of overturning Roe v Wade is the criminalization of people who have an abortion, miscarriage, or stillbirth. In the media, there is rhetoric that people will go back to the “old days” of carrying out dangerous abortions in secret; however, these are tropes that stigmatize Black and Brown people. In today’s modern age and with access to medication abortion (the abortion pill) for up to 12 weeks, people will likely be able to access a safe abortion in states where it is legal and illegal. (Much like how illegal substances are found all over the country). That said, people could be penalized and incarcerated for having a medicated abortion, which is the greatest concern to many activists. Incarceration is never the social or health solution.

Lastly, overturning Roe v Wade can make vulnerable other constitutional rights built off Roe’s precedent and the establishment of the right to privacy (e.g., Griswold v. Connecticut - the right to marry whoever you’d like). 

JLD: In your bio, you mentioned volunteering at the DC Abortion Fund (DCAF). Can you share about your experience at DCAF?

ADE: Great question! I love sharing about the work that I do and am so passionate about. First, I’d like to make it clear that I am very much pro-abortion. People often say, “nobody is pro-abortion, they are only pro-choice.”  Unequivocally, I can say that is false. I am pro-abortion and I think it is important to not shy away from saying the word abortion…abortion, abortion, abortion. There is too much stigma around abortion despite it being so common. Everyone loves someone that has had an abortion. (These conversation cards are a tool to guide crucial dialogues about abortion and reduce stigma).

To play a larger role in this issue, I completed a Pregnancy Loss and Abortion Doula Training. As a pregnancy loss and abortion doula, my role is to offer physical, mental, and emotional support before, during, and after an abortion. I decided to take my training and new knowledge to DCAF. I am a volunteer Case Manager at DCAF. In this position, I answer phone calls from people seeking an abortion but cannot afford the total cost of the surgical or medical abortion. The organization provides funding based on a funding rubric. I also help individuals find a clinic near them, and connect them to practical support organizations (e.g., transportation, lodging, escorts, and resources for houselessness and domestic violence). On a daily basis, I work with other local funders to ensure that patients' co-pays are as close to $0 as possible. Roughly, I receive 5-10 calls per day and work 3-5 day-long shifts.

JLD: Amanda Gorman recently presented 8 reasons to stand against abortion bans.  Specifically, she said, “When the penalty for rape is less than the penalty for abortion after the rape, you know this isn’t about caring for women and girls. It’s about controlling them.

1. Through forcing them into motherhood before they’re ready, these bans steadily sustain the patriarchy, but also chain families in poverty and maintain economic inequality.

2. Pregnancy is a private and personal decision and should not require the permission of any politician.

3. For all time, regardless of whether it’s a crime, women have and will always seek their own reproductive destinies. All these penalties do is subdue women’s freedom to get healthy, safe services when they most need them.

4. Fight to keep Roe v. Wade alive. By the term ‘overturn Roe v. Wade‘, the main concern is that the Supreme Court will let states thwart a woman’s path to abortion with undue burdens.

5. One thing is true and certain: These predictions aren’t a distortion, hypothetical, or theoretical. Women already face their disproportion of undue burdens when seeking abortions. If the sexes and all people are to be equal, abortion has to be actually accessible and not just technically legal.

6. Despite what you might hear, this right here isn’t only about women and girls. This fight is about fundamental civil rights. Women are a big part of it, but at the heart of it are freedom over how fast our families grow goes farther and larger than any one of us. It’s about every single one of us.

7. This change can’t wait. We’ve got the energy, the moment, the movement, and the thundering numbers.

Would you please provide your final remarks as well as anything you care to state about Gorman’s above remarks.

ADE: Gorman’s response is complete and thorough. I’d like to add to this reflection via a poem I wrote the week of the leaked SCOTUS opinion.

There is More to Life than Being Alive

I must be violated to have autonomy over my body.

I Must B. Violated  to choose my reproductive health care.

I must be violated, raped, and near death, To make a decision about MY body.

Make it make sense!

No reason is needed. Fuck them kids is plenty.

Fuck them kids is the US mantra for black, brown, queer, disabled, immigrant, and lower-income people.

The same people who forced us to be sterilized as a form of eugenics want us to carry to term.

The contradictions.

I can choose to wear a mask to protect me and you but cannot choose my reproductive health care.

Abortion access, essential health care, is being restricted during a maternal mortality crisis.

Make it make sense.

I am valued for my perspective until it’s too progressive.

The contradictions don’t stop.

We won’t stop!

JLD:  Amani, your responses too are complete and thorough.  I sincerely appreciate the informed commitment you bring to your work.

Jack L. Daniel

Co-founder, Freed Panther Society

Contributor, Pittsburgh Urban Media

Author, Negotiating a Historically White University While Black

May 31,  2022

The Black Women’s Policy Center will host a Health & Wellness Brunch fundraiser from 11 a.m. to 2 p.m. June 18 at the Triveni Center in Monroeville. Proceeds from the event will support its mission to be a leading source for Black women’s voices by empowering them through policy and advocacy work – with the goal of transforming the Greater Pittsburgh region into a place where Black women and girls won’t just survive but will thrive.

There will be a variety of programs centered on physical and mental health, wellness and self-care. The schedule includes a panel discussion with Black female therapists who will discuss mental health vs. mental illness; a yoga presentation by YogaRoots On Location founder Felicia Savage Friedman and a presentation by featured speaker Lydia Glaize from Atlanta. Attendees also will learn self-care tips and have access to free health screenings. Additionally, there will be time for connection and networking, chair and hand massages, food, prizes and giveaways.  

“Black women are the backbone of the Black community and typically put everything and everybody before themselves. The Health & Wellness Brunch is providing them with an opportunity to practice self-care, which is vital to our overall health and well-being,” says Rochelle Jackson, founder and director of the Black Women's Policy Center. “With this brunch, we want the women to have some good food and fellowship with other women, all while being enriched with knowledge and tools for maintaining good mental health. Most importantly, we are striving to remove the stigma attached to mental health and normalize it as a part of overall health and well-being.”

Tickets are $50 and can be purchased at blackwomemspolicycenter.org. Sponsorships and advertising opportunities also are available.