Category: Right to Health and Public Health

The Treatment of People with Disabilities in Institutional Care Settings in Brazil

 

A flag of Brazil flowing in the wind
Image 1: Flag of Brazil. Source: Yahoo! Images

Overview of the Issue 

In Brazil, thousands of children and adults with disabilities are confined to institutions for people with disabilities, facing widespread neglect, abuse, and isolation. Designed ostensibly to provide care, many of these institutions have instead devolved into detention centers where individuals are deprived of their autonomy and dignity. Reports from Human Rights Watch reveal the harrowing conditions experienced by people with disabilities in these facilities, underscoring the urgent need for systemic reform to safeguard their basic rights.  

One relevant case is that of Leonardo, a 25-year-old man with muscular dystrophy who has lived in a residential institution since he was 15. His mother, unable to care for him due to a lack of adequate support, was left with little to no choice. Like many others, Leonardo shares cramped quarters with multiple residents, with minimal privacy or control over his daily life. There are very few meaningful activities available for him to partake in, and he has seemingly no apparent opportunity to participate in society as an autonomous individual, mirroring the experiences of countless other residents across Brazil’s institutions.  

Causes of Institutionalization  of the Care for People with Disabilities 

The institutionalization of the care for individuals with disabilities in Brazil is shown through several interrelated systemic issues. First, the lack of adequate support for families plays a significant role. The government offers limited resources, and financial assistance programs, such as the Benefício de Prestação Continuada (BPC), often fail to fully meet the comprehensive needs of individuals with disabilities, which include therapy, assistive devices, and accessible housing. Without meaningful support systems, families may feel they have no alternative but to rely on institutional care.  

Brazil’s legal and systemic framework also plays a crucial role. Guardianship laws that remove legal capacity from individuals with disabilities mean that many residents in institutions cannot consent to their placement. This lack of autonomy, combined with the stigma of ableism, creates an environment where people with disabilities are treated as passive recipients of care rather than individuals who should have rights and preferences. Public perception remains rooted in ableist attitudes, which continue to limit access to inclusive services and resources.   

The COVID-19 pandemic exacerbated these disparities, intensifying existing challenges for people with disabilities in Brazil’s institutional care settings. This revealed vulnerabilities in both healthcare access and living conditions. Individuals with disabilities were disproportionately affected by the virus due to several factors, including pre-existing health conditions, limited access to adequate healthcare, and cramped, unsanitary living environments within institutions. These conditions not only increased infection rates but also made it difficult to implement preventive measures, such as social distancing and proper sanitation.   

Hospital Beds. Source: Yahoo! Images
Image 2: Hospital Beds. Source: Yahoo! Images

Problems Within Institutions for People with Disabilities 

The institutional care setting for People with Disabilities in Brazil fails to meet even the most basic standards of dignity and human rights. Living conditions in many of these institutions are deplorable. Reports from Human Rights Watch describe facilities that resemble prisons more than care centers. Physical restraints, such as tying residents to beds or sedating them, are surprisingly common. Such practices not only prevent individuals from engaging in any form of meaningful activity, but also contribute to a host of physical and psychological traumas.  

Isolation is another significant, impactful issue. Many residents are confined to their beds or rooms for extended periods, with little to no engagement in social interaction or personal development. Children, specifically, suffer due to the lack of educational and recreational activities, which then stunts their intellectual and emotional growth. This isolation leads to further stigmatization and marginalization, unfortunately reinforcing the perception that people with disabilities are separate from society and should be hidden from view, whether intentionally or not.  

The lack of oversight and enforcement of existing laws allows for egregious human rights abuses to go unchecked. In many cases, individuals are institutionalized unlawfully, deprived of family connections, and subjected to a lifetime of neglect. Children who enter these institutions often lose contact with their families permanently, which can lead to long-term emotional trauma and a deep sense of abandonment.  

Access to healthcare for people with disabilities in Brazil also remains alarmingly inadequate. Despite the legal frameworks designed to protect their rights, physical and financial barriers to healthcare still exist, compounded by a lack of training among healthcare providers to address the specific needs of people with disabilities. These gaps contribute to a high incidence of preventable health complications and reduced life expectancy.   

Efforts Toward Reform  

While Brazil has established a strong legal framework for the rights of people with disabilities, including the ratification of the Convention on the Rights of Persons with Disabilities (CRPD) and the enactment of the 2016 Law on Inclusion, the enforcement and practical implementation of these laws remain lacking in change. Legal rights exist on paper, but without mechanisms to enforce them, individuals with disabilities continue to suffer abuse, neglect, and loss of their freedoms.  

United Nations Committee on the Rights of Persons with Disabilities and many advocacy organizations have called on the Brazilian government to transition from institutional care to community-based services that prioritize individual autonomy and family support. These efforts encourage the development of small, inclusive residences and group homes to reduce the dependence on large-scale institutions. Although some of these programs have been started up, they fall short of ensuring true independence and often lack the necessary resources to fully support residents in their transition to independent living.  

Efforts to improve healthcare access are underway, focusing on providing disability-specific training to healthcare providers and addressing financial and physical accessibility challenges. These interventions are essential to improving the health outcomes of individuals with disabilities and to fostering an inclusive healthcare environment that treats people with disabilities as valued members of society.  

Looking Ahead  

The treatment of people with disabilities in institutional care settings in Brazil reveals a profound humanitarian crisis that requires focused attention. The combination of insufficient support systems, societal stigma, and legal challenges results in an environment where individuals with disabilities are denied their rights, autonomy, and dignity. While Brazil has made some strides toward recognizing and enshrining the rights of individuals with disabilities, significant gaps remain in the enforcement of these rights and in the availability of community-based alternatives to institutionalization.  

Addressing these issues calls for a multifaceted approach, including policy reform, enhanced support for families, and the development of inclusive, community-based care. By prioritizing the rights and voices of individuals with disabilities, Brazil can move toward a more just and humane society where all individuals are treated with respect, dignity, and equal opportunity.  

 

American Psychiatric Abuses: Residential Treatment Facilities

Content warning: this blog will include mentions of child abuse, child self-harm, child suicide, and child sexual abuse.

Psychiatric Residential Treatment Facilities (PRTFs) are in-patient institutions that provide inpatient psychiatric care to people under the age of 21. They are a common form of short-term psychiatric care for young people. Children do not choose to be committed to these facilities, and they do not want to be. Two children said they were being treated like animals. Many said, “I don’t feel safe.”

Physical Abuse 

Children in PRTFs are extremely vulnerable due to both psychiatric issues and the nature of living in institutionalized care. Facilities are often understaffed, leading to minimal supervision and increased opportunities for abuse – by staff and other children.

 

A former child group home resident and his mother.
Image 1: A former child group home resident and his mother. Source: Yahoo Images

Staff members at PRTFs have frequent opportunities to abuse their charges. A staff member at Cumberland Hospital in Virginia “poured scalding water on a non-verbal 16-year-old.” An 11-year-old boy from Arkansas was pushed down, had his hair pulled, and had a staff member place her foot in his back. A staff member at Devereaux Brandywine in Pennsylvania was found guilty of assault after she “punched and kicked a 14-year-old in the head, face, and body until the child was unconscious.” In December 2023, a staff member at a facility in Arkansas told a police officer, “I went in there, and I basically twisted his ear real hard in order to get him off the bed, which we’re not supposed to touch them.” A staffer at a facility in South Carolina “hit the child twice, including punching the child in the head.” At a Devereux facility in Viera, Florida, a staff member hit a boy on his neck, leaving marks. It is sad that state governments pay pay thousands of dollars daily for children to be abused by their caretakers.

Further, due to apathy and unawareness from staff, children are also able to abuse other children in PRTFs. At Riverside Hospital in Virginia, a child was “repeatedly stabbed by another child.” At North Star Behavioral Health in Alaska, after two children were accidentally placed in seclusion together, one child gave the other a bloody nose. At the same Alaska facility, a child was “punched, slapped in the eye, and kicked by other children.”

None of these instances of abuse were reported to the children’s guardians in a timely manner. Some parents were never notified.

Sexual Abuse 

A caregiver at Lighthouse Care Center of Augusta, in Augusta, Georgia, was arrested and convicted of child molestation. An employee at a facility in Alabama was sentenced after sexually abusing a 13-year-old boy she should have been caring for. A man working at a facility in Chicago was charged with three counts after sexually assaulting minors in his care. A Utah man pled guilty to sexually abusing three male students at a residential school he worked at.

Staff members also allow sexual abuse to occur between children. At Devereux Brandywine in Pennsylvania, a 13-year-old boy asked not to be placed in a room with an older boy he was afraid of. They were placed as roommates, and “the older boy forced the younger child to perform oral sex on him on three successive nights in a walk-in closet.” This is one of many equally disturbing instances of staff enabling sexual abuse at facilities. One facility in New Mexico closed partially due to “the unchecked spread of HIV among patients” – something that brings to mind the hepatitis experiments of the 1950s, 1960s, and 1970s at Willowbrook State School, an infamous institution in New York.

A postcard from Willowbrook State School.
Image 2: A postcard from Willowbrook State School. Source: Yahoo Images

Neglect and Unsafe Environments 

Staff at PRTFs are often unable or unwilling to prevent children from harming themselves. Disability Rights Arkansas, the Protection & Advocacy Agency for Arkansas, reported that one girl “still had access to items to cut her arms. There were numerous new scars over her old scars.” The staff did not care. Another child at the same facility said that she had “used the second stall [with cracked and sharp shower tiles] to self-harm.” The staff did not care. If they had, the children in their care would be safe. A child at Palmetto Pines Behavioral Health in South Carolina “barricaded themselves inside of his suicide watch room…[and] used the plastics piece to cut his neck in an attempt to kill himself, but it was not sharp enough.” The staff did not care. A child at Provo Canyon School in Utah “caused personal injury during self-harm, with wounds that were one and two inches in length… through the fatty tissue.” At Oak Plains Academy in Tennessee, two 15-year-olds overdosed on Benadryl. The mother of one of them said, “I’ll never see her again; I just want justice for her; I just want her story told. And I want – I never want this to happen again to anyone.”

A box of Benadryl.
Image 3: A box of Benadryl. Source: Yahoo Images

Minority Children 

Children who are also members of minoritized groups, especially children of color and LGBTQIA+ children, have even greater difficulties in PRTFs.

According to a Senate report, “[T]he longer an RTF stay, the longer a child is at risk of exposure to harms, including the use of restraints and seclusion, physical and sexual abuse, insufficient education, and substandard living conditions. This risk is heightened for children of color, LGBTQIA+ youth, and children with I/DD (intellectual/developmental disabilities) who are most likely to live in these settings.” Black children are 35% more likely than white children to be placed in institutionalized care facilities.

Cornelius Frederick, a 16-year-old Black boy from Michigan, was killed at a facility in Kalamazoo, Michigan, in April 2020. Seven male staff members restrained Frederick for 12 minutes. The medical examiner ruled his death a homicide – asphyxiation.

In 2018, a gay 16-year-old was attacked while residing at St. John’s Academy, a Sequel facility in Florida. His attacker told him that he “didn’t want a fa***t in the pod.” Disability Rights Washington reported that two “crisis plans” for children residing at PRTFs used incorrect gendered pronouns when referring to the child. In 2020, two transgender girls resided at Sequel Courtland in Courtland, Alabama – a boys’ facility. One girl was being stalked by other residents. She did not feel safe.

Further Information 

For further reading about the kinds of abuses that go on in these facilities, consider reading a blog I wrote in April about group homes. You can also reach out to local representatives about ending or reducing out-of-state institutionalizations, which are harder to investigate than in-state institutions.

The Eradication of Malaria in Egypt: A Triumph for Public Health and Human Rights

When thinking about malaria, we tend to forget its impact across the world. Especially living in the global north, my experience with malaria has been restricted to my coursework; however, the reality of the disease is that it exists and poses a prominent issue in many countries across the world. The illness, spread by a mosquito vector, had over 247 million cases in 2021; this spanned across many regions worldwide, primarily impacting Africa.

In recent years, the WHO (World Health Organization) has worked in many different countries to eradicate malaria and has successfully done so with their WHO Guidelines for Malaria. An example of these guidelines being successful is Algeria, which reported its last case in 2013. However, a recent accomplishment in the world of malaria has been noted, which is the eradication of the disease in Egypt. For decades, Egypt had struggled with the disease and the associated outcomes.

Image 1: Receipt of malaria-free certification in WHO Eastern Mediterranean Region.Source: WHO
Image 1: Receipt of malaria-free certification in WHO Eastern Mediterranean Region. Source: WHO

Malaria’s History in Egypt

The nature of Egypt had made it susceptible to the fruition of the illness. Historically, the disease was tested around the Nile Delta and Upper Egypt, tracing back to 4000 B.C.E. As most of the population was concentrated in these areas, it led to the development of disease impacting millions of individuals. In recent history, the illness has contributed to the fragility of the country, ranging from increased economic losses, inflated healthcare costs, and decreased labor productivity.

The first ever effort to control malaria can be dated to 1950, with the introduction of dichloro-diphenyl-trichloroethane (DDT). This initial intervention was an insecticide that was used to help not only reduce the mosquito population but also address the development of typhus and other insect-borne diseases. However, this intervention resulted in some resistance amongst the community and additional environmental concerns; as of 2001, the intervention was observed as a possible human carcinogen and has since been banned in Egyptian agriculture.

In 1969, the creation of the Aswan Dam posed a new risk for the development of disease, all of which resulted in the need for new interventions. With additional adjustments to the approach against malaria, in the 1980s, the WHO helped push towards the eradication of malaria in Egypt with their eradication program. This program included regions like Africa, the Americas, Asia-Pacific, and the Middle East and Eurasia. This resulted in outcomes such as reducing the number of cases by 300,000 between 1980 and 2010. Though these outcomes are significant, those with limited access to healthcare were still disadvantaged in the global conversation.

Image 2: Doctors in Egypt are conducting malaria tests on elderly patients in rural Egypt.Source: WHO
Image 2: Doctors in Egypt are conducting malaria tests on elderly patients in rural Egypt. Source: WHO

The New Approach to Malaria

Building upon previous interventions, additional interventions have been explored in the past few decades; these have contributed meaningfully to the eradication of malaria in the country. Before mobilizing interventions, it is important to educate communities about what malaria is and develop trust in proposed interventions. The Egyptian government, in collaboration with different NGOs (Non-Governmental Organizations), launched different campaigns that reached communities all across the country; these talked about prevention, symptoms, and where people can find diagnostic centers. These were taught in schools, local community centers, and other locations to ensure that populations were able to access the information needed to become a part of the solution. This resulted in an 80% increase in malaria case reporting in disproportionately impacted areas by 2020.

These education opportunities are coupled with healthcare access and monitoring. By improving the healthcare infrastructure, treatment facilities were able to strengthen their interventions for those impacted by malaria. However, with recent inflation and economic instability in the country, with the support of international supporters, these interventions became even more accessible by being low-cost or even free. With the additional investment into data collection and monitoring systems, the Egyptian Ministry of Health was able to monitor trends in malaria incidence and collaborate with healthcare providers to mobilize and target interventions for those who need them most. With the compounded efforts of treating and monitoring malaria, strides were made to help understand the spread of malaria in the country.

Beyond education and monitoring, it is valuable to identify interventions that would be accessible to the population. These interventions must be easily understood to ensure they are efficacious. Vector control is noted to be central to Egypt’s strategy. Leveraging the use of insecticide-treated bed nets was the most prominent intervention; by 2019, 3 million of these nets had been distributed to reduce the incidence of malaria, especially in high-risk areas. This, coupled with indoor spraying, helped reduce malaria cases by 90% in over 2 decades.

Malaria Eradication is a Victory for Human Rights

As outlined in the International Covenant on Economic, Social, and Cultural Rights, the right to health is fundamental to human existence. By working to eradicate malaria in the country, Egypt has made strides to fulfill this right for its citizens of all socioeconomic classes.

Egypt’s victory brings hope to the fight against malaria; not only can public health interventions align with human rights, but they can create a sustainable model for health equity. Many countries in the global south are in a place that Egypt was in not too long ago; as global communities begin to face the amplification of health issues, Egypt’s framework and history of eradication can be seen as a success and applied to other countries.

Now that malaria is off the docket of issues Egypt faces, it is not time to focus on addressing other inequities the country is facing. As health equity is improved in the country, issues such as mental health, maternal and child health, and non-communicable diseases can be addressed with the utmost efficiency, helping improve outcomes in the country.

 

The Death Penalty in the US: Legalized Murder?

On September 24, 2024, the state of Missouri executed an innocent Black man. Why did they kill him? 

Marcellus Williams was convicted and sentenced to death for murdering Felicia Gayle. There was no physical evidence linking Williams to her murder: fingerprints, footprints, hair, and DNA found at the crime scene did not match Williams. The only evidence against Williams was testimony from two witnesses whose accounts were inconsistent and unverifiable. Gayle’s family favored life imprisonment. The county prosecutor favored life imprisonment. Only Missouri’s Attorney General wanted Williams executed – and he got his wish. 

Williams was innocent of the crime for which he was executed. He never had a fair trial. The prosecution struck 6 of 7 Black jurors, one of whom was rejected “because he looked too much like Williams.” Missouri knew they were executing an innocent man – and they did it anyway. 

History of the Death Penalty in America 

Capital punishment has been a part of the American legal system since before the United States was a country. The first person executed in the British colonies was George Kendall, who was executed by firing squad for mutiny in 1608. By the early 1900s, public support for the death penalty was beginning to wane, and some states abolished the practice. 

Utilizing capital punishment was briefly illegal nationwide. The 1972 Supreme Court Decision Furman v. Georgia ruled that existing death penalty statutes were discriminatory and therefore unconstitutional. That lasted until 1976, when the Court ruled in Gregg v. Georgia that Georgia’s updated death penalty statute was constitutional, and executions resumed. Since 1976, 1,601 people have been executed. Today, only 21 states still have the death penalty, and only ten have executed people in the last decade. 

Methods for capital punishment have varied greatly over the last two centuries. Early in American history, the most common were firing squad and hanging. Over time, hangings have become associated with lynchings. Despite that history, in 2023, a Tennessee lawmaker proposed that “hanging by a tree” be used as an alternative method of execution in the state. In 1890, the first person was executed with the electric chair, which was the most common method for several decades until lethal injection became more popular after its first use in 1982.

A white room with a gurney with several thick straps used for restraining prisoners.
Image 1: A white room with a gurney and several thick straps was used to restrain prisoners. Source: Yahoo Images.

Lethal injection has faced challenges in recent years for a few reasons. Drug manufacturers do not want to be associated with homicide – and thus refuse to sell the required drugs to state governments – and medical professionals refuse to administer the medicines. Instead of medical professionals, correctional workers struggle to find veins and sometimes fail entirely, causing delayed executions. Roughly 3% of executions are botched, and people subjected to botched executions are disproportionately Black – 1/3 of executions nationwide are of Black prisoners, while 1/2 of botched executions are of Black prisoners. Even when not botched, lethal injections have been shown to be less humane than originally believed. The drugs used are painful and cause the lungs to fill with fluid – typically without proper anesthesia. 

Black prisoners are also treated differently immediately before they are executed. Jeff Hood, who has witnessed six executions – three of Black prisoners, three of white – told NPR, “I can definitely tell you that the restraints that I have seen on Black folk have been unquestionably tighter than the restraints that I have seen on white folk.” 

More recently, there has been controversy over a new execution method: nitrogen hypoxia. The state of Alabama has executed two people – Kenneth Smith and Alan Eugene Miller – by nitrogen hypoxia in the last year. The state had previously attempted to execute both Smith and Miller by lethal injection, but correctional workers were unable to place IV lines in either man over the course of several hours. There is another Institute of Human Rights blog post, published in the fall of 2023, that extensively details execution methods. 

Problems of the Death Penalty

Two of the most common reasons given for keeping the death penalty are deterrence and justice. Justice argues an eye for an eye – that, for some crimes, the only possible form of justice is death. That is a philosophical debate, and one I will not discuss today. Instead, I will focus on the effect of the death penalty on homicide rates – deterrence. Deterrence is the idea that the existence of the death penalty deters crime – it reasons that prospective murderers are logical people who will be less likely to kill others if it will result in their death. 

In 2012, the National Research Council conducted a literature review on studies examining any deterring effects executions – and the general presence of the death penalty – have on homicide rates. They concluded that studies had not yet demonstrated any effect capital punishment has on homicide rates and recommended that the “research… should not influence policy judgments about capital punishment.” 

One of the most powerful arguments used by death penalty abolitionists is about wrongful convictions. Someone who is sentenced to life in prison can be released if they are found innocent; that is not so with someone who is dead, such as Marcellus Williams. Wrongful convictions are common; for every eight executions in the United States since 1977, one person sentenced to death was exonerated. 82% of death penalty exonerations are due to official misconduct and 36% of death penalty sentences are overturned. 

Glynn Simmons was exonerated in December 2023 for a crime he did not commit. He spent 48 years in prison. The state knew when he was convicted in 1975 that Simmons was innocent; he was in Louisiana when the crime was committed in Oklahoma. Despite that, it took almost 50 years – 2/3 of Simmons’ life – for him to finally be exonerated. Imprisonment is reversible. Death is not.

A broken chain.
Image 2: A large broken chain. Source: Yahoo Images

What Can Be Changed? 

Activists have worked for decades to reform or eliminate the death penalty. Two organizations that have been involved in numerous exonerations are the Innocence Project and the Equal Justice Initiative. Both organizations provide legal aid to innocent prisoners. Other ways to support change include petitioning state and federal legislators to end or reform the death penalty.

Understanding Vaccine Diplomacy in the Case of COVID-19: A Global Approach to Health EquityUnderstanding Vaccine Diplomacy: A Global Approach to Health Equity

In the landscape of global health, vaccine diplomacy has emerged as a compelling strategy, melding healthcare initiatives with international relations. This approach is pivotal in the ongoing battle against infectious diseases, most recently the COVID-19 pandemic. Vaccine diplomacy involves countries utilizing their surplus vaccine supplies to forge diplomatic ties, enhance global influence, and foster goodwill. This is often done in partnership with private pharmaceutical entities and public health organizations. However, while aiming to address the urgent need for equitable vaccine access worldwide, vaccine diplomacy raises critical questions concerning human rights and health equity on a global scale.

Evolution of Vaccine Diplomacy

The vaccine diplomacy has existed long before the COVID-19 pandemic, but we noted its increased influence during this unique time. Nations like the United States, Canada, and the United Kingdom, possessing robust vaccine manufacturing capabilities, sought to leverage their surplus doses as a means of geopolitical influence. For example, the United States promised to donate over 1.1 billion vaccines by 2023. This approach gained momentum as vaccine shortages persisted across continents, exacerbating health inequities, especially among women and children, and prompting a response beyond national borders.

 

Photo of vaccine vile.Source: Flickr
Photo of vaccine vile. Source: Flickr

Examples of Vaccine Diplomacy

Vaccine diplomacy has manifested in diverse forms. China and Russia have actively supplied their respective COVID-19 vaccines, including Sinovac, Sinopharm, and Sputnik V, to various nations as part of aid packages or through bilateral agreements. India, known for its significant vaccine production capacity, contributed doses through the COVAX initiative and direct donations to neighboring countries and beyond. These mobilization efforts are valuable to the development and growth of vaccine diplomacy through the lens of aid. This improves the well-being of marginalized groups and pushes national interests abroad. 

Photo of kids lining up to get vaccinated.Source: Flickr
Photo of kids lining up to get vaccinated. Source: Flickr

Human Rights and Vaccine Diplomacy

At its core, vaccine diplomacy intersects with human rights, particularly the right to health. Access to vaccines is considered a fundamental human right, and ensuring equitable distribution is paramount to providing equal protection against COVID-19. Yet, the disparities in vaccine access have sparked concerns about the violation of this right for marginalized and vulnerable populations globally. Several countries have taken commendable steps to uplift vaccine diplomacy and do their part to make interventions more accessible. The United States pledged substantial donations of vaccine doses through COVAX and direct allocations to nations facing acute shortages, aiming to bolster global vaccine access. Countries like Sweden and Norway have also committed funds to support COVAX’s efforts in distributing vaccines to low-income nations.

To enhance the accessibility and efficacy of vaccine diplomacy, countries must prioritize transparent vaccine-sharing mechanisms, equitable distribution plans, and fair allocation strategies. Greater collaboration among nations, regulatory transparency, and a resolute commitment to multilateralism are essential elements for ensuring broader vaccine access. This can be done through working alongside pharmaceutical companies, local organizations, and many other avenues.

 

How to Get Involved

Individual engagement plays a pivotal role in advancing the cause of equitable vaccine distribution. Advocating for fair vaccine distribution, supporting initiatives that promote vaccine access in underserved communities, and raising awareness about the critical importance of global health equity are impactful ways for individuals to contribute. Engaging with policymakers, supporting organizations dedicated to vaccine distribution, and staying informed about global health issues are pivotal steps toward effecting change.

 

Vaccine diplomacy stands at the nexus of opportunity and challenge in addressing the global vaccine disparity. While it serves as a conduit for international cooperation, its success hinges upon ensuring vaccines reach those most in need, aligning with the fundamental principles of human rights and health equity.



Group Homes for People with Disabilities are Harbors for Abuse

By James DeLano

“I don’t feel safe here.” 

That statement was uttered repeatedly in interviews performed by the Alabama Disabilities Advocacy Program (ADAP) with residents of Sequel Courtland, a psychiatric group home for boys in Courtland, AL. The residents of the home reported consistent patterns of abuse. One boy “reported witnessing a staff member lifting another resident up by the throat and slamming him to the floor.” Multiple boys reported being slammed into the ground and not being allowed to receive medical attention.

Three people standing outside the door of a group home
Group homes often house only a few people. Source: Yahoo Images

Sequel Courtland is a facility for boys. At the time the letter was sent in July 2020, there were “at least two transgender girls inappropriately placed at Courtland,” one of whom reported that she “is constantly touched, smacked on the butt” and that “they [other residents] try to watch me dress.” 

At a Sequel facility in Owens Cross Roads that was part of the same investigation, “male staff repeatedly enter girls’ bedrooms and put them in violent containments.” At the same facility, residents were frequently ordered to sleep in common areas rather than in their bedrooms as a punishment. Staff also failed to report or make any attempt to prevent suicide attempts. 

Sequel Montgomery practiced “Group Ignorance” as a punishment. Group Ignorance, or GI, involved staff and other residents completely ignoring the person being punished. The isolated person was unable to interact with peers in any way; just being within ten feet of another resident would be considered a violation. The facility’s then-current guidelines read that “They can participate with peers only during direct billable services—BLS and therapist-led group therapy.” One resident reported attempting suicide specifically because of the stress of being isolated under GI. 

Sequel Tuskegee utilized a “time-out room” for up to days at a time as a means of controlling residents. There was no mattress present in the room; boys were required to move the mat from their bedroom into the confinement area. It also lacked a toilet or sink. Because of that, residents were forced to either try – and often fail – to gain staff’s attention to use the restroom or, failing that, “urinate in the corner of the room and clean it up later.” 

A Sequel group home in Ohio was also investigated by that state’s protection & advocacy (P&A) agency,  Disability Rights Ohio. They reported that one of the children living at that home told them he was “Put in a hold so strong that it almost broke my arm; they kept holding me tighter and tighter; my hands and arms were tingling and going numb.” Another said, “I don’t feel safe.” 

Abusive group homes are not exclusive to Sequel. Group homes are often abusive, no matter what company owns them. 

At a residential facility called Canyon Hills Treatment Facility in North Carolina, “at least one-third of residents lost weight after they were admitted for treatment.” Canyon Hills’ residents were children who should still have been growing. When residents asked for more food, their portions were cut even further. At another facility in North Carolina called Anderson Health Services, “Ten staffers at this facility have been charged with child abuse since 2017.”

At a group home in California, a woman with severe autism often went out on rides in the home’s van. She occasionally tried to stand up, after which “the staff member driving would slam on the brakes and, like, brake check her.” That practice caused bruises. The same woman, who had harmed herself in the past, was frequently left alone and unsupervised, during which time she banged her head into the wall, leaving large holes in the process. 

Neglect in Group Homes 

Many group homes are chronically understaffed. That, along with low pay and a lack of care from and proper training for staff, collectively leads to preventable injuries and death. 

A woman choked to death at a New Jersey group home in 2017. She was unable to swallow large pieces of food; everything needed to be in small pieces, and she required supervision while eating. Two years prior, she had been taken to the hospital after choking on a bagel – an incident her family was never told about. 

As a result of poor staffing, a resident of an Oklahoma group home named Terry Brown was strangled by his roommate. There was only one staff member on duty; when she intervened, she was attacked as well and “watched Terry’s body turn purple, go limp and fall lifeless.” At a group home owned by the same company, a resident drowned in 2011 on an outing. He was supposed to be wearing a life jacket. When he died, there was no life jacket for him to wear. 

One Texas caregiver worked for almost 70 hours straight while caring for two disabled women; her only breaks were a short nap and a trip to run errands. She is the only caregiver for two women who require constant care and supervision. She was clocked in from 8:16 Tuesday morning to 10:08 Friday morning, and only four hours after clocking out she returned for another 19-hour shift. She said that, “I’m always here. The only thing I do for fun — besides sleep — is go to church, read my Bible, hang out with my family.” The only occasional help she has comes from equally understaffed and exhausted workers at other group homes. For her work – providing constant, necessary care to two people – she makes $9 per hour, which is a wage that is not uncommonly low and serves as one of many reasons group homes are so often neglectful.

At the previously mentioned Sequel group home in Courtland, Alabama, ADAP investigators found blood and feces on windows and floors. The same investigation had residents report insufficient and inadequate food and water, nonexistent education and medical treatment, and that “there’s mold in the showers, and rats and roaches in our bedrooms and the hallway.” 

Physical and Chemical Restraint 

Mental healthcare professionals generally agree that restraining someone who is in crisis only makes things worse. Many group homes do it anyway.

As part of the previously mentioned investigation into Sequel facilities in Alabama, numerous instances of inappropriate restraint were reported. A report compiling the results of several investigations by various state Protection & Advocacy Agencies (P&As) reads about an Alabama group home, “One boy described his head being caught on a nail in the wall during a restraint; another said he was picked up and slammed on his stomach onto the concrete. A boy who had visible gashes to his head said that facility staff had slammed him against a wall the previous night.” 

In 2020, a 16-year-old boy was physically restrained by several staff members at a Sequel facility in Kalamazoo, Michigan, for twelve minutes. They used their body weight to restrain his torso and legs. He died two days later due to being asphyxiated while he was restrained. His name was Cornelius Frederick. In the 18 months preceding his death, emergency services visited the facility 237 times. 

A group home in Carlton Palms, Florida has yet another pattern of restraints being used. Those restraints include cuffs, residents being strapped to chairs or being tied down, and straitjackets. These restraints directly cause physical harm – broken bones, bruises, and broken teeth, to name a few. 

A box of Seroquel in front of a laptop.
A box of Seroquel in front of a laptop. Source: Wikimedia Commons

Seroquel is an antipsychotic drug that is approved by the FDA to treat some severe mental illnesses. Seroquel does not have an immediate effect. It is not approved as a form of chemical restraint or as a treatment for insomnia or anger management, among other off-label uses, but that is what it has been marketed and used for. Disability Rights Tennessee, the P&A agency in Tennessee, reported that “In one facility, staff increased a child’s Seroquel dosage from 50 mg to 300 mg as an emergency intervention.” The same problems occurred in North Carolina; “staff had administered Seroquel numerous times to a child who did not have any diagnoses that would indicate use of antipsychotics.”

What Is Being Done? 

Several of the group homes mentioned above have shut down since investigations into them concluded, including some Sequel group homes. Sequel changed its homes’ names to Brighter Path due to the negative press. In other cases, states have stopped sending children to abusive group homes or, rarely, revoked their licenses. Other group homes, while not yet shut down, are no longer receiving new residents or are being downsized. 

The Unrecognized Effects of the Opioid Crisis on Native Americans

by Abigail Shumate

A Brief History of the Opioid Crisis

Beginning in the late 20th century, opioid prescription rates skyrocketed in shocking numbers, and in just over ten years, opioid sales quadrupled. With the introduction of OxyContin into everyday life and medication sales, an opioid that was falsely advertised as non-addictive, as well as pill mills across the United States, millions of people fell into a deadly addiction. As people lost access to prescription opioids, they often turned to more illicit drugs, such as heroin. This was worsened by the prices of heroin going down, making it much easier for people to afford large quantities of the drug. The use of heroin is often looked at as the second wave of the drug crisis, and heroin deaths surpassed prescription drug deaths in 2015. The third wave of the opioid crisis is where we currently reside, and it is characterized by overdose deaths related to synthetic opioids, such as fentanyl.

Connection to Native Americans and Alaskan Natives

The opioid epidemic has been heavily discussed in the past few years; however, it has been occurring for even longer. Opioid usage affects most groups; however, its large-scale detriment to minority race and ethnicity groups is frequently ignored. Native Americans and Alaskan Natives (here referred to as NA/AN) are disproportionately affected by the opioid crisis, and this discrepancy is ignored by many critical groups.

American Indians have the highest drug overdose death rates, and these rates are not stagnant. The CDC reports that overdose deaths have increased by 33% within the last several years. This pattern of drug abuse and overdose is not isolated to adults, as NA/AN youth also struggle with the use of unauthorized prescription painkillers, with some reports showing as many as 11% of high school students using painkillers without explicit orders from their doctors.

There are many factors that cause NA/AN groups to be affected more heavily than other groups, and these include historical trauma, lower educational attainment, lack of easy access to healthcare, housing problems, poverty, unemployment, violence, and mental health issues. In this post, I will choose to focus on two main reasons: lack of easy access to healthcare and mental health issues caused by lost connection to culture.

Health Disparities in NA/AN Communities

NA/AN groups have serious healthcare inconsistencies that must be addressed for these communities to gain adequate support during the opioid crisis. The Indian Health Service (IHS) is a group that provides care to over 2.2 million people, but it is severely underfunded by Congress. As this is one of the main organizations providing healthcare access to NA/AN groups, this underfunding affects millions of lives. To put these funding issues in perspective, funding would have to almost double to match the degree of care provided to federal prisoners, and it would have to increase by even more to equate to Medicaid benefits.

Alternate Text: Image of white OxyContin bottle with white pills laid out in front. Source: Flickr
Image of white OxyContin bottle with white pills laid out in front. Source: Flickr

Poor healthcare consistently results in the treatment of symptoms instead of causes, and, unfortunately, this means the prescription of opioids. Whether injuries occur from manual labor, physical activity, or driving accidents, NA/AN individuals are more likely to be treated with opioids as opposed to more effective means of treatment, such as physical therapy. Poor healthcare aligns directly with low-quality insurance or no insurance at all, and opioids are more likely to be prescribed in areas with uninsured people.

Mental Health and Cultural Disconnect

The traumatic history of Native American groups has a massive impact on these overdose rates, as forceful deprivation from culture leads not only to issues such as inadequate healthcare and poverty, but also mental health issues, one cause of opioid treatment, these being direct pathways to opioid addictions.

Mental health issues are incredibly prevalent within NA/AN communities, with suicide rates for them being more than double those for the entire U.S. population. NA/AN individuals are also more likely to be diagnosed with anxiety disorders and PTSD. These mental health conditions, when left untreated or inadequately treated, can often lead to drug abuse. The IHS does provide care for mental health and substance abuse issues; however, the already underfunded organization only uses about 10% of these funds to support substance abuse treatment

These mental health issues can be attributed to many things; however, a major force playing into this is the history of trauma amongst Native Americans. This topic could be one if not several, entire blog posts, but here I will attempt to briefly sum it up. It is important to note that there are around 600 federally recognized tribes, so the experiences of NA/AN individuals can vary greatly. One thing most groups share is a prevalent history of displacement and loss of culture. In the late 19th century, the majority of Native American individuals were forced to relocate to reservations or into urban areas. This resulted in a decline in socioeconomic status, which resulted in poor living and working conditions, as well as heightened health issues, both mental and physical.

It is vital to remember that NA/AN groups are underrepresented in major clinical research studies. This results in the general public being unaware of the true extent of issues within these communities. This underrepresentation in research exacerbates the disparities and can easily result in the continuance of the opioid crisis for Native Americans with little to no acknowledgement from major government parties. Another impact of inadequate research is misconstrued statistics, and it is likely that the opioid crisis is worse for NA/AN groups than scholars anticipate, as overdose cases may be underestimated by as much as 35% due to race miscalculations.

Alternate Text: Image of a white hospital room with two bed placed in the center. Source: Flickr.
Image of a white hospital room with two bed placed in the center. Source: Flickr.

 

Creating Change

The first thing that needs to be done in order to improve the worsening opioid crisis in NA/AN areas is to improve funding for the Indian Health Service. The United States Congress must take action and increase funding—the funding in 2022 is less than half of what patients need. With adequate health care, individuals with mental health and substance abuse issues will be able to get the help that they need, and, on the more preventative side, with better care, individuals will be less likely to be prescribed opioids as a substitute for proper treatment.

The second action that needs to be taken is better awareness. There needs to be more research devoted to NA/AN groups, so that we are able to pin down what leads to these heightened addiction statistics. Overall, it is vital for individuals to take personal responsibility and increase their own awareness of the issues. Native Americans have been ignored and mistreated for decades, and this must be remedied in the present.

Mental Illness in U.S. Prisons and Jails

by James DeLano 

“I run the biggest mental hospital in the country.”

That was Los Angeles County Sheriff Lee Baca in 2005. He was referring to the fact that, in 2005, over 2,000 people in the county jail had been diagnosed with a mental illness. That has not changed. Nationwide, between 16% and 24% of incarcerated people have a severe mental illness. In the general population, 4% of people have these illnesses. Prisons are serving as replacements for psychiatric hospitals, but they are not changing to accommodate that.

In the 1840s, people with mental illnesses were generally imprisoned. That was due to the criminalization of many symptoms and a lack of societal acceptance. Although mental disability has not been a legitimate excuse for imprisonment, mental health problems are still significant in today’s prisons.

National Problems 

Nationally, estimates for the percentage of inmates with a severe mental illness range from 15% to 20%. As previously mentioned, the Los Angeles County Jail was described by its sheriff in 2005 as the largest mental hospital in the country. At the Cook County Jail in Illinois, about 1/3 of the incarcerated population has a mental illness. According to the mental healthcare supervisor at the Gwinett County Detention Center in Georgia, the closure of a nearby psychiatric hospital caused the number of mentally ill inmates to skyrocket. In Polk County, Florida, the jail has a mental health unit based on psychiatric hospitals and “immediately put[s] them back on medication because the vast majority of them – the overwhelming majority of them — have decompensated.” In the U.S. Virgin Islands, individuals who were found not guilty of a crime by reason of insanity – that is, who committed a crime but were determined not to be culpable due to a mental illness – are kept in the general prison population rather than being hospitalized. For that reason, the U.S. Virgin Islands has been involved in a class-action lawsuit, Carty v. Mapp, since 1994, one which shows no signs of being resolved.

These situations are exacerbated by the criminalization of symptoms and coping mechanisms of people with mental illnesses. Some people use illegal substances as a means of self-medication. Others steal food or break into buildings to find a place to sleep. Rather than investigating the reasons behind these crimes, people are incarcerated, sometimes medicated, and only occasionally given true mental health treatment. They are then released with no outside support or ways to continue accessing medications.

That is still entirely ignoring that prisons can cause mental health issues on their own. Solitary confinement, something that is widely used in American prisons, can cause or worsen symptoms of mental illness. Incarcerated people kept in solitary confinement are almost seven times as likely to harm themselves and more than six times as likely to “commit acts of potentially fatal self-harm” when compared to the general prison population.

Failures in the South

In 2017, a federal district court found that the Alabama Department of Corrections (ADOC) was providing “significantly inadequate care.” This decision came after years of litigation. The case, Braggs v. Dunn, is still ongoing almost ten years after it was first filed in 2014. Since then, little has changed in ADOC’s prisons.

An opinion given in the case mentioned Jamie Wallace and his testimony 36 times over 300 pages. Wallace was incarcerated in 2014 for the murder of his mother. He had been diagnosed with bipolar disorder and schizophrenia. He testified in December of 2016. He died of suicide ten days later while in a unit dedicated to severely mentally ill inmates. Five days prior to his suicide, a healthcare worker at the prison wrote that he was “using crisis cell/threats to get what he wants.”

Wallace was mentally ill. For that, he was punished by prison guards. He was disciplined twelve times for harming himself, six of which involved being subjected to solitary confinement. Solitary confinement is regularly criticized for being inhumane, and it is especially so for those with preexisting mental health issues. According to Solitary Watch, a non-profit dedicated to ending the overuse of solitary confinement, citing a 2014 study on the topic, “individuals placed in solitary confinement were 6.9 times more likely to commit acts of self-harm and 6.3 times more likely to commit acts of potentially fatal self-harm than people in the general population.” Adding that people with mental illnesses are more likely to harm themselves than people without paints a grim picture of what happens inside these walls.

After Wallace’s suicide, the court ordered an emergency plan to be made to prevent future suicides. That plan was too late for James David Johnson, who hung himself only a few days after Wallace.

The court also accused correctional workers of being ambivalent or actively encouraging suicide. “ADOC officers essentially called a prisoner’s bluff, and then that person attempted suicide.” During his testimony, Wallace said that a correctional officer handed him a razor blade and told him, “You want to kill yourself? Here you go. Use this.” The two parties in the case had previously settled over the issue of razor blades’ presence in crisis cells – the same kind of cell Wallace was able to hang himself in. This lack of awareness on the part of ADOC was only exacerbated by the chronic understaffing of mental health workers. In January of 2023, ADOC stopped reporting the number of deaths – both homicides and suicides – that occurred in its prisons.

In 2021, Disability Rights Mississippi, Mississippi’s federally mandated watchdog agency (protection & advocacy agency), filed suit against the Mississippi Department of Corrections due to severe mistreatment of numerous disabled inmates. One individual, who was described as having ADHD, OCD, and bipolar disorder, was refused access to his medications and, according to DRMS’s investigative report, “during suicide watch, recalls being told by a passing officer to go ahead and kill himself.” Another person with PTSD and bipolar disorder “needs… mood stabilizers. MDOC has yet to treat this offender.” The lawsuit itself, Wallace v. Mississippi Department of Corrections, reads, “DRMS has encountered many offenders who have attempted self-harm, which was ignored by MDOC staff. In some cases, the self-harm was encouraged by MDOC staff.”

Florence Supermax 

A short time after Braggs v. Dunn, another lawsuit was filed for similar reasons – this time against the supermax prison in Florence, Colorado, also called the ADX. Rodney Jones, who assisted in the early stages of the lawsuit and who was previously held in the ADX, told the New York Times in 2015 that a staff psychiatrist stopped the medication he took for his bipolar disorder because “We don’t give out feel-good drugs here.”

One of the plaintiffs in that lawsuit is Jack Powers. Powers was sent to the ADX after an escape attempt preempted by threats from members of the Aryan Brotherhood, some of whom he had testified against after witnessing the murder of a friend. All three men he testified against were being held at ADX Florence when Powers was transferred there. While incarcerated there, Powers “lost his mind.” He mutilated himself numerous times, including by removing his earlobes, chewing off one of his fingers, removing one of his testicles, and tattooing himself with a razor and black carbon paper dust.

A slightly elevated shot of Florence Supermax prison, a red brick building surrounded by short grass and hills.
Florence ADX Prison. Source: Yahoo Images

David Shelby was incarcerated for threatening President Bill Clinton after he “became convinced that God wanted him to free Charles Manson from prison.” While incarcerated, Shelby sliced off part of his finger and ate it. Herbert Perkins, another prisoner, attempted to cut his throat with a razor. After being treated, he was ordered to mop up the blood left in his cell – it had not been cleaned since he was taken to the hospital.

Conclusions 

American prisons often have inhumane conditions. Those issues are compounded even further when the inmates in question have a mental illness. Prisons are unprepared to serve as psychiatric institutions, nor have they, overall, attempted to change to do so. Even so, that is what they are doing. Between the lack of adequate treatment, the negative psychological effects being incarcerated can cause, and the lack of assistance from correctional workers, it should be no surprise that rates of self-harm, suicide, and mental illness in prisons are so high.

Courts take time to process cases. This is demonstrated by many of the cases mentioned; Carty v. Mapp has been ongoing for 30 years, Wyatt v. Stickney ended in 2003, 33 years after it was first filed, and Braggs v. Dunn, one of the more recent lawsuits mentioned, is over a decade old. This is by design. A longer trial gives more opportunity for both parties to adequately present cases and, in the cases of these lawsuits, make changes. Despite that necessity, something needs to change. Mentally ill people are suffering and dying in jails and in prisons. The correctional system will not change on its own; it takes outside pressure to change things, and lawsuits, the most effective means of creating this change, take decades to be resolved. Systemic changes need to be made to how these prisons function and the societal role they play.

 

Tragic Killing of a Corporal and the Urgent Need to End Female Genital Mutilation

by Grace Ndanu

The Kenya Girls Guide Association hosted a rally against FGM during 16 Days of Activism in 2011.
The Kenya Girls Guide Association hosted a rally against FGM during 16 Days of Activism in 2011. Source: Yahoo Images

The killing of Corporal Mushote Boma on December 15, 2023, in Elgeyo Marakwet County, Kenya, has brought to light the deeply entrenched issue of female genital mutilation (FGM) and the urgent need for increased awareness and action to eliminate this harmful practice. The tragic incident, where Corporal Boma was stoned to death by a mob of young men after rescuing a group of girls who had been forced to undergo FGM, signifies a significant setback in the fight against this violation of human rights in Kenya.

Female genital mutilation, also known as female genital cutting or female circumcision, is a practice that involves altering or injuring the female genitalia for non-medical reasons. FGM is a harmful practice and a violation of the rights of girls and women. It can lead to severe physical, emotional, and psychological consequences, including but not limited to severe bleeding, infections, complications during childbirth, and long-term psychological trauma. The World Health Organization (WHO) has classified FGM into four types, with type 3 being the most severe, involving the removal of all external genitalia and the stitching of the vaginal opening.

According to reports, the incident involving the Corporal occurred when the police were taking the rescued girls to the hospital after the illegal FGM procedure. It is a grim reminder of the challenges faced by law enforcement officers and activists in combating such deeply rooted harmful practices. Despite the ban on FGM in Kenya, the practice still persists in certain areas, often conducted during school holidays, using crude methods and tools by individuals who continue to defy the law.

It is essential to understand that the practice of FGM is not limited to Kenya but is prevalent in many African countries, as well as in some parts of Asia and the Middle East. The complexity of cultural, social, and traditional beliefs and practices surrounding FGM makes the fight against it particularly challenging.

An infographic on FGM, including information about how many girls and women are impacted by it, practiced in over 30 different countries around the world. Source: Yahoo Images
An infographic on FGM, including information about how many girls and women are impacted by it, is practiced in over 30 different countries around the world. Source: Yahoo Images

In the wake of Corporal Boma’s tragic killing, there is an urgent need for heightened awareness and education about the dangers of FGM. The involvement of communities, religious leaders, and other stakeholders is crucial in effectively addressing and eliminating this harmful practice. There is a pressing need for community-based interventions focused on education, awareness, and empowering women and girls.

Furthermore, it is imperative for the Kenyan government and other relevant authorities to take decisive action and strengthen the enforcement of laws against FGM. Perpetrators of FGM must be brought to justice to send a clear message that this harmful practice will not be tolerated in any form. The government should collaborate closely with local organizations and international partners to develop and implement comprehensive strategies to combat FGM effectively.

The media can play a pivotal role in raising awareness about FGM and shaping public opinion on the issue. Media campaigns and educational programs can provide crucial information on the physical and psychological consequences of FGM, dispel myths and misconceptions, and promote positive social norms around the issue. Additionally, the media can highlight success stories of communities that have abandoned the practice of FGM, inspiring others to follow suit.

At the global level, the international community plays a vital role in supporting efforts to combat FGM. International organizations, including the United Nations and its specialized agencies, as well as non-governmental organizations, have been advocating for the elimination of FGM through various programs and initiatives. These efforts range from providing direct assistance to affected communities, conducting research and data collection, advocating for policy changes, and supporting grassroots organizations working at the local level.

Some resources laid out for community members to learn about the dangers of FGM. It includes pamphlets, brochures, and a 3D model used to teach about different types of FGM.
Some resources are laid out for community members to learn about the dangers of FGM. It includes pamphlets, brochures, and a 3D model used to teach about different types of FGM. Source: Yahoo Images

The killing of Corporal Mushote Boma serves as a stark reminder of the urgent action needed to eliminate the harmful practice of female genital mutilation. It is crucial to work collectively to raise awareness, educate communities, and enforce laws to protect the rights of girls and women. This tragic incident must galvanize individuals, communities, and governments to address FGM comprehensively and put an end to this barbaric practice.

The world must unite to protect the rights and well-being of girls and women globally and ensure that no one else suffers the same fate as Corporal Mushote Boma. By fostering a culture of respect for human rights and gender equality and by promoting positive social norms and behaviors, we can strive to create a world where every girl and woman has the right to live free from the fear and trauma of female genital mutilation. Together, we can work towards a future where every girl and woman can fulfill her potential without being subjected to the physical and emotional pain of FGM.

The tragic killing of Corporal Boma is a solemn call to action, and it must be responded to with determination, compassion, and unwavering commitment to bringing an end to the harmful practice of female genital mutilation once and for all.

Disproportionate Deaths: Black Mothers

by Abigail Shumate

*The use of gender-affirming language is incredibly important, and it is vital to remember that women are not the only people capable of giving birth or the only people subjected to maternal risks. Unfortunately, research on transgender, intersex, and nonbinary births is incredibly limited, so for the sake of concision, this post will refer to the maternal mortality crisis largely in the context of women. *

Maternal Mortality

Maternal mortality is perceived as a thing of the past. In the 21st century few feel as apprehensive about the idea of them or a loved one giving birth as they would have in centuries prior. One group that does not share this same luxury is black mothers. In America, black women are three times more likely to die from pregnancy-related causes than white women. Causing these issues are years’ worth of issues, including differences in the quality of healthcare, implicit bias, and structural racism.

With 80% of pregnancy-related deaths being preventable, it empowers no one to learn that Alabama is one of the greatest perpetrators of maternal mortality with the third highest rate in the country. A piece of anecdotal evidence that I stumbled upon while researching this topic is local to not only Birmingham, but to UAB as well. A former faculty member of UAB, Angelica Lyons, was subjected to pregnancy-related trauma that was, simply put, unnecessary and preventable. Lyons, after emphatically describing her symptoms to her doctors, was brushed off and the severity of her symptoms was not realized. Because of this neglect, she was forced to live with an undiagnosed case of sepsis that resulted in an emergency C-section months before her due date. Fortunately, both she and her baby survived although it was a close call for the Lyons mother. This is not an atypical experience for women of color, and black women specifically. Historical bias against black women results in many doctors dismissing their pain as typical or as something they can handle.

To understand the racism incorporated in the gynecological field, it is important to briefly address the history of gynecology. Gynecological science began in the 1840s, when J. Marion Sims, the so-called “father of gynecology,” performed experimental C-sections on black slaves without any anesthetics. This inhumane treatment continued after the abolition of slavery, with unnecessary hysterectomies being performed on black women. Dr. Deirdre Cooper Owens said it best when she stated, “the advancement of obstetrics and gynecology had such an intimate relationship with slavery, and was literally built on the wounds of Black women,” Following this, black families were kept from white hospitals with substantial funding until the Civil Rights Act of 1964. The Civil Rights Act did not completely eliminate the disparity, and healthcare discrimination still follows us to this day.

Alternate Text: Photo of a University of Alabama at Birmingham building, displaying the words “University Hospital.” Source: Flickr
Photo of a University of Alabama at Birmingham building, displaying the words “University Hospital.” Source: Flickr

 

Maternity Deserts

One cause of inadequate care for all mothers is maternity deserts. Maternity deserts are counties that have no hospitals offering obstetric care, no birthing centers, and no obstetric providers. Over two million women between the ages of 15 and 44 live in these maternity deserts, and between 2020 and 2022, the number of counties determined to be maternity deserts increased. Maternity deserts disproportionately affect Black and Hispanic neighborhoods (although, this post focuses on black mothers, as the difference between black and white mothers tends to be starker). Maternity deserts often have lower access to transportation as well, and these transportation barriers can hinder the utilization of prenatal care.

 

Alternate Text: Photo of an industrial city, featuring train tracks, cranes, and various types of buildings. Source: Flickr
Photo of an industrial city, featuring train tracks, cranes, and various types of buildings. Source: Flickr

 

A Broader Scale

Health disparities amongst black people are not isolated to maternal issues.  Black people must struggle with medical practitioners throughout their entire lives. Doctors habitually brush away the concerns of black people of all ages, causing them to be misdiagnosed, and resulting in worse treatment than their white counterparts, or no treatment at all. As written about in this post, this begins when black people are in utero and can lead to lifelong health conditions that are misunderstood and under-addressed.

For example, black children are more likely to have asthma and less likely to have treatment. There are many reasons for this; however, I am choosing to focus on the long-term effects of Jim Crow laws. Unfortunately, many areas with below-average housing (or areas located near toxic sites) are the same areas that were the result of previous redlining. Comparatively, 4 in 10 black children live in areas plagued by poor environmental factors, as opposed to just 1 in 10 white children. People are quick to discount the social factors that play into conditions such as asthma; however, many scientists agree that structural conditions can worsen asthma and cause certain groups to be unable to obtain treatment.

Later in life, black people are more likely not only to have Alzheimer’s, but they are also less likely to be properly diagnosed, which delays or prevents their ability to get treatment (not dissimilar to the conditions referenced above). Statistically, black people who are over 65 are 4% more likely to have Alzheimer’s than white people (14% versus 10%), but it is likely that this disparity is even larger due to said misdiagnosis.

Alternate Text: Photo of a blue inhaler. Source: Flickr
Photo of a blue inhaler. Source: Flickr

Progress

While black maternal mortality is still an incredibly pertinent issue, progress has been made in recent years. In 2019, two members of the House of Representatives, Lauren Underwood and Alma Adams, created the Black Maternal Health Caucus. This caucus is one of the largest bipartisan groups in Congress, and its goal is to “work with…partners in industry, nonprofits, and the Administration to find solutions to ending disparities and achieving optimal birth outcomes for all families”. One creation by the caucus is the Black Maternal Health Momnibus Act, or more casually, the Momnibus. The Momnibus aims to address the maternal mortality crisis through investments in every aspect that may exacerbate mortality rates. It includes 13 bills that aim to enlarge the perinatal workforce so that it addresses diversity needs, extend the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) eligibility so that mothers can have support for longer periods of time after giving birth, increase support for mothers who are incarcerated, invest in federal programs that benefit mothers and infants during public health crises, promote vaccination among mothers, and more.

Another move towards progress is with President Biden’s proposed 2024 budget. This budget incorporates $471 million in funding. One of the tangible things that it will include is Medicaid for twelve months postpartum. These efforts are admirable beginning steps; however, the work is far from complete.