Category: Disability Rights

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.

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. 

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.

 

How American Disability Rights Are Not Enforced

by James Delano

What Disability Rights Laws Exist? 

The Americans with Disabilities Act (ADA) is the primary law safeguarding the rights of disabled Americans. It was passed on July 26th, 1990, with updates later passed in 2008. The ADA was the largest law related to rights for people with disabilities in the United States when it was passed and remains so today. 

The ADA recognizes three major areas it applies to, covered in Titles I, II, and III. 

Title I was written about employment. It ensures equal access to employment for people with disabilities. It forbids discrimination towards employees with disabilities based on their disability and requires reasonable accommodations be made for them. Title II covers public services and buildings, such as libraries, public colleges and universities, courthouses, and benefits programs. Title II creates stricter standards for publicly funded agencies and programs than Title III does for private organizations. Both Title II and Title III require reasonable accommodations be made for the disabled individual requesting the accommodation without the infliction of undue hardship. 

Title III covers private corporations and “public accommodations,” which include hotels, restaurants, stores, private schools or daycares, parks, and others. 

Prior to the passage of the ADA, legislation designed to improve the rights of people with disabilities was sparse. The first major piece of legislation passed was Section 504 of the Rehabilitation Act of 1973. Section 504 was signed in 1977, years after the original Rehabilitation Act, due to the 504 sit-ins occurring at the time. The first version of IDEA, which protects children with disabilities, became law in 1975. The Fair Housing Act was only expanded to people with disabilities in 1988.

Dozens of protestors celebrate in San Francisco after Section 504 was passed. Source: Yahoo Images
Dozens of protestors celebrate in San Francisco after Section 504 was passed. Source: Yahoo Images

The ADA is primarily enforced by complaint. A person with a disability is required to submit a formal complaint to the Office of Civil Rights or to the Department of Justice. They are then required to go through the process of creating a mediation agreement to ensure future access for the complainant and for future people with disabilities. People with disabilities are discriminated against in almost all parts of life: employment, marriage, and voting. 

For example, in 2016, Jefferson County was forced to alter its polling locations due to violations of the ADA in numerous polling stations. Until 2010, UAB was under a similar resolution about buildings on campus; many buildings built and renovated after 1992, when architectural requirements began being enforced, were non-compliant with the ADA. Both complaints were filed by people with disabilities after their rights were violated. 

People with disabilities also largely lack marriage equality in the United States. Married individuals almost always lose their benefits after marriage, including Social Security payments, healthcare, and other necessities. Often, people with disabilities would be forced to give up the things that make them able to survive – health insurance, home healthcare, and other benefits – in order to gain the legal protection and social benefits of marriage.  

The ADA is the main legal source for most rights for people with disabilities in the United States. If the ADA goes unenforced, people with disabilities are left behind. That is why its enforcement is so important: without the ADA, most people with disability lack the ability to utilize their rights, and without that ability, those rights may as well not exist.

American Disability Rights in Modern Institutions for People with Disabilities 

Olmstead v. L.C. (1999) was a Supreme Court decision decided based on the text of the ADA. It created requirements in many cases for community-based services over widespread institutionalization. The goal of the decision was to reduce the number of people with disabilities who lived in institutions.

In 1967, 400,000 Americans resided in these institutions, amounting to about 0.2% of the total U.S. population. By 2012, that number had risen to about 1,900,000 Americans with disabilities living in institutions, or just over 0.6% of the total U.S. population. Is this an example of deinstitutionalization?

A middle-aged man stands inside a room at a group home in front of a bed. Source: Yahoo Images
A middle-aged man stands inside a room at a group home in front of a bed. Source: Yahoo Images

The ADA applies to group homes and smaller forms of institutions, but abuse is still rampant in those locations. In 2021 in a group home in Eight Mile, a resident was severely beaten, allegedly by an employee of the group home he was living at. A year later, at a group home in Chickasaw, two group home employees were arrested for pouring boiling water on a resident of the home who had physical and intellectual disabilities. In 2022 a man with an alleged history of domestic abuse was employed at a group home in Mobile County, where video footage shows him using a belt to assault a resident with severe disabilities. These cases of abuse in institutions happen regularly, despite Alabama’s rate of institutionalization of people with disabilities being lower than the national average and us being a smaller state than many others.

Larger states and the country as a whole are not immune to this problem. A study conducted in 2000 found that “Children with disabilities are 3.4 times more likely to be maltreated than nondisabled peers.” Between 2004 and 2010, over 6% of the deaths of people with developmental disabilities were caused by neglect and abuse. At the state level, numerous New Jersey group homes were forced to close in 2022 due to unreported abuse. 

American Disability Rights in Outside Institutions for People with Disabilities 

Discrimination against people with disabilities is not exclusive to group homes and locations specific to people with disabilities. In Alabama alone, since 2013, the Department of Education Office of Civil Rights (DOEOCR) recorded 74 resolved civil rights complaints in Alabama. The DOEOCR covers all areas under the Department of Education (DOE), including universities, K-12 schools, public libraries, and other groups funded by the DOE, and has recorded 74 resolved ADA-related complaints in Alabama since 2013. Those complaints have been filed against institutions including community colleges, four-year universities, including UAB, and K-12 school districts, including Birmingham City Schools twice, the Jefferson County school district once, and multiple other Jefferson County school districts. 

Outside of areas of education, the Department of Justice has filed 114 cases related to the ADA and other disability legislation since 2021. Two of those cases occurred in Alabama. One agreement involved Medicaid discrimination; the other was based on employment discrimination by the Alabama Department of Transportation. Prior to 2021, the Department of Justice filed numerous other cases regarding the ADA. Many cases involved people with HIV/AIDS, who are classified as disabled under the ADA. Others were over Olmstead. As I discussed above, Olmstead was intended to aid in the national deinstitutionalization effort. To that effect, the Department of Justice has filed many cases since Olmstead was decided regarding its enforcement. 

Medicaid is not immune to these problems either. Medicaid provides health insurance to low-income individuals and people with disabilities, many of the latter also being low-income. Last year, the Alabama Disability Advocacy Program (ADAP) filed a complaint against the Alabama Department of Senior Services (ADSS) alleging that there are barriers to accessing services provided by programs under the Alabama Medicaid Agency. According to ADAP, in the time they took to process the complaint in question, two individuals on the Medicaid programs in question died due to these failures. These Home & Community Based Services (HCBS) spent $132,000,000 in the 2021 fiscal year, and Alabama Medicaid as a whole received $5.6 billion in federal funding the same year, about $4700 in federal funds for each Alabamian who was eligible for Medicaid at the time. 

What is Changing? 

There are currently changes being made to many of the systems I discussed in this post. The aforementioned ADAP complaint regarding Medicaid is currently unresolved, and the Colby Act, which my colleague Lexie Woolums discussed at length in a recent blog post, was recently passed into law. Just a few months ago, the Department of Health and Human Services proposed changes to regulations around the Americans with Disabilities Act to clarify those that already exist. Those changes include clearer standards for health insurance coverage of medical equipment and clarify childcare requirements, both of which are things that many Americans have difficulty affording.

Shackling and Psychosocial Disabilities

by Blue Teague

An empty room with three windows, all with long, sheer curtains. The two ceiling lights are off. Nothing but light can be seen outside the windows.
An empty room with three windows, all with long, sheer curtains. The two ceiling lights are off. Nothing but light can be seen outside the windows. Photo by Hans Eiskonen on Unsplash.

Mental Health, Autonomy, and Psychosocial Disability

In 1887, Elizabeth Seaman—better known as Nellie Bly—published Ten Days in a Mad-House, a collection of articles she had previously written for Joseph Pulitzer’s New York World. Along with cementing her status as a World journalist, her raw, unfiltered reporting offered thousands of readers a rare glimpse into a mysterious frontier: American mental asylums.

A Pennsylvania native, Bly’s anonymous newspaper pieces championing women’s rights soon evolved into a career based on investigative journalism. However, complaints from her subjects resulted in newspaper executives assigning her to less controversial topics. After years of rejection and gender discrimination, Bly made a last-ditch attempt to save her career by approaching Pulitzer directly and weaseling her way into a novel undercover assignment. Critics had called her insane her entire life for her risky stories, and now she had to play the part.

Bly’s articles quickly garnered attention for numerous reasons. For one, the story itself was sensational. After successfully feigning insanity with odd mannerisms and facial expressions, Bly found herself in New York City’s Women’s Lunatic Asylum after a medical professional declared her clinically insane. There she remained for ten days despite immediately dropping the act. During this period, staff allegedly attributed her every move, including normal behavior, to her supposed mental illness. This would have perpetually prevented her release had outside contacts not stepped into vouch for her sanity. By this time, Bly had risen to minor celebrity as New York questioned where this “pretty crazy girl” had even come from.

However, it was Bly’s description of the institution’s conditions that quickly spread through the masses. Her multi-page articles detailed the physical abuse, gross negligence, and psychological harm patients endured.

Sanitation was poor. Disease was rampant. Food and potable water were scarce, and the staff frequently resorted to physical and verbal beatings when dealing with those under their care. Upon her exit, Bly stated that she believed many women there were as sane as herself. If anything, the asylum’s treatment of already vulnerable women caused insanity.

Eventually, a grand jury launched its own investigation into Blackwell Island’s institution, the parent of the Women’s Lunatic Asylum. Despite immense budget increases, the institution shut down a few years later in 1894.

 

A dilapidated wooden shed with some white paint on the door and bottom boards. It has two windows with broken glass and rusty frames. Behind it its dense woods.
A dilapidated wooden shed with some white paint on the door and bottom boards. It has two windows with broken glass and rusty frames. Behind it its dense woods. Photo by Lilartsy on Unsplash.

Life in Mental and Physical Shackles

Despite Bly’s work sparking outrage over a century ago, inhumane treatment of those with mental health disorders—or psychosocial disabilities—continues today. According to the World Health Organization, 1 in 8 people live with mental health issues. Without adequate support and resources, these conditions can quickly become disabling. Psychosocial disabilities share strong correlations with higher poverty rates, increased medical discrimination, occupational inequity, and other factors contributing to a generally lower quality of life.

In 2020, Human Rights Watch released 56-page document reporting rights violations of the mentally ill. “Shackling,” a recurring theme, was found in 60 countries across six continents.

Shackling is an involuntary type of hyper-restrictive housing. Although it does not include shackles specifically, restraints such as ropes, chains, and wires are commonplace methods in keeping the victim in extremely close quarters. These areas can be sheds, closets, or even caves. Similar to the asylums in Bly’s era, sanitation is a luxury. The detained person often eats, drinks, and defecates in the same space with little ability to prevent contamination.

The motives and background around shackling is a complex cultural issue. Some offenders tend to be family members who, despite loving the person, lack the resources and/or education to deal with mental health crises. Keeping the person confined can appear to be the safest option when confronted with the possibility of them hurting themselves or others.

Additionally, social stigma can create even more danger for the family as a whole as well as the mentally ill individual. Instead of risking exile or ostracization from the community, families may seek alternative healing methods at home, such as herbal remedies, that lack significant medical backing. This, in turn, can intensify psychosocial disability, leaving the family overwhelmed and confused with few options.

A photograph of a medical IV stand holding and empty IV bag on a dark background.
A photograph of a medical IV stand holding and empty IV bag on a dark background. Photo by Marcelo Leal on Unsplash.

Abuse at the Systemic Level

However, abuse does not just occur at the familial level. Mistreatment and abuse flourish in large institutions. The institutions go by many names: asylums, mental hospitals, psychiatric healing centers, etc. These are establishments, often state-funded, purposefully keeping those with psychosocial disabilities away from the general population. Although the institutions usually operate under the pretext of healing and protecting the mentally ill, many criticize the asylum system for blatant human rights offenses.

The abuse is systemic when many perpetrators organize and hide the mistreatment of victims. One such man, “Paul,” shared his experience with reporter Kriti Sharma from HRW’s Disability Rights Division. Paul had lived for five years in a religious healing center in Kenya. He said, “It makes me sad…It’s not how a human being is supposed to be. A human being should be free.”

Paul and his companions walked in chains—literal shackles—and were not allowed clothing. His restroom was a bucket.

In the USA, a wave of deinstitutionalization in the 1970s shuttered many mental asylums, and psychiatric facilities still operating do so with varying levels of success. New York City’s mayor Eric Adams recently announced an expansion of a law allowing months-long involuntary commitment to hospitals for those who, due to mental illness, failed to acquire “basic needs” such as shelter and food. Hospitalization would, in theory, provide the psychosocially disabled with the time and education to recover and start anew.

Opponents quickly pointed out flaws in this process.

As with shackling, involuntary hospitalization represents a loss of autonomy. In a 2022 article in The Guardian, Ruth Sangree reflects on the USA’s changing legislation by connecting it to her own experiences. She describes the monotonous isolation, undercurrent of fear, confusion resulting by the sudden loss of control over her own life. As a nineteen-year-old with no idea of when she would be “set free,” Sangree focused on appearing normal in fear of indefinite hospitalization, regardless of the effectiveness of treatments.

There stands the argument of many critics of institutions: the system is ineffective at best and traumatic at worst. Still, rebuttals exist. In one Times piece, retired employees from a California asylum vouch for the happiness of their patients, stating they “blossomed” when provided with regimen and shelter. This view forms the defense for New York’s law revision, which frames involuntary hospitalization as a compassionate action for the patient’s own well-being.

Objectively, both sides claim to want the same thing: a better quality of life for those with psychosocial disabilities. It has always been the how that stirs debate.

Eight people of varying skin and sleeve colors standing in a circle with one hand each stacked on top of each other's.
Eight people of varying skin and sleeve colors standing in a circle with one hand each stacked on top of each other’s. Photo by Hannah Busing on Unsplash.

The Future of Mental Health Care

One factor in the corruption of institutional systems lies in language. Terms like “healing center” and “asylum” have historically protected potential perpetrators from legal action. Nellie Bly’s work helped lift the veil around mental health and disability, peeling away the euphemisms to reveal the abuse of a vulnerable population.

Today, watch groups exist for this reason. Organizations such as the Alabama Disability Advocacy Program (ADAP) examine the care of people with disabilities in facilities like hospitals, nursing homes, and schools, where caregivers can easily take advantage of those under their care. If rights violations are found, they can work with the facility to improve conditions or take legal action. These organizations exist on a state and national level in the USA.

Individuals can make a difference by simply learning about mental health and advocating for equal treatment of those with mental health conditions. #BreakTheChains is a movement led by Human Rights Watch with goals of educating communities to prevent the chaining of men, women, and children with psychosocial disabilities.

Additionally, awareness is key—October is recognized as mental health awareness month, and invisible disabilities week is in late October. Psychosocial disability month specifically takes place in July.

A Brief History of Disability Advocacy in America & How the Colby Act is a Step Forward

by Lexie Woolums

“It will help me live a full life — to vote, to marry, and to go to church. It will help people with disabilities to live their own lives and speak for themselves.” – Colby Spangler.

How the Colby Act Began

The Colby Act is named after Colby Spangler, a Shelby County resident who was born with cerebral palsy.

Kim Spangler, Colby’s mom, remembers when she and Colby attended the Spring concert for Colby’s high school band. Colby had been in the school’s band for a year as a freshman. At this concert, the seniors stood up and declared where they would be attending college.

This prompted Colby to ask his mom where he would be going to college, which is something she had yet to consider.

Throughout Colby’s high school career, they began researching colleges that he could attend. Through this research, they learned that Colby’s individualized education plan (IEP) had to reach a certain degree for him to qualify to attend college. They also learned that most college programs preferred or even required that the student was their own guardian rather than being under guardianship by someone else, which was important to note since guardianship is a common occurrence as young people with disabilities become legal adults in Alabama at the age of nineteen. Some critics have called this the “school to guardianship pipeline.”

According to Kim, many people do not realize how many rights people sign away with guardianship, such as the right to vote, marry, and even where you can live.

Through this knowledge, combined with Kim’s advocacy as Colby went through high school, the Colby Act was born. Kim introduced the act in 2022, sponsored by Senator Arthur Orr (R-Decatur) and Cynthia Almond (R-Tuscaloosa). After being unanimously passed on April 20, 2023, the bill was signed into law by Governor Ivey and later went into effect on August 1, 2023. I will discuss this in further detail later, but the Colby Act proposes a legal alternative to guardianship known as supported decision-making. This is an important improvement for disabled people and elderly people since it will preserve their autonomy.

 

Colby wearing a shirt that says "The Colby Act, vote yes!" next to Representative Cynthia Almond of Tuscaloosa.
Figure 2:Source-Kim Spangler; Colby & Representative Cynthia Almond,
who co-sponsored The Colby Act with Senator Arthur Orr. 

 

History of Disability Advocacy in America

In the United States, people with disabilities have historically had their rights ignored or entirely removed. While I will not go into explicit detail here, my colleague, James DeLano, recently wrote an article about the atrocities of institutions for disabled people. Though institutions in the context of James’s discussion are far from the only instances where disabled people face being stripped of their rights, I found the brief history to be exceedingly informative as I wrote this article.

Legally and socially, disability rights have not always been viewed as civil rights but through a lens of charity, especially in the case of developmental and intellectual disabilities. Beyond that, legal action to protect disabled Americans came exceptionally slowly.

In 1977, President Carter’s new HEW (Housing, Education, and Welfare) Secretary, Joseph Califano, formed a review board to consider an act that would protect disabled people under federal law. Unfortunately, the board did not include anyone from the disabled community, so many people were concerned that the law would have critical aspects of it removed before being passed. The American Coalition of Citizens with Disabilities (ACCD) pushed for the signing of the regulations as they were, with nothing removed by the review board. They stated that if the piece was not signed by April 5, they would respond.

As the date passed with no action, protests began. In April of 1977, around 150 disability advocates staged a sit in a federal building in San Francisco. They remained there for 25 days, refusing to leave until the Carter Administration signed the law that promised to protect people with disabilities. Similar protests broke out across the United States, but most only lasted a few days, making San Francisco one the most impactful.

 

a black and white photo featuring disability rights advocates. In the center, a person in a wheelchair has a sign that reads "I can't even get to the back of the bus."
Figure 3:Source- Yahoo Images; Disability protesters

 

These are known today as the Section 504 protests. They were a significant turning point because disabled people publicly rejected the pity and charity sentiments and held the Carter Administration accountable for giving them the same protections as every other American.

“Through the sit-in, we turned ourselves from being oppressed individuals into being empowered people. We demonstrated to the entire nation that disabled people could take control over our own lives and take leadership in the struggle for equality,” said activist Judith Heumann.

Through the protests and meetings with the Carter Administration, Section 504 was passed. Beyond that, Section 504 of the Rehabilitation Act of 1973 laid the groundwork for the Americans with Disability Act (ADA), which prevented any institution receiving federal funds from discriminating based on ability.

Black and white image of a person holding a protest sign that reads "504 is law now make it reality."
Figure 4:Source-Yahoo Images; Protest sign mentioning Section 504

Considering the history of disability advocacy in the US, we have come a long way. Despite that, there is still a lot of work to be done, especially for people with intellectual disabilities.

 

Distinction of Conservatorship and Guardianship in Alabama

Before diving into what the Colby Act does for Alabamians today, I want to address the elephant in the room and make an important distinction.

Over the past couple of years, there have been a few cases where conservatorships have come under fire, most notably with US pop star Britney Spears. Her father, Jamie Spears, became the conservator of her financial estate and personal life in 2008. One of the more significant outcries from this was when Britney Spears commented that she could not get married and have kids due to her conservatorship. More specifically, she claimed that they would not allow her to have her birth control removed. Many aspects of this conservatorship were considered abusive by much of the general public, sparking the Free Britney movement in 2021. I bring this up to clarify an essential distinction in discussing conservatorships.

Other stories like this have been brought to the public’s attention recently, bringing awareness to conservatorship abuse. With that being said, not all of them represent how conservatorships function in Alabama. In California, where the Spears conservatorship was established, conservators have jurisdiction over the ward’s financial estate and personal life decisions, which would not be the case in Alabama. In Alabama, a conservator has jurisdiction over the person’s estate. In contrast, a guardian would have jurisdiction over a person’s decisions, including the ability to get married or have children.

To put it simply, a guardian makes decisions for a person’s everyday life, and a conservator makes decisions for their financial estate. So, in the state of Alabama, for a person to have the control that Jamie Spears had, they would have to obtain two distinct approvals from a Probate Court: one for a conservatorship of the person’s estate and the other for a guardianship of the person’s decisions in their personal life. With that distinction in mind, we will look at how guardianships impact people with disabilities.

 

Colby standing and smiling for the photo in between James Tucker and Nancy Anderson of ADAP at an event.
Figure 5:Source-Kim Spangler; James Tucker & Nancy Anderson of ADAP
with Colby at a Partners in Policy for Alabama Event

Guardianships for Disabled People in Alabama

In Alabama, the primary way for parents of people with disabilities to help protect their children and young adults as they transition into adulthood at the age of nineteen is by getting guardianship over them.

Guardianship is used when a court proceeding finds a person to be incapacitated. According to the Alabama Disability Advocacy Program (ADAP), Alabama law defines an incapacitated person as “any person who has one or more of the following impairments: mental illness, mental deficiency, physical illness or disability, physical or mental infirmities accompanying advanced age, chronic use of drugs, chronic intoxication, or other cause (except minority), and lacks the ability to make or communicate responsible decisions.”

In essence, guardianship allows another person to make decisions if a court determines someone is incapacitated. Similarly, conservatorship enables another person to make decisions about a person’s estate if a court determines that someone is incapacitated.

The important thing I want to note here is that to be legally declared incapacitated, the person must have one of the listed impairments and lack the ability to make responsible decisions. The person petitioning for guardianship or conservatorship must prove to a judge that the person is incapacitated based on these criteria.

Many people have guardians for a variety of reasons. For example, many older adults struggle to make responsible decisions and keep themselves and others safe as they grow older, so guardianship is sometimes needed so that family members can help with medical appointments and make decisions about other fundamental aspects of the person’s life.

While guardianships are necessary for some people who are disabled, they have been used as a one-size-fits-all solution, which fails to account for the varying abilities and needs of different people with disabilities.

Guardianship also proves problematic if a guardian decides they no longer want to have the responsibilities of being a guardian. More commonly, the guardian dies, which can result in a delay in decision-making for the ward (the person for whom the guardianship is for).

Often, it takes time for a new guardian to be set up. In many cases, the ward will become a ward of the state, which means that a judge, or, in some cases, even a sheriff, can become the ward’s guardian. State wards are often overworked and underfunded. Beyond that, they have little personal connection to the ward, which increases the risk of the person’s quality of life declining significantly.

 

Section one of the 14th Amendment, which states "All persons born or naturalized in the United States, and subject to the jurisdiction thereof, are citizens of the United States and of the State wherein they reside. No State shall make or enforce any law which shall abridge the privileges or immunities of citizens of the United States; nor shall any State deprive any person of life, liberty, or property, without due process of law; nor deny to any person within its jurisdiction the equal protection of the laws."
Figure 6:Source-Yahoo Images; 14th Amendment, which includes the equal protection clause that formed the basis of the argument for disability inclusion and signing of Section 504

 

Autonomy vs. Protection

One concern for people who have disabilities, especially intellectually disabled people, is the fear of people taking advantage of them. Commonly, guardianships have been established to protect the person from harm, even though they don’t always give parents the protection they seek for the adult.

For example, suppose a young adult has a past of being a victim of domestic abuse. In that case, guardianship may not necessarily protect them from that. Still, it is often viewed as a sort of legal footstep for the guardian to step in if things go wrong. Unfortunately, this is not always effective and is still extremely limited in its ability to prevent harm.

While some disabled people may require guardians, the one-size-fits-all approach of guardianship has been seen as the only option for far too long.

 

What The Colby Act Does for Alabamians Today

The Colby Act introduces the concept of supported decision-making for adults with disabilities in Alabama, making it the 19th state with supported decision-making (SDM) laws.

The Colby Act defines supported decision-making as “The process of supporting and accommodating an adult in the decision-making process without impeding the self-determination of the adult. This term includes assistance in making, communicating, and effectuating life decisions.” More specifically, the act states the following: “In lieu of a guardianship, an adult may enter into a supported decision-making agreement with supporters who may assist and advise the adult with making certain decisions without impeding the adult’s self-determination.”

This is a critical option for a disabled person who may need assistance making decisions but is not incapacitated as defined by the state, in which case a guardianship would unnecessarily strip them of their autonomy. This can also be a helpful option for aging adults since setting up an SDM agreement can prevent the need for guardians or conservators as they become elders.

The Colby Act defines a supporter as “An individual at least 18 years of age who has voluntarily entered into a supported decision-making agreement with an adult and is designated as such in a supported decision-making agreement.” It also establishes criteria for supporters and limitations on them, such as not obtaining information about the person for purposes beyond their role as a supporter.

Another significant piece of the act is the subject can revoke the SDM agreement at any time by notifying each supporter in writing. This is important because it preserves the adult’s agency and autonomy, allowing them to change the agreement or revoke it if it does not facilitate their ability to live a full life as anyone else would.

 

Colby stands in a black graduation cap and gown. He stands in front of a wall of red and white balloons, with a sign above that reads "where legends are made."
Figure 7:Source-Kim Spangler; Colby celebrating graduation from the College of Education’s
CCOS program at the University of Alabama.

 

The Colby Act is a big deal because it provides a law for something that has been happening informally for a long time. Due to the passing of the Colby Act, people who create supported decision-making agreements will now have additional protections behind the law. Though supported decision-making may not be an effective alternative for every instance where a family is considering guardianship, it is a substantial step in providing an alternative for disabled people who could benefit from a less invasive approach.

A History of Institutions for People with Disabilities: Neglect, Abuse, and Death

by James DeLano

What Are Institutions for People with Disabilities?

In this post, I focus on the institutions that were, and remain, facilities operating for the purpose of housing people with disabilities. The National Council for Disability (NCD) defines these institutions as “a facility of four or more people who did not choose to live together.” They summarize a report made by a consortium of self-advocacy organizations based on their experiences with institutionalization. The NCD list of criteria to define an institution, as synthesized from various self-advocacy groups, is that they:

  • Include only people with disabilities,
  • Include more than three people who have not chosen to live together,
  • Do not permit residents to lock the door to their bedroom or bathroom,
  • Enforce regimented meal and sleep times,
  • Limit visitors, including who may visit and when they may do so,
  • Restrict when a resident may enter or exit the home,
  • Restrict an individual’s religious practices or beliefs,
  • Limit the ability of a resident to select or remove support staff,
  • Restrict residents’ sexual preferences or activities,
  • Require residents to change housing if they wish to make changes in the personnel who provide their support or the nature of the support,
  • Restrict access to the telephone or Internet,
  • Restrict access to broader community life and activities.

Historically, these kinds of institutions have primarily included people struggling with mental health and people with intellectual or developmental disabilities.

What Were America’s First Institutions for People with Disabilities?

Mental institutions in America predate the reality of an American nation. The earliest hospital for the mentally ill, the Publick Hospital for Persons of Insane and Disordered Minds, was founded in Virginia in 1773. It was closer to a prison than what we would now call a hospital; patients were kept chained and shackled, physically abused, intentionally fed rotten food, and bathed in ice water. Inmates were rarely released. Many were placed or kept in prisons prior to or after their evaluation as being “insane.” This began to change in the 1840s; a new medical director attempted to use more humane approaches to treatment. Those included treatment that was consented to and largely removing chains and shackles.

The first modern institution for disabled people was founded by Samuel Gridley Howe in 1848 in Boston, Massachusetts. It was considered experimental, despite others’ previous endeavors taken elsewhere, but Howe had experience in a similar environment, having founded the Perkins Institution for the Blind twenty years earlier. A contemporary article sings praises of the institution. Despite that, the electronic catalog of annual reports by the institution, renamed the Walter E. Fernald State School, ends abruptly in 1973 with a report on identifying child abuse and neglect.

 

Small Victorian-era prison cell. Source: Yahoo Images
Small Victorian-era prison cell. Source: Yahoo Images

John F. Kennedy

John F. Kennedy (JFK) played an important role in the early reform of institutions for people with disabilities. Many people know that Kennedy’s sister, Rosemary, was lobotomized, leaving her permanently disabled and confined to a psychiatric institution. Lesser known is that Kennedy established the President’s Panel on Mental Retardation in 1961, the first government committee on the topic. The committee’s recommendations led to numerous regulations being changed and legislation being passed. One Panel member, Eunice Shriver, who was also Kennedy’s sister, went on to found the Special Olympics.

Institutions for People with Disabilities in Alabama

The first mental hospital in Alabama was the Alabama Insane Hospital, founded in 1859 and renamed to Bryce Hospital in 1900. Ricky Wyatt, at the time 15 years old, was committed by a court to Bryce in 1969. He was not mentally ill.

Wyatt’s institutionalization led to a widespread deinstitutionalization movement. His guardian, a former employee of the hospital, sued Bryce Hospital on his behalf. During the discovery process, Wyatt’s lawyers discovered numerous preventable deaths in the facility, as well as a complete lack of plans in case of a fire; there was no way to contact the Tuscaloosa fire department after 5:00 PM, and the fire hydrants on the property were decades old and incompatible with modern firefighting equipment.

That lawsuit, Wyatt v. Stickney (1972), was part of the beginning of a legal deinstitutionalization movement. It created a minimum standard for care at Alabama institutions for the mentally ill.

Willowbrook State School

Willowbrook was a state-funded institution in Staten Island from the 1940s until the late 1980s. The school was over its capacity in only a few years; in 1965, Robert Kennedy described Willowbrook as a “snake pit” with “rooms less comfortable and cheerful than the cages we put animals in a zoo.” The few changes that resulted from Kennedy’s visit were insubstantial and short-lived.

Another infamous incident in Willowbrook’s history was the hepatitis experiment conducted on the children in residence. The exact rate of hepatitis infection in children at Willowbrook is unknown; I have seen estimates ranging from 30% to 90% of children becoming infected during their time at Willowbrook. At the time, many specific details of hepatitis were unknown. Willowbrook had a local strain of hepatitis that was reputed to be less lethal than strains common elsewhere. Saul Krugman, funded in part by the U.S. Surgeon General’s Office, began conducting a study on hepatitis in Willowbrook – initially starting with an epidemiological focus, then shifting to a more involved study. Krugman intentionally infected 60 children at Willowbrook with the hepatitis virus by feeding them live samples of the hepatitis virus. Krugman “watched as their skin and eyes turned yellow and their livers grew bigger.”

Willowbrook left the public consciousness almost entirely until 1972, when Geraldo Rivera created a bombshell documentary that exposed the conditions at Willowbrook State School and institutions like it. In March 1972, residents’ parents filed a class-action lawsuit alleging violations of the constitutional rights of Willowbrook residents. Just three years later, as a result of the lawsuit, the Willowbrook Consent Decree created standards the institution would be Willowbrook open, however; Willowbrook State School formally closed “officially and forever” on September 17th, 1987.

 

Postcard of Willowbrook with a yellow label stating "Willowbrook State School". Source: New York Public Library Digital Collection
Postcard of Willowbrook with a yellow label stating “Willowbrook State School”. Source: New York Public Library Digital Collection

 

Despite the promise made in the wake of the Willowbrook scandal, alumni are still mistreated today. In 2020, The New York Times published the results of an investigation conducted into recent abuses in a group home in New York where some Willowbrook alumni resided. They describe physical abuse and neglect, including injuries caused by scalding water, deaths caused by neglect, and ant infestations. The investigation made allegations against 13 employees, nine of whom still worked for the agency, and seven of those still worked in group homes at the time of the article’s publishing.

Institutions for People with Disabilities Today

In 2018, the Office of the Inspector General (OIG), along with other federal agencies, published a report on group homes, which have largely succeeded large institutions like Willowbrook or Bryce. They found that, in 49 states, health and safety procedures were not being followed.

“OIG found serious lapses in basic health and safety practices in group homes. OIG made multiple referrals to local law enforcement to address specific incidents of harm.”

Between 2004 and 2010, 1,361 people with disabilities died in Connecticut. 82 of those deaths were caused by neglect or abuse. The causes were found to be due to “abuse, neglect, and medical errors.” The OIG found that “State agencies did not comply with Federal waiver and State requirements for reporting and monitoring critical incidents.” These “critical incidents” include deaths, assaults, suicide attempts, and missing persons.

 

Older man in wheelchair being escorted by caregiver. Source: Yahoo Images
An older man in a wheelchair being escorted by a caregiver. Source: Yahoo Images

 

While we, as Americans, often like to think our country has advanced for people with disabilities, the reality is disappointing. Willowbrook alumni are still being abused forty years later. Group homes have been found to have widespread abusive and neglectful practices.

State Protection & Advocacy agencies exist as a legal protection for people with disabilities. In Alabama, the Alabama Disability Advocacy Program provides legal assistance to people with disabilities in cases involving civil rights violations and has the ability to investigate said cases in hospitals, group homes, schools, and any other facilities where abuse or neglect of people with disabilities occurs.

Some Resources for individuals with disabilities in the Central Alabama region

A word cloud around the word "disability" that includes the various positions that people with disabilities hold in their lives. Some are brothers and sisters, others are homeowners, still some are politicians and lawyers, while others are business owners and firefighters. Disability is only one part of the identity.
Source: Yahoo Images

These past few weeks, we have focused on the broader struggles that people with disabilities face in America. We also looked into the American Education system and explored the many obstacles children with disabilities face within it. This was a much-needed topic to explore, yet I recognize the heaviness and feelings of despair that can follow after reading such a blog series. So, in order to provide some hope, as well as meaningful resources to those struggling with these issues, I have compiled a list of local non-profit organizations that focus on providing services to children (and adults) with disabilities and their families. These organizations provide various services, including places to destress and socialize, and range from serving individuals with both physical disabilities and invisible disabilities. Please take a few minutes to look through this blog and find the resources that you or someone you know might benefit from.

Intellectual Disabilities and Neurodivergence

Oftentimes, people with invisible disabilities can be overlooked by their teachers, peers, and community members because their disability is not “obvious”. Many people with intellectual or learning disabilities struggle to have their needs met because people are either dismissive of them or completely refuse their lived experiences altogether. Navigating through life with an invisible disability can be difficult, especially for younger children, but there are resources in the local Birmingham area that can help children with invisible disabilities as well as their caregivers better prepare for their future. Some of the resources below address developmental needs, and workplace readiness, and offer a sense of community for both children and adults with intellectual and learning disabilities, while others focus on people with a range of disabilities of all ages.

An image that reads, "Invisible Disabilities: They don't all look the same"
Source: Yahoo Images

Mitchell’s Place

Located in two locations, (Southside, and Birmingham), Mitchell’s Place is a non-profit organization that works with children who may be on the autism spectrum. They provide research-based resources for children with disabilities and their family members. For parents and caregivers of children with disabilities, Mitchell’s Place provides education and resources on how to provide the best care for those under their care. They also provide many resources for children, such as helping them develop social skills, helping with feeding, speech, and occupational therapy, providing both psychological and psychiatric resources, and also early learning opportunities for preschool-aged children. Established in 2005 by parents who were unable to find resources for their child with autism, Mitchell’s Place has served over 2500 families and prides itself on being a supporter of diversity, equity, and inclusion. For those interested, their Southside location can be found at 2305 Arlington Rd. Birmingham AL, 35204, and the other one is located at 4778 Overton Rd. Birmingham, AL 35210.

The Arc of Central Alabama

The Arc of Central Alabama (ACA) is another great resource for people of all ages with intellectual and learning disabilities (IDD). Supporting individuals throughout Jefferson County and Blount County, the ACA is Alabama’s largest provider of disability services and prides itself on being the only non-reject program in the state. This means that as long as referrals follow the proper channel, no individual is rejected from being part of the program. A local chapter of The Arc of Alabama and the larger Arc of the United States, the ACA also serves as a crisis center for individuals with IDD, providing a safe space for individuals and their families in times of need. The ACA caters to individuals of all ages, and its various programs focus on these different age groups. Their early intervention programs provide support for infants and toddlers with IDD, along with education and resources for their caretakers and families. Their employment support program trains high school-age students with IDD to help them find better employment opportunities when they are ready to enter the job market. The residential programs focus on providing a safe space for adults of all ages, and a newer adolescent unit has also been created to address the growing needs within the Central Alabama region. Finally, their Community Day programs cater to adults of all ages, providing them with opportunities to socialize and engage with others within their community and develop daily living skills, from balancing their finances to helping with hygienic needs. These programs are tailored to each individual based on their needs, necessities, abilities, and interests. In addition to all these programs, the ACA also empowers its members by providing them with training in advocacy work, focusing on educating the public, following state and federal policies (and funding), and providing them avenues to advocate for their needs and rights. With four locations across Central Alabama – Birmingham, Blountsville, Cleveland, and Irondale – and lifelong opportunities for care and support, the ACA is an accessible and reliable resource for many across this region.

An image of two individuals with disabilities smiling at the camera in front of a microphone.
Source: Yahoo Images

The HANDS program/ the Alabama Autism Assistance Program (AAAP)

            Another resource for children with neurodivergent disabilities is the HANDS program, or the Alabama Autism Assistance Program (AAAP). This non-profit organization provides many services, including therapy (both clinical and home sessions), school services, summer programs for early childhood development, and also seasonal services. Their therapy services are individually catered based on assessments of the child’s needs, in which they provide two-hour, one on one sessions by licensed therapists that track the child’s progress to provide the best resources. Their school services provide additional support during the school year in both academics and behavioral areas. Their summer programs provide a structured environment for children to socialize, learn and play with peers and their seasonal services offer support for children interested in sports. For children with disabilities, socializing with peers can be stressful, so having a safe environment to be able to socialize and make friends can help them become more confident individuals in the future.

Alabama Easterseals Society

With over 50 facilities nationwide and 12 facilities throughout Alabama, the Easterseals Society was founded in 1934 to raise funds to provide services to people with disabilities and advocate for their “right to live a normal life.”  The organization challenges the narrative around disability as a burden and instead focuses on empowering individuals with disabilities with skills and resources. They have services for pediatric rehabilitation, which include speech therapy, feeding therapy, occupational therapy, and physical therapy. They provide services for workforce development, such as career classes which provide training for specific careers, and summer internships to prepare high schoolers for the job market. They also have recreational opportunities, with an emphasis on camping, which can be very therapeutic and great for your mental health. As with the ACA, the Easterseals also have an advocacy element, which spreads awareness about disability rights, supports the passage of legislation centered around disability rights, and provides the space to conduct solution-based workshops within their local communities. They provide additional assistance for elderly people with disabilities, veterans, and caregivers, with both resources and recreational opportunities. Some locations (such as the one in Tuscaloosa) even provide transportation services for those who are unable to drive themselves to work and other places.

Transportation Help

An image of an individual in a wheelchair being hoisted onto the bus, with the assistance of the driver.
Source: Yahoo Images

Of the many challenges that people with disabilities face, transportation is a key issue. Many people with disabilities who can drive require specially tailored vehicles to fit their needs, while others who are unable to drive have to depend on family members, friends, or community volunteers to help them get from one place to another. Due to the fact that many people with disabilities have to visit their healthcare professionals regularly, this can be especially challenging. ClasTrans, (which stands for Central Alabama’s Specialized Transit) serves people with disabilities within Jefferson and Shelby counties who require transportation to various places, including medical appointments, grocery stores, entertainment venues, and so much more. This service is available for those living in urban and rural areas, and they can plan their trips ahead of time to know exactly what they can expect for the day. ClasTrans drivers also provide riders with assistance during the ride, including boarding the vehicle and transferring into their seats. ClasTrans is available for elderly members and those who are able to verify their disability status. While the services are not for free, their rates are affordable, with one-way trips starting at $4. Regular riders can also purchase fare credits, which they can pay ahead of time to avoid carrying exact change on their person each time they use the service.

Therapeutic and Recreational Opportunities

An image of a person in a wheelchair taking care of their horse.
Source: Yahoo Images

Red Barn

An organization focused on incorporating Equine Assisted Services for low-income children with disabilities, Red Barn was founded in 2012 to serve the children in their local community. Equine Assisted Services (EAS) is a professional field of collaborative services that incorporate interaction with horses into therapy, learning, and development for children with disabilities. EAS has three areas of focus: Horsemanship, Therapy, and Learning. Horsemanship deals with activities such as learning how to ride a horse, taking care of the horses, and participating in other equine-related sports and activities. These services are conducted by specially trained individuals who are licensed to provide this training. The second focus of EAS, therapy, deals with counseling services, occupational therapy, physical therapy, psychotherapy, and speech-language pathology. All these therapy options are equine-based, incorporating interaction with horses and equine discipline within these sessions, which are led by licensed therapists. Finally, their third focus, learning, centers on equine-assisted learning in education (such as learning life skills, academic skills, and character development), organization (such as learning team-building skills, leadership skills, and participating in group activities), and development (such as learning skills pertaining to problem-solving, decision making, critical thinking, and communication). For children with disabilities, learning and developing while caring for horses can be a powerful, healthy way to become strong, independent members of their community. It can help encourage them to explore new avenues of interest and expand their opportunities for employment and life fulfillment.  

Exceptional Foundation

Founded in 1999, the Exceptional Foundation provides children (and adults) with disabilities with social and recreational opportunities that allow individuals in the Greater Birmingham region to engage with others on a socio-emotional level. At first, the Exceptional Foundation began meeting at the Homewood Park and Recreation Center but later grew to include a gym, office space, youth center, and other spaces to provide recreational opportunities for their members. Today, the Exceptional Foundation has branched out to include much of Alabama and even parts of Georgia, following the same foundations laid out by the Birmingham facility. They offer many afterschool and summer programs for their youth, including sports events (to both participate in and attend), clubs, and other activities to provide enrichment such as art and music lessons. For adults, there are a variety of daily activities that are offered, including cooking classes, dancing lessons, music classes, gym time, art classes, field trips, and many more. While many of the resources listed above focus on advocacy, education, and support, this organization provides the space for entertainment and enjoyment, encouraging a fulfilling lifestyle for its members. For many people with disabilities, recreational activities can be stressful, and opportunities can be rare. Having the space to engage with others and learn together can help improve social skills and life skills, and can foster a sense of community.

Resources for people with multiple disabilities and or sensory disabilities

An image of a visually-impaired child reading in Braille
Source: Yahoo Images

United Ability

Established in 1948 by concerned citizens, United Ability began as a place to offer help and resources for people with cerebral palsy. As it grew and expanded, United Ability became a place that offers a full spectrum of services for all people with various disabilities and prides itself as being the place that connects people with disabilities to their larger community.

They provide early learning and early intervention programs for children, that focus on encouraging children to learn, grow, and develop alongside other children, while also providing their families with the help and resources they may need. Additionally, United Ability provides a clinic that focuses on meeting the medical needs of individuals with disabilities, which includes various forms of therapy, evaluations, assessments, and any technical assistance they may need. Furthermore, they also provide adult programs for recreation and enrichment and even offer employment services to adults with disabilities. This includes their United Ability Enterprise, a large umbrella under which many people with physical, developmental, and intellectual disabilities are employed. The businesses under this umbrella include Gone for Good, an off-site paper shredding company, as well as Outsource Solutions, a company that offers a variety of projects, including sorting items, housekeeping needs, mailroom needs, and more. It is located in Birmingham for those who are interested in the organization.

Alabama Institute for Deaf and Blind

One of the most respected institutions in the world for its all-inclusive approach, the Alabama Institute for Deaf and Blind (AIDB) spans all over Alabama, with campuses in Talladega, Birmingham, Mobile, Huntsville, Decatur, Montgomery, Opelika, and more. It was founded in 1858, by Dr. Joseph Henry Johnson, and his brother was among the first 21 hearing-impaired students he served that year. In 1932, AIDB was responsible for a project that employed 10 visually impaired seamstresses, a project that laid the foundations for the Alabama Industries for the Blind, Alabama’s largest employer of visually impaired individuals. Similarly, in 1968, a trade school for visually impaired individuals and audio-impaired individuals was created to provide adults who did not want to (or could not) attend college with the necessary skills to enter the job market. The AIDB provides services for visually impaired individuals, audio-impaired individuals, and those with multiple disabilities. AIDB serves children, as young as infants and toddlers, to adults of all ages, including seniors with sensory disabilities. Among the many services they offer is aiding children with sensory disabilities in schools. They focus on education and rehabilitation and provide a variety of services, including early intervention for children, and counseling, interpretation, and transportation for individuals of all ages.

Finally, students with disabilities that attend the University of Alabama at Birmingham (UAB) are provided with support through the Disability Support Services (DSS) program. Some of the services provided are note-takers, sign-language interpreters, transportation around campus for mobility-impaired individuals, and specifically catered support such as time extensions on tests and assignments. UAB also provides ramps and sidewalk cuts for easy access to those using a wheelchair or walkers, and many accessible parking spots at the Hill Center for visitors. UAB empowers its students to advocate for themselves and provides the necessary support they need to have a pleasant educational experience.

Part Three: The Different Approaches to Disabilities and the Future of Disability Rights

An image of a woman with disability in a sunflower field with a banner that reads, "nothing about us without us!"

This blog is part three of the conversation around disability rights, especially as it applies to children within the American school system. If you have not read the first two blogs in this series, I suggest you do so. The first blog focused on the historical view of disability and the American school system’s approach to children with disabilities. The second part mainly focused on the struggles that children with disabilities face within the school system, and how these struggles have been exacerbated due to the recent pandemic. This final part will focus on some of the approaches that have been taken in the past to address people with disabilities, and how they differ from a human rights approach. We will also examine how we can help on various levels, whether we want to focus on our personal abilities or advocate for a larger movement.

The Rights of Children with Disabilities

What rights are protected?

An image depicting five children holding signs that read, "the right to be heard", "the right to a childhood," "the right to be educated," "the right to be healthy," and "the right to be treated fairly."
Source: Yahoo Images

Much of what we have established in modern society in terms of children’s rights comes from decades of struggles, from implementing child labor laws to fighting for the right to an education. Similarly, the fight to pass the Americans with Disabilities Act (ADA) was one sure way to protect individuals with disabilities from discrimination. These rights and more are protected under the United Nations, both in terms of people with disabilities, (Convention on the Rights of Persons with Disabilities, CRPD), and with children’s rights (Convention on the Rights of the Child, CRC). Yet, these developments have only occurred in recent years; the ADA and the CRC were passed in America and the UN respectively, in 1990, and the CRPD was not adopted internationally until 2006.

The ADA, passed in the United States, protected the rights of people with disabilities from being discriminated against in all aspects of society. This was the first major legislation that protected people with disabilities from being denied employment, discriminated against in places of business, or even denied housing. In addition to these protections, the ADA required industries to be inclusive of those with disabilities through (among other things) taking measures such as building ramps and elevators for easy access to upper-level floors and building housing units with people with disabilities in mind. While America had passed the Individuals with Disabilities Education Act or IDEA (originally passed in 1975, and renamed in 1990) by this time, the initial form of this legislation allowed schools to place certain students with disabilities in special programs for no more than 45 days at a time. It was not until its improved form was passed in 2004 that provided the necessary financial and social infrastructure for its successful implementation.

The passage of the CRC, which applies to all individuals under the age of 18, focuses on non-discrimination, the right to life, survival and development, the State’s responsibility to ensure that the child’s best interests are being pursued, including ensuring that the child has adequate parental guidance. Additionally, it focuses on the child’s right to free expression, free thought, freedom to preserve their identity, protection from being abused or neglected, adequate healthcare and education, and includes certain protections the State is required to offer the children, including protection from trafficking, child labor, and torture. Article 23 of this Convention specifically focuses on the rights of children with disabilities, adding that these children have the right to the care, education, and training they need to lead a life of fulfillment and dignity. It also stresses the responsibility of the State to ensure that children with disabilities can live a life of independence and protect them from being socially isolated. Even though the UN passed this Convention in 2004, America is the only nation that has yet to ratify this treaty. This is why certain realities continue to exist, such as what is happening in Illinois.

Finally, we have the CRPD, which entered into force in 2008, only 15 years ago. Influenced by the ADA, the Convention on the Rights of Persons with Disabilities was passed to ensure that people with disabilities were fully protected under the law, including from discrimination, with the ability to function as fully pontificating citizens of their societies, with equal opportunities and the right to accessibility in order for them to lead a life with the dignity and respect afforded to their able-bodied counterparts. This convention had massive support and draws from both a human rights focus and an international development focus. What makes this convention unique is the implementation and monitoring abilities embedded within the treaty itself, and it includes non-traditional actors from communities (usually those with disabilities) with specific roles in charge of monitoring the implementation of this treaty. Unfortunately, the United States, while Obama signed the treaty and passed it to the Senate for their approval in 2009, has yet to fully ratify the CRPD treaty as well.

Some Approaches to Disability Rights

Upon understanding the various nuances of this conversation, we can now explore the three different approaches to defining disability in society. These approaches examine the issues that people with disabilities face and provide models influenced by differing fields of expertise. Many within society view disability as a medical issue and their solutions to the struggles faced by people with disabilities are medically focused. Similarly, others believe that disability is an issue of how society is structured, and their proposals for solving these issues lie within the realms of reshaping society to be more accessible to people with disabilities. Still, another approach built upon the foundations of human rights, focuses on the individual first, and the disability as an extension of their individuality. We will explore these three approaches and their pros and cons.

Approach 1: Medical Model of Disability

An infographic depicting what the medical model of disability stands for. At the center is an individual with arrows pointing to them to place the full responsibility of being disabled on the individual itself.
Source: Yahoo Images

            As mentioned above, some people view disability as a medical issue, and this approach can be categorized as the medical model of disability. This means that they believe that the “problem” of disability belongs to the individual experiencing it and that disability comes from the direct impairment of the person. The focus of this approach is to look for medical “cures” for disability, which can only be provided by medical “experts” based on the specific diagnosis. While it may be true that individuals with disabilities require medical help from time to time, their entire existence does not revolve around this notion of viewing disability as an illness. The focus here is to “fix” the person with disabilities, so they can become “normal” again. This approach also makes use of the “special needs” rhetoric, which can result in the isolation and marginalization of people with disabilities.  Media plays a big part in portraying people with disabilities as weak or ashamed of their disability, which can invoke fear or pity for people with disabilities within the larger society.

Approach 2: Social Model of Disability

A cartoon image to represent the social model of disability. In the image, there are many circular characters attempting to enter a square entrance, and cannot fit in. The gatekeeper informs them to change in order to fit into the system, and they reply back that the system could be changed instead to accommodate them.
Source: Yahoo Images

            Another approach that has been proposed is what is known as the Social Model of Disability. In this approach, the “problem” of disability is seen as a result of the physical and social barriers within society that exclude people with disabilities from fully participating in their society. Disability is seen as a political and social issue, and the goal of this model is to be more inclusive and recognize the prevalence of disability within our societies. This means looking closely at the ableist social institutions and infrastructures present within society and attempting to address these manmade challenges posed by people with disabilities. This model recognizes the social stigma around disabilities and recognizes people with disabilities as differently abled rather than viewing them as incapable of living an independent lifestyle. This approach places individuals with disabilities on a spectrum rather than the two categories of disabled and able-bodied. The goal of this approach is to be socially inclusive of all individuals, regardless of their disabilities.

Approach 3: The Human Rights Model of Disability

An image depicting various individuals with the saying, "Nothing about us, without us, is for us" around them.
Source: Yahoo Images

Finally, there is the Human Rights Model of Disability, which builds upon the foundations laid out by the Social Model of Disability and the Universal Declaration of Human Rights (UDHR). In this approach, the focus is on viewing the individual with a disability as a human first, recognizing that disability is a natural part of humanity that has existed as long as humans have been around. While it shares a lot of similarities with the social model, the human rights approach emphasizes not only the right of every individual to be treated equally before the law but also stresses that a person’s impairment should not be used as an excuse for denying them rights. This is essentially what the CRPD centers around, and the main goal of this approach is to ensure that people with disabilities have equal opportunities and protect their right to fully participate in society, politically, civilly, socially, culturally, and economically.

How Can We Help?

A cartoon image with EQUAL on the top, and many characters lined up with shirts that have individual letters on them that spell out "RIGHTS" below it. Below them is the phrase, "human beings are born free and equal - Universal Declaration of Human Rights 1947" on the bottom of the image.
Source: Yahoo Images

On the Internation Level

While the United Nations has a convention that focuses on protecting children’s rights, it is highly debated whether these treaties are being enforced around the world. Child labor is still common in various places around the world, including right here in Alabama. While it can be argued that the US has not ratified the treaty and that is why the UN cannot do anything about this issue, there are other places that have ratified the treaty that still places children in dangerous working conditions and face no real repercussions from these decisions from the UN. In 2019, many tech companies were sued for their use of child labor in other countries to mine the precious minerals they require to produce their devices. Many textile companies within the fashion industry use child labor in nations that have ratified the children’s rights treaty. While the United Nations is trying its best to protect and promote the rights of vulnerable communities, it has not been able to enforce these treaties and regulations, and as a result, atrocities against those vulnerable communities, (including children), continue to occur. How can we as human beings, ensure that all children are protected from harm, not just those able-bodied, living in wealthier nations? This is something that needs to be addressed, and it requires the cooperation of many different nations willing to put their differences aside and work together to find a solution.

On the Domestic Level

As we explored in the human rights model of disability rights, it is the responsibility of society to provide equal access to all its citizens. This includes its citizens who have disabilities, and not doing so would discriminate against those who have disabilities and violate the Americans with Disabilities Act. This means that both on a national and local level, our infrastructure needs to be updated with an inclusive mindset that makes the roads safer and more accessible to all the citizens using them. As a state, Alabama could not only fix the infrastructure, but also pass bills to ensure that people with disabilities receive the care they need, including employment opportunities, medical assistance, food assistance, and any financial help they may require. Furthermore, on a national level, the police (or another department focused on social work) can be better trained to recognize the various disabilities, both visible and invisible, so people with disabilities are not wrongfully imprisoned for “behavioral” issues. This training would help erode the school-to-prison pipeline that has replaced disciplinary standards in American schools and make way for a brighter future for children with disabilities. Finally, the United States can, at the bare minimum, ratify the Convention on the Rights of the Child, signed into existence in 1990 by member states of the United Nation. As we mentioned earlier, the United States is the only nation in the world that has yet to ratify this treaty.

On the Individual Level

We can all be more mindful of our actions and our ableist mindsets. Next time you walk down the street, pay attention to the roads and sidewalks. Are there any sidewalks for people with disabilities to use safely? Are there curb cuts, and are those curb cuts freely accessible or are they blocked? How accessible are public buildings such as restaurants, storefronts, or even the DMV? Are there enough parking spots allotted to people with disabilities, and are those spots easily accessible, or blocked off by other vehicles? Thinking outside of an ableist mind frame is the first step toward being more inclusive of people with disabilities. It might seem like a powerless and pointless step to take, but the more you start to notice the ableist structures within society, the more you will want to speak up about these issues the next time you have the opportunity. You will also be more mindful of your own ableist actions and how they may have unintended consequences. If you are a parent, you have the ability to question your school’s practices concerning children with disabilities and offer support to the children and their parents. As an individual, you can also contact your representatives to pass legislation that would empower people with disabilities to live independently. As a society, we need to get past the stigmatization of this group and normalize disability being an innate part of being human.