Tag: disability

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. 

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.

The Shift from “Autism Awareness Month” to “Autism Acceptance Month”

The Autism Society of America, the United States’ oldest leading grassroots autism organization, is celebrating Autism Acceptance Month (AAM) in April 2021. This month was previously known as Autism Awareness Month, but this year, the Autism Society is taking to social media to assist it in changing the title to Autism Acceptance Month.

AAM
Autism is a developmental disorder that affects 1 in 59 Americans as of 2020. (Source: Yahoo Images)

In 1970, the organization launched an ongoing national effort to promote autism awareness and to assure that all autistic people are able to achieve the highest quality of life possible. The first annual National Autistic Children’s week commenced in 1972, which evolved into AAM. This year’s campaign is titled “Celebrate Differences,” and it is “designed to build a better awareness of the signs, symptoms, and realities of autism.” The 2021 focus is to “provide information and resources for communities to be more aware of autism, promote acceptance, and be more inclusive in everyday life.” With the prevalence of autism in the United States rising from being 1 in 125 children (2010) to 1 in 59 children (2020), the need for AAM is greater than ever.

So why the shift from Autism Awareness Month to Autism Acceptance Month? Christopher Banks, President and CEO of the Autism Society of America, puts it like this: “While we will always work to spread awareness, words matter as we strive for autistic individuals to live fully in all areas of life. As many individuals and families affected by autism know, acceptance is often one of the biggest barriers to finding and developing a strong support system.” The shift in terminology fosters acceptance to ignite change through improved support and opportunities in education, employment, accessible housing, affordable health care, and comprehensive long-term services. Acceptance is so integral that the Autistic Self Advocacy Network (ASAN) has been referring to April as Autism Acceptance Month since 2011, expressing that accepting autism as a natural condition is “necessary for real dialogue to occur.” The Autism Society of America is also advocating the federal government to officially designate April as “Autism Acceptance Month” since there has never been a formal designation for AAM.

The United Nations has, however, designated April 2nd as World Autism Awareness Day that is commemorated internationally. This year, the UN plans on hosting a virtual panel discussion titled “Inclusion in the Workplace: Challenges and Opportunities in a Post-Pandemic World” on April 8, 2021. The panel will consist of individuals on the autism spectrum who have personally experienced challenges in the employment market, especially in light of the COVID-19 pandemic.

AAM
The UN designated April 2nd as World Autism Day. (Source: Yahoo Images).

 

Acceptance is something the global population has been and continues to struggle with, but engaging in conversation and learning about one another’s perspectives, we can individually become accepting. And if the global population decides to embrace such a philosophy, our world can be filled with more love and acceptance and less hatred and stigmatism. Let us all aim to be aware and accepting of the global autism community as well as others. It starts with you and educating yourself.

Breathing Lessons: Disability Rights in the Wake of COVID-19

The novel coronavirus (COVID-19) has provoked an unprecedented reality for much of the global population by streamlining widespread bureaucratic frustration, health anxiety, and social distancing. Most people know that older adults and people with underlying health conditions are disproportionately affected by COVID-19, although many people fall under both these categories and identify with a disability. Also, due to the limited resources available to treat people with COVID-19, concerns have emerged about who receives what type of care. This would force health providers with the grim task of dictating whose lives are worth saving. This blog addresses concerns about rationing care amid the influx of COVID-19 patients and how this might affect the largest minority group in the United States (26%) and world (15%), people with disabilities.

Word Health Organization suggests COVID-19 is particularly threatening to people with disabilities for a list of reasons: (1) barriers to implementing proper hygienic measures, (2) difficulty in social distancing, (3) the need to touch things for physical support (e.g. assistance devices; railings), (4) barriers to accessing public health information, and (5) the potential exacerbation of existing health issues. These issues add insult to injury because, even without COVID-19, people with disabilities by-and-large receive inadequate access to health care services. This is largely due to the competitive nature of health systems which value profit maximization and, thus, disadvantage people with disabilities as consumers in the health care market.

Recently, select states and hospitals have issued guidelines for health providers that would potentially deny people with disabilities treatment for COVID-19. Two entities, Alabama Department of Public Health (ADPH) and Washington State Department of Public Health (WSDPH), have recently come under scrutiny because of their efforts to fulfill such guidelines.

ADPH’s Emergency Operations Plan suggests that ventilator support would be denied to patients with “severe of profound mental retardation”, “moderate to severe dementia”, and “severe traumatic brain injury”. This controversial protocol has recently grabbed the attention of Alabama Disability Advocacy Program and The Arc thus leading to a complaint with U.S. Department of Health and Human Services Office for Civil Rights (OCR) regarding discrimination toward people with intellectual and cognitive disabilities.

With Washington notoriously being one of the first COVID-19 hotspots, WSDPH and the University of Washington Medical Center have come under fire for their plans to develop a protocol that would allow health providers to access a patient’s age, health status, and chances of survival to determine treatment and comfort care. These efforts have been confronted by Disabilities Rights Washington with their own complaint to OCR that declares any medical plan that discriminates against people with disabilities effectively violates the their rights and is, therefore, unlawful.

OCR swiftly responded to these concerns, as well as those from Kansas and Tennessee, by stating that, even in the case of pandemics, hospitals and doctors cannot undermine the care of people with disabilities and older adults. OCR Director Roger Severino exclaimed, “We’re concerned that crisis standards of care may start relying on value judgments as to the relative worth of one human being versus another, based on the presence or absence of disability,” and “…that stereotypes about what life is like living with a disability can be improperly used to exclude people from needed care.”

Also, with New York currently having most of the U.S.’s confirmed COVID-19 cases, they may very well be the first state to face the imbalance of available ventilators and patient demand. Disability advocates have recently decried verbiage in New York’s Public Readiness and Emergency Preparedness (PREP) Act that could provide immunity from civil rights for some patients. Thus, U.S. state and federal powers are playing tug-of-war with the status of disability rights during the COVID-19 crisis.

Not Today #COVID19 Sign Resting on a Wooden Stool.
Not Today COVID-19 Sign on Wooden Stool. Source: Pexels, Creative Commons.

However, these concerns are not limited to the U.S. In the developing world, many people with disabilities are segregated from their communities in overcrowded facilities, while thousands of others are shackled and incarcerated. This weak enforcement of disability rights positions people with disabilities, in countries such as Brazil, Croatia, Ghana, India, Indonesia, and Russia, at-risk of further inhumane treatment by receiving limited or no appropriate care related to COVID-19. As a result, Human Rights Watch urges state and local authorities to return these populations to their families and demand they provide needed support and services within their communities.

Nearly every country in the world has ratified the United Nations’ Convention on Rights of Persons with Disabilities (CRPD) which aims to fulfill the human rights and fundamental freedoms of people with disabilities. More specifically, Article 25 of CRPD suggests people with disabilities have the right to non-discriminatory health care and population-based public health programs. Thus, nearly every person with a disability around the globe is associated with a governmental power that claims to be dedicated to fulfilling the promise of CRPD. However, in the wake of COVID-19, will these words be put into action?

These unprecedented events are a turning point for how we view our bodies, health, and communities. This is also an opportunity to view the world through the perspective of those in your community such as people with disabilities who represent an array of impairments, challenges, and experiences. Despite boredom and apathy being at the forefront of many people’s isolation, images of life versus death surround others, and for a good reason. In these decisive weeks, and likely months, there has never been a greater time for people in the U.S. and abroad to acknowledge that disability rights are human rights.

Golf and Life Lessons: The Dennis Walters Story

On Wednesday, February 5th, the Institute for Human Rights co-sponsored an event alongside College of Arts and Sciences and Lakeshore Foundation to present World Golf Hall of Fame inductee Dennis Walters. During his lecture, he addressed his passion for golf, experience with disability, and journey of perseverance.

Raised in New Jersey and playing college golf at the University of North Texas, Walters had dreams of being on the PGA Tour. Amid his burgeoning career as a professional golfer, Walters experienced a golf cart accident that left him paralyzed from the waist-down. Following the accident, Walters underwent four months of excruciating rehabilitation, peering at the golf course across the street with a desire to drive a ball across the green. Although his doctor claimed he would no longer play golf, but Walters’ vision suggested otherwise.

Following his rehabilitation, Walters moved back home with his parents in New Jersey while he became accustomed to his new way of life. One day, he finally mustered the courage to swing a golf club. With help from his father, they had a makeshift system that included a pillow, waist strap, rope, and a tree to assist with Walters’ swing. As a result, Walters was hitting golf balls as he did before which kept his golfs dreams alive. The first time Walters played on a course after his accident, he received cheering support from fellow golfers and, soon after, a re-purposed bar stool for his golf cart. Thus, The Dennis Walters Golf Show was born.

However, not everyone was originally thrilled about Walters’ show. After his father wrote a letter to Jack Nicklaus and told him of his son’s ambition, Walters’ career took off. Although Walter’s show is not just any golf exhibition, it’s a performance! His show includes golf shots with a three-headed club, fishing rod, radiator hose, gavel, left-handed club, crooked club, and tall tee as well some bad jokes and a four-legged sidekick. After more than 40 years, Walters has traveled over 3 million miles and done over 3,000 golf shows for fans near and far.

Walters exclaimed, “There’s no expiration date on your dreams” and offered the crowd his five P’s for success:

    1. Preparation (establish a plan)
    2. Perspiration (hard work pays off)
    3. Precision (stay focused)
    4. Passion (live what you do)
    5. Perseverance (stay on the path or else the other four don’t matter)
This is a picture of Walters posing with members of UAB Men's and Women's Golf teams.
Walters with members UAB Men’s and Women’s Golf teams. Source: UAB Institute for Human Rights

Walters asked himself, “Why have this dream?”. At times, he felt entirely hopeless about golfing again. However, golf was like therapy to him, both mentally and physically, which he claimed was better than medicine. He then closed by expressing, “The good about golf is the people you know”, which highlights the importance of inclusion and acceptance of people with disabilities on and off the green.

Disability Advocacy and Technology in the 21st Century

Images of The Gang of 19 and “Capitol Crawl” will forever be remembered as pivotal moments in the U.S. disability rights movement alongside international achievements such as the first Paralympic Games in Rome, African Decade of Disabled People, and UN Convention on Rights of Persons with Disabilities. There are those who foster the value-based assumption that picketing, chanting, and public fervor are the appropriate methods to fighting the good fight. However, as digitalization rapidly enters our homes, schools, and places of work, modern technology offers a myriad of new ways to advocate for the rights of people with disabilities, namely social networking platforms and phone apps.

Many of those who engage with social networking platforms have heard of social media subcultures such as Asian-American Twitter, Black Twitter, and Feminist Twitter. These digital subcultures often address sociocultural issues related to their communities and galvanize captivating hashtags, like #BeingAsian, #BlackLivesMatter, and #MeToo, that take the mainstream media by storm. Among, and often intersecting with, these social causes is a growing phenomenon that could be referred to as Disability Twitter. Here, disabled activists share individual narratives coupled with hashtags, such as #AbledsAreExhausting, #DisabledAndCute, and #ThisIsAbleism, as well as address cultural, social, and political issues affecting the disability community through sentiments like #CripTheVote (accessible voting), #DisabilityTooWhite (limited representation of people of color with disabilities), and #SuckItAbleism (plastic straw ban). Such efforts have also been extended to social media platforms such as Facebook and Instagram, further capturing the attention of disability rights to internet users worldwide, generating dialogue and solutions that relate to accessibility.

smartphone. Source: pixabay.com, Creative Commons

With two-thirds of the globe connected by a mobile device, usage of phone apps has become the norm for many people. While many people use such apps for daily tasks and leisure, others utilize these platforms to amplify justice-related causes, namely access for people with disabilities. For example, Wheelmap is a service that allows users to locate and mark accessible places in seven languages. One does so by rating a respective space with a traffic light system that indicates green markings are wheelchair accessible, yellow markings have restricted wheelchair access, and red markings are not wheelchair accessible. Voice of Specially Abled People (VOSAP) is an India-based organization who created a phone app with the same name which crowdsources accessibility data so it can be used to inform community leaders and promote awareness. VOSAP also allows users to make an action pledge that supports people with disabilities so communities can correspond with allied parties. Parking Mobility is another phone app that offers a self-reporting mechanism, although this service allows users to report abuse of accessible parking spots. For partnering communities, such reports are forwarded to local law enforcement and citations are mailed to the registrant of the vehicle. Please contact Parking Mobility to inquire about getting your community involved in this program. There are also many other phone apps designed for personal assistive use such as Be My Eyes (navigation for blind and visually impaired), RogerVoice (subtitled phone calls), Miracle Modus (self-relief for Autistic persons), and Medication Reminder (people with Alzheimer’s and dementia). As a result of these diverse phone apps, there are multiple ways for people to self-advocate as well as spread information about accessibility.

As demonstrated, social media and digital technology have engendered revolutionary ways to address issues salient to the disability community, allowing self-advocates and allies to communicate about current challenges, successes, and resources. Therefore, simply opening your computer, tablet, or phone to navigate these issues, alongside other intersecting causes, shines a brighter light on the importance of disability rights, access, and representation in the 21st century.

Keep up with the latest announcements related to the upcoming Symposium on Disability Rights by following the IHR on Facebook, Twitter, and Instagram.

International Day of Persons with Disabilities 2018

Today, December 3, 2018, is the International Day of Persons with Disabilities (IDPD), an observance promoted by the United Nations (UN). This year’s theme, “Empowering persons with disabilities and ensuring inclusiveness and equality,” accommodates the 2030 Agenda for Sustainable Development’s pledge to “leave no one behind” which envisions sustainable urbanization, namely through a smart-city approach that prioritizes digitalization, clean energy, technologies, and service delivery. Such ambition is salient to persons with disabilities because, above all, achieving these goals will result in communities that are more accessible and inclusive for everyone.

It is argued the main contribution to why persons with disabilities have been excluded from public life is the practice of the medical model of disability (MMD) which embraces the perspective of non-disabled persons, reducing persons with disabilities to dysfunctional people in-need of medical treatment, with emphasis on normative functioning of the body. As a result, persons with disabilities are often assigned a sick role that exempts them from activities and expectations of productivity, leaving them as passive recipients of medical goods and services. These medicalized expectations of normality, restoration, and functional independence can devalue the lived experiences of persons with disabilities, thus inviting discrimination into their daily lives.

On the contrary, the social model of disability (SMD) challenges the knowledge/power differential employed by medical authorities and suggests empowerment for persons with disabilities, ultimately strengthening the patient role and influencing changes in treatment paradigms. Furthermore, the SMD argues that social practices are what disable persons with impairments, placing many persons with disabilities into isolating circumstances and preventing full civil participation. Whether it be employment in Alabama or being a refugee in Kenya, the SMD challenges the MMD by suggesting persons with disabilities are an oppressed group that experiences discrimination and deserving of equal treatment.

On December 13, 2006, the UN adopted the Convention on Rights of Persons with Disabilities (CRPD), an international agreement which details the rights of persons with disabilities and lists codes for implementation, suggesting both states and disabled people’s organizations (DPOs) are to coordinate to fulfill such rights. In the following years, nations spanning the globe have ratified the CRPD, such as Jordan (2008) and Ireland (2018), thus strengthening protections for persons with disabilities. Although the United States is one of the only nations to have yet ratified the CRPD, this international document is largely modeled after the Americans with Disabilities Act (ADA), signed in 1990, which prohibits discrimination toward persons with disabilities. As a result, we are only seeing the beginning of what is to come for accessibility and inclusion for persons with disabilities, both domestically and globally.

Disabled people celebrate the passage of The Rights of Persons with Disabilities Bill, 2016 by the Lok Sabha, in New Delhi. Source: Hindustan Times, Creative Commons

 

To commemorate IDPD 2018, the Institute for Human Rights is holding a blog series today that addresses access, inclusion, and representation for persons with disabilities, namely through the influence of media and power of politics.

“Let the shameful wall of exclusion finally come tumbling down.” – George H.W. Bush at the signing of the ADA

Old Habits Die Hard: The Self-Perpetuating Cycle of Ageism

Most of us have been told at some point to respect our elders. Opening doors, assisting in street transit, carrying groceries — all of these social niceties are expected to be paid specifically to older members of society. Respect for elders seems to occur universally as a cultural norm. Korean culture joyfully celebrates the one’s sixtieth birthday as the passage into old age, while honorific suffixes such as “-ji” in Hindi and “mzee” in Swahili indicate longstanding cultural respect for one’s elders. Some Ecuadorian cultures believe that their elder shamans, or mengatoi, become powerfully magical as they age (Jacobs). China even made it illegal to neglect one’s parents, outlining the legal duties of adult children to include frequent visitation and “occasional greetings” (Wong). Older people in America engage in vigorous self-advocacy, making the AARP one of the largest interest groups in the nation at nearly forty million members.

Happy Parishioners. Source: Joonas Tikkanen, Creative Commons.

So why then does society reflect the exact opposite of these norms? Old people are treated as feeble, unfortunate beings who are shown courtesy in public and yet face widespread discrimination. Both pernicious and insidious, ageism is defined as “the stereotyping and discrimination against individuals or groups on the basis of their age; [forms of ageism can include] prejudicial attitudes, discriminatory practices, or institutional policies and practices that perpetuate stereotypical beliefs” (World Health Organization). Ageism is an “ism” that is just as socially impactful as other forms of discrimination, yet the topic is rarely addressed and often disregarded. Despite lack of discursive engagement, ageism is a unique type of social discrimination in that it can transcend all other human identities. The process of aging affects every human being regardless of one’s sexuality, race, and political ideology. Most of us will eventually pass the cursed line that society demarcates between youth and old age and must suffer from the hostile, deeply discriminatory system that we ourselves once benefited from in our youth — and what a pervasive system it is. Surveys show that a whopping 80% of people over sixty have experienced some form of ageism (Dittman). Tad Friend supplies this neatly unpacked explanation in an article published by the New Yorker:

“Like the racist and the sexist, the ageist rejects an Other based on a perceived difference. But ageism is singular, because it’s directed at a group that at one point wasn’t the Other—and at a group that the ageist will one day, if all goes well, join. The ageist thus insults his own future self.”

The Long Road. Source: Hansel and Regrettal, Creative Commons.

In just two years, it is predicted that more people will be over the age of sixty-five than under the age of five for the first time in Earth’s history (United States Census Bureau). In fact, according to the United Nations, the number of older persons is increasing more rapidly than other age group. This phenomenon is known as the “graying” of a population, and constitutes an urgent issue for affected countries. As people age, they become less able to physically care for themselves and usually exit the workforce at some point to retire for the latter part of their lives. As health conditions do generally worsen with age, the demand for medical and/or personal support services grows as older people continue to age and retire.

This becomes an issue when the size of a country’s workforce becomes insufficient to fill the demands of service-dependant older people. In nations with large workforces, the opposite issue — lack of opportunity for employment — still disproportionately harms older people. Many industries, particularly in America, push out older applicants and terminate veteran employees in favor of younger options. As industry culture has begun to tilt in favor of youth, older people have experienced a massive amount of workplace ageism. Nearly 65% of Americans between the ages of 45 and 60 had either seen or experienced age-based discrimination in the workplace (AARP). This may seem like a trivial issue, but unemployment is a dangerous state to endure at advanced ages. Worsening health conditions go hand in hand with both lower income and increased age; the combination of these factors can be fatal.

An elderly Sudanese womangets ready to receive her ration of emergency food aid.
Elderly Woman Receives Emergency Food Aid. Source: Tim McKulka/UN Photo, Creative Commons.

So why does ageism even exist? Princeton researchers found that most ageist arguments stem from issues with consumption (old people already consume too many scarce resources), identity (old people try to act younger than they are), or succession (old people had their turn, now they should move out of the workforce/society to make space for the new generation). All of these issues — consumption, identity, and succession — frame humanity in a way that associates one’s value with their usefulness to society. However, human beings should not be defined by their utility. Simply put, old people exist. They form one of the largest populations on the planet, and are rapidly growing. We cannot deny older people the dignity that we (supposedly) award to all else simply because they are perceived as “useless” to society. Human rights cannot and should not be applied conditionally.

This unfortunate phenomenon is surrounded by the related topic of disability. According to the 2016 Disability Statistics Annual Report, 35.4% of Americans over the age of 65 had a disability, which is over three times higher than the rate of working-age (18-64) Americans at 10.4%. Like advanced age, disability is also perceived as a barrier to social utility. Age and disability together form a potent one-two punch of compound discrimination, making older people with disabilities extremely vulnerable to abuse and exploitation.

An old woman sits at a window next to a yellow flower in a vase.
Untitled. Source: Bas Bogers, Creative Commons.

Elder abuse, as it is termed, is widespread but often under-reported. National rates are reported to be around 10%, though researchers at the prominent New York Elder Prevention Society found self-reported rates of elder abuse to be up to 24 times higher than the documented rate. Only 3% of  older people in New York officially reported any form of elder abuse, though nearly three-quarters self-reported that they have experienced neglect or financial, physical, sexual, and emotional abuse. This number may be inflated by the instances where individuals experience multiple types of abuse, making exact numbers more difficult to isolate. The most common forms of elder abuse are financial and physical/sexual abuse, which can occur concurrently.

Nursing homes, meant to protect and nurture their patients, are actually one of the most dangerous environments for vulnerable older persons with disabilities. The Nursing Home Abuse Center reports a nursing home abuse rate of about 44%, and a neglect rate of nearly 95%. Elder abusers are rarely prosecuted due to stigma, social isolation of the victim, lack of support services, inaccessible reporting, and proximity of abusers. Relatives constitute about 90% of elder abuse perpetrators, which often makes the victim reluctant to prosecute their own spouses, adult children, or other relatives.

Skin. Source: Victor Camilo, Creative Commons.

Direct abuse and neglect of the elderly is widely sustained by the deeply pervasive public attitude of hostility towards aging. Beauty products are regularly marketed as “anti-aging,” covering up the crows’ feet, varicose veins, liver spots and silver hairs that inevitably accompany a well-lived life. Most of the stigma is inevitably directed at aging women, as femininity carries the heavy burden of visual appeal. The cosmetic surgery industry is booming as women are pressured to appear as veritable supermodels long after the glow of youth has faded. Social media surrounds us with visuals of gorgeous, toned, smooth-skinned women who never seem to age a day, while the rest of us have to keep up with whatever products, surgeries or diets we can find.

Gone are the days where women past a certain age could relax into frumpy mom jeans and orthopedic tennis shoes without fearing judgment. Modern grandmothers now face the strenuous expectation to maintain a Helen Mirren-esque figure with the style and poise of Meryl Streep. Notably, these two women are some of the very few well-known older actresses; both have had to work tirelessly to achieve that notoriety, considering Streep’s record-breaking two-dozen Academy Award nominations and Mirren’s prestigious Triple Crown of Acting that has only ever been awarded to 23 people. It’s undeniable that Hollywood has a major problem with representation of women over thirty. Men in the acting industry get a few extra decades of “silver fox” stardom while women face rejection at first wrinkle.

An older couple links arms as they carry bags and walk together.
Lean on Me. Source: Amro, Creative Commons.

Ageism sometimes feels like an inescapable facet of society, but it shouldn’t have to be. Encouraging and celebrating old age will eventually serve to benefit everyone, as positive attitudes towards aging have been shown to increase lifespan by nearly eight years. Elderly people have had autonomy and dignity systematically stolen from them through attitudes of derision and pity– they are constantly viewed as either cantankerous burdens to society or doddering, wretched old fools.  One’s social contribution or lack thereof should not be a determinant in preserving human dignity. After all, human rights are for all humans, right?

From here, we have to do better on a global scale. Any success in reducing ageism requires confrontation of our own internal prejudices, since youth are the major perpetrators of age-based discrimination. The efforts we make today in reducing oppression for older individuals will directly impact our future experiences. Psychologists have found three major components essential to active engagement in fighting ageism:

  1. Social integration
    • Often, elderly individuals are unable to fully participate in society due to social hostility and lack of accessibility. Many of us have not been educated on topics relating to older people, and some even may find engaging with the elderly to feel uncomfortable. Fuller integration into society would foster respect for the aged community, as increased public presence of older individuals would promote culture of tolerance.
  2. Reduce cultural shame
    • Current media culture is incredibly toxic towards older people, and portrays the elderly in a negative light far too frequently. Advertisements should attempt to portray older people with respect to their human dignity, rather than the foolish, bumbling representations that are far too common in current media.
  3. Accept aging as a fact of life
    • Ageism often stems from personal fears of death and dying. This fear is incredibly common but damaging to both society at large and to individuals who hold them– ironically, negative attitudes towards aging have been shown to decrease lifespans. To combat this, old age should be normalized and celebrated.

Clearly, ageism is not something that can be eradicated at all once. It requires active change on both an institutional and personal level, as age-based discrimination is deeply ingrained in cultural attitudes and everyday interactions. Monumental as it may seem, ageism is still an issue that we must tackle if we ourselves are to experience old age with the dignity that all humans deserve. So remember to always respect your elders, whether out of regard for human dignity, self-preservation, or both.