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.