Disability Justice

Karyn Pomerantz, 8-11-2022

Demonstration against cutbacks in health care

Covid-19 has re-emphasized the inequities of capitalism, displaying how it leaves the aged, those with chronic illness, and those with low-paying jobs who labor in close-packed, unprotected workplaces and live in crowded housing more vulnerable. Even without Covid-19, capitalists treat older workers, whether sick or retired as surplus, disposable people who drag down profits and require costly health care. Under capitalism, the ruling class values workers only by their ability to produce and thereby create profit.

This article will discuss the politics of disability from a class perspective that supports the participation and inclusion of all workers in society according to their abilities and preferences. It argues against creating another category of identity politics.

There are 61 million or 1 in 4 adults with disabling conditions in the US with the majority having mobility difficulties (CDC, https://www.cdc.gov/ncbddd/disabilityandhealth/index.html). One billion people or 15% live with disabilities globally (World Health Organization, https://www.who.int/health-topics/disability). In fact, all of us, except those who die of sudden death or trauma, are doomed to spend part of our life as disabled, mostly in old age.

While many live independently, others require continuous care at home or in assisted living and rehab facilities. Again, inequities exist. Assisted living can cost $7000 a month and more as needs increase. Again, one’s accumulated wealth determines whether one ends up in a luxurious or bare bones facility – and who lives, thrives or who dies. Providing good care allows people stuck at home or in institutions the means to contribute and reduce their isolation, anxiety, and depression.

The wealthy can purchase care that they need for family members or themselves whether it is home health services, assisted living, or nursing home care. For most of the elderly, Medicare provides post-hospital stay in short term rehab facilities or at home, but it only covers the cost of home-based services that require skilled nursing, not assistance with non-medical needs like dressing. If people of all ages qualify for scarce social security disability payments, they can receive home health aides who are essential for people with severe conditions, such as paralysis.

Medicaid pays for disability care if people pass stringent income eligibility requirements determined by the state. In 2022, Medicaid covered 10 million adults and children with disabilities. With the threat of cutbacks in Medicare and Medicaid, this care may end. Long haul Covid 19 will leave many more people with disabilities who require home care services.

Racism and the Oppression of Women

As with other health conditions, disability affects a disproportionate number of people oppressed by racism and sexism. People with disabilities who are black have higher rates of Covid-19 and related hospitalizations, greater rates of unemployment and Covid-19 related job loss, and lower levels of education.  Black families have less wealth (assets minus debts) than white families ($14,000 vs. $84,000) yet black individuals with disabilities only have $1300 worth of assets on average. Black and indigenous residents suffer high poverty rates with those living with disabilities suffering the most. Beyond the financial impact of these inequalities, approximately one-third to one-half of police murders are black people with mental illness and other conditions (https://time.com/5857438/police-violence-black-disabled/ ; https://www.nationaldisabilityinstitute.org/reports/research-brief-race-ethnicity-and-disability/).

Working class women endure endemic inequalities in pay, promotions, education achievement, housing insecurity, and hunger. These problems increase for women with disabilities. Only 1% of women with disabilities worldwide can read. Overall, 35 million women in the US and 44% of women over 65 years have a disabling health condition. Women and men with disabilities carry a greater risk of intimate personal (domestic) violence. Women face higher rates of physical and sexual violence including rape and stalking while men also have high rates of stalking and psychological abuse (https://www.sciencedirect.com/science/article/abs/pii/S1047279715001271?via%3Dihub). Daughters and wives of men with disabilities provide much of the care of family members with disabling diseases on top of raising children, cooking, cleaning, and working outside the home.  

In a society where capitalists treat workers and health care like commodities to be bought and sold, and shred safety nets, people are understandably afraid of and worried about losing their health and independence. The dominant US philosophy of individualism leads people with disabilities or illness to fear being a burden on others while healthy workers view the unwell as a burden on themselves. Yet in the end, everyone will experience disability, either as disease or injury at any age or as death in older age. Disability issues are universal.

Identity Politics or Class Perspective

Do we treat people with disabilities as another marginalized identity group who have overlapping intersections with “race,” gender, sexuality, and age? Or do we recognize people with disabilities as part of the working class who deserve our involvement in struggles to improve their lives, often improving our lives as well? Do we allow the ruling class to create another category to divide the working class? Do we restrict the fight for equity only to people with disabling conditions OR do we make this an issue of concern for and participation of all workers?

Identity politics and intersectionality have come to dominate the politics of social change for decades, replacing a commitment to working class unity. These concepts reinforce people’s allegiance to a particular characteristic or multiple characteristics, such as ethnicity, nationality, “race,” or gender. Often, only people with the characteristic are allowed to fully participate in the fight while others are reduced to “allies.”

For example, Black Lives Matter restricts political discussion and leadership to African Americans whereas communists such as Paul Robeson and Claudia Jones called for unity among all workers to fight racism under the slogan of “an injury to one is an injury to all.” This blog has numerous articles on multiracial solidarity and intersectionality.

As Pat Parker, the noted queer black woman author and activist, writes in Movement in Black (1999) andquoted in Hood Communist (7-2022):

If I could take all my parts with me when I go somewhere, and not have to say to one of them, “No, you stay home tonight, you won’t be welcome,” because I’m going to an all-white party where I can be gay, but not Black. Or I’m going to a Black poetry reading, and half the poets are anti-homosexual, or thousands of situations where something of what I am cannot come with me. The day all the different parts of me can come along, we would have what I would call a revolution.

Fighting Back for Disability Justice

The struggle for disability equity did not end with the passage of the Americans with Disabilities Act in 1990. Partly due to Covid-19 placing the public at greater risk of disability and exacerbating long-term illness, many groups of people over 60 years old and those with disabilities are demanding prevention and care rather than being treated as lives not worth living as the Nazi Party did. The Nazis began its extermination of “undesirable” people by labeling the elderly and mentally ill as “useless eaters” and murdering residents of nursing homes and psychiatric institutions. Advocates today refuse to surrender to government policies that threaten their lives.

504 Sit-Ins, 1977

Sit-in at Health and Human Services Office in San Francisco, CA

Inspired by anti-racist and anti-sexist struggles of the 1960s, a disability rights movement developed culminating in the militant 504 sit-ins in government offices in 1977 to demand more accessible environments, education, and inclusive laws. Spearheaded by Judith Heumann who lived with the effects of childhood polio, 125-150 people occupied the San Francisco Health and Human Services office for a month. As the government cut off electricity and other necessities, the occupiers improvised storing medications and tended to one another’s hygiene and medical needs. It was an inspiring multi-racial action led by women that involved everyone, including the Black Panthers who delivered food. In the end, they won their demands (The Power of 504, https://www.youtube.com/watch?v=SyWcCuVta7M and Heumann J. Becoming Heumann, Beacon Press, 2020).

Covid-19 Protections, 2020-

To protect the economy (profit), governments and businesses are promoting “normalcy,” including voluntary masking and vaccination. Even the American Public Health Association (APHA) will not require masks at its upcoming Annual Meeting. The CDC reduced the number of days to quarantine for people with Covid-19. Numerous advocacy groups are demanding protections for people with disabilities that also benefit everyone: mask and vaccine mandates; adequate indoor ventilation; social distancing; easy access to treatment with Paxlovid, monoclonal antibodies, and other treatments; social distancing; income support; stable quality housing; food security; health care; and home care services. The People’s CDC, a group of researchers, advocates, and public health workers, organized to counter the CDC’s recommendations and to disseminate science-based updates on the virus and information fact sheets.

Safer Schools and Section 504, 2020-

The Department of Education’s Civil Rights Division has called for comments to update Section 504 of the Federal Rehabilitation Act of 1973 that pertains to education. Angry about the voluntary use of masks and poor ventilation in schools, disability and parents are demanding safer schools and sharing their stories. Their priority demand is adequate ventilation to minimize the transmission of the coronavirus. The CDC estimates that 36,000 buildings nationally need ventilation upgrades at the cost of $1 million each or about $72 billion total.

Stop Nursing Home Closures and Cut-Backs, 2021-

Nursing homes and rehab centers suffer extreme understaffing and unliving wages. Union organizing and an alliance of patients and workers can improve these conditions. Unions, such as SEIU, 1199, the National Nurses Union (NNU), and the Union of Healthcare Workers are fighting for safe staffing to patient ratios and improved salaries (https://nuhw.org/).

In San Francisco, health activists and community residents fought against the closing of the Laguna Honda Hospital and Rehabilitation Center that:

“… serves as a safety net for patients with complex medical needs who are low or very low income and often have no other options for care. Many patients have complicated chronic medical needs along with behavioral health components (such as diagnosed mental illnesses and/or substance use disorders) and other social or behavior issues. (It) serves a broad audience in terms of both care and demographics, with more than 25 percent of our population identifying as African American, 18 percent as Latino and 20 percent as Asian.”

Earlier this year, the Centers for Medicare and Medicaid (CMS) threatened to shut it down leaving 600 residents without care. As of July 28, 2022 after city wide protests, CMS suspended the closing as the city revises its certification plans (https://sf.gov/information/laguna-honda-hospital-closure-and-patient-transfer-and-relocation-plan).

Update as of 8-15-2022

Laguna Honda Hospital transferred 50 patients to other hospitals far from Laguna Honda. Ten people died from “transfer trauma!” As one activist wrote, “Laguna Honda teaches us why all healthcare and public health under capitalism is chaotic and has terrible outcomes. … We need a new system with us in control, where every decision is for the working class.”

Transportation Access and Safety, numerous years-present

Public health advocates need to ensure safe transportation especially as more easily transmissible forms of the virus develop. Yet, airports and buses allow passengers and employees to ride unmasked, again endangering the lives of those most susceptible. Recently, Senior and Disability Action (sdaction.org, #no-body-is-disposable) activists in San Francisco forced the city to re-establish mandatory masking on its public transportation system, BART (https://www.youtube.com/watch?v=itrH1rBCNhE). 

In the metro Washington, DC area, paratransit employers went on strike for better pay and working conditions. Paratransit options are critical for people with mobility problems to shop and attend medical appointments and social engagements. Public health and anti-racist activists walked the picket line with Covid-19 recommendations. Unions have enormous potential power to demand equity in health, from safe travel to global distributions of vaccines.

Language

Many labels for people with disabilities, such as “addict” or “crazy,” are extremely disrespectful, marginalizing, and stigmatizing. Names for people over age 60 also range from elderly, old, seniors, seasoned, mature, and “illders” per The Cranky Queer. The term “disabled people” defines the individuals by their medical condition. People-first language, “people with disabilities” emphasizes the person, not the condition.

HIV activists initiated campaigns to change the language around HIV and AIDS. Instead of speaking about “HIV patients,” they insisted on using “people with HIV,” and replaced “addict” with “IV drug user.” Because of movements to use inclusive, respectful language, many organizations have developed style guides (https://ncdj.org/style-guide/).

Universal Design Approaches to Disabling Environments

Universal Design in the Kitchen

In the world of disability activism, the principle of universal design promotes the concept that environmental improvements for people with disabilities benefit all people:

Designing all products and the built environment to be aesthetic and usable to the greatest extent possible by everyone, regardless of their age, ability, or other factors (Ronald Mace. College of Design. The Center for Universal Design. Raleigh: NC State University. 2008).”

Also known as “Design for All,” it includes physical access and social inclusion with appeal to people of all ages and abilities. Common designs include:

  • curb cut-outs in sidewalks that allow wheelchairs and strollers to pass,
  • talking pedestrian signals to promote safety,
  • lower kitchen cabinets to permit storage and cooking,
  • ramps and automatic doors to foster easier access to buildings,
  • buses with kneeling steps to ease entry and exit
  • audiobooks for people to enjoy books, and
  • captions on digital media.

Beyond these physical and communication adaptations, everyone needs universal housing, employment, living wages, food, and health care to overcome the economic and social inequities capitalism inflicts on the world’s working class.

Sustainable Just Change

These struggles demonstrate how mobilizations can mitigate the conditions causing harm. They teach us how to work together, who our allies and opponents are. However, none can sustain reforms or address the capitalist determinants of viral diseases, such as industry farming, climate changes, and deforestation. None can eradicate the racism that impoverishes and kills millions around the world. We can only eliminate the massive disparity in wealth based on exploitation (profit making) that is expressed as racism, the oppression of women, imperialist wars, the absence of healthcare, and many other inequities when we remove profit and divide and conquer strategies by the capitalist system. As the authors of the upcoming book, Health Communism (Penguin House, October 2022), write:

“…we must not base the value of human life on one’s willingness or ability to be productive within the current political economy.”

 This huge achievement would offer tremendous opportunities to normalize the inclusion and care of people with disabilities and all others.

Read On

Wikipedia has a list of disability organizations at https://en.wikipedia.org/wiki/List_of_disability_organizations

Senior and Disability Action, https://sdaction.org

            Youtube on BART mask mandates, https://www.youtube.com/watch?v=itrH1rBCNhE

Cranky Queer, https://crankyqueer.org

National Center on Disability and Journalism. https://ncdj.org/style-guide/

 Schatzkin A. Health and Labor-Power: A Theoretical Investigation. International Journal of Health Services, 1978. https://doi.org/10.2190/FJ2T-YV6G-3MQD-D47R.

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