by Issy Orosz

As a disabled and queer young person, I wear several “hats” including: a final year high school student, a worker in the disability sector, and someone who has had multiple long-term hospital stays. During the pandemic, my collection of “hats” has filled my life with complexity, confusion, and intensity.  

COVID-19 made my life as a disabled person challenging. Before the pandemic, I relied on consistent supports to maintain my health and wellbeing, however, lockdowns demolished these resources and routines – almost overnight. 

In my last year of highschool, amidst COVID-19 and a failed governmental response, all my classes chaotically shifted online with limited flexibility and capacity for personal differences. This uprooted the foundation that I needed whenever my mental and physical health began to collapse. Instead of focusing on academic success, I was forced to accommodate an already inaccessible education system by lowering expectations of myself. 

These changes severely impacted my mental and physical health. Out of necessity, I sought psychiatric help. Again,even in crisis, after I found a doctor and was admitted to the hospital, I was required to accept and accommodate an antiquated medical system, where I was frequently misgendered, invalidated, and triggered. While I am grateful to have access to a place that guaranteed 24/7 food, safety, and support, I did not completely receive the help that I needed, and I was required to be admitted again, three months after my initial month-long hospital stay.  

Now, as I write this, in the third week of my second hospital stay, I am proud that I know that I am not well enough to leave yet. Yes, it is even more isolating being in a hospital during COVID-19, but I am not better. I am not well. Nevertheless, I am working on it, in arguably the hardest time to work on it, which, for me, is enough.

Despite the adversity faced in the education and medical systems, I have been immensely privileged to be employed as a lived-experience workshop facilitator in a youth disability advocacy service. In fact, I have even had the opportunity to take on extra hours to focus on a pandemic response project. 

Unlike in other areas of my life, the people that I work with are also disabled young people. This has meant that in response to the pandemic, equipped with the understanding and voices of disabled young people, my workplace has been extremely supportive, granting me the opportunity to successfully transition to remote working. Furthermore, when my capacity to work was altered, the organization accommodated and validated my needs.  

The failure of other institutions to meet my needs is apparent and frustrating, especially when juxtaposed to my employer.  

I am abundantly aware of the rarity of a situation as positive as mine in the context of work. Most work environments are just as inaccessible as other institutions. Yet, why should they be? By providing me with the resources and assistance that I needed, I was able to protect my health, contribute meaningfully to my work and the world around me, and succeed. If we provide disabled people the accommodations that suit our individual needs in all aspects of life, we can level the playing field and give us the opportunity to display and reach our potential.    

This period has been the hardest of my life. I have been the most unwell and unstable as ever while being ignored and put at risk by all except my employer.

I genuinely cannot tell you what next week will look like – let alone the end of 2020 and beyond. The nature of being disabled, especially during a time as extreme and unforgiving as this pandemic, is that we are underrepresented and asked to accept broken systems. I have seen that to its fullest extent. However, I will do as much as I can to make it through next week, the rest of 2020, and whatever exists past then. The disability community is strong, and with their support and strength, we can make our voices heard and create a more flexible, accommodating, and kind world, post COVID-19.

About the author

Issy (they/them) is a 17 year old queer and disabled person. They live in Naarm (or so called Melbourne, Australia). They work in the disability and youth space and frequently present and write about disability, education, queerness, social justice, and intersectionality, all from their lived experience. You can find them on social media @issyhay. Their website is issyhaywriting.webnode.com/

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About WID

The World Institute on Disability (WID) was established in 1983 as one of the first global disability rights organizational think tanks, founded and continually led by people with disabilities. WID works to advance the rights and opportunities of over one billion people with disabilities worldwide, bringing research and policy into action and operationalizing inclusion.

Our work centers around Digital Tools for Optimizing Community Living and Employment; Accessibility Solutions; and Excellence in Disability Inclusive Emergency Preparedness, Disaster Risk Reduction, and Climate Resilience and has included groundbreaking work in disability benefits, financial literacy, healthcare equity and social justice empowerment.  WID is a nonprofit 501(c) (3) organization recognized by the US Internal Revenue Service.

The Board of Directors and staff, over half of whom are people with disabilities, are respected national leaders in the disability rights field as well as in industry, government, and social services. This enables WID to bring a cross-disability perspective to the policy arena. Information on WID’s programs can be found at www.wid.org.

Position Summary

The Marketing and Communication Specialist position reports to the Director of Marketing and Communications and supports all WID external communication efforts. We seek a digitally savvy and creative marketing and communications leader to develop and execute our social media, influencer marketing, and email campaigns. You will be responsible for content/messaging development for the website, print, email, marketing collateral (content and graphic development), and all social media campaigns. You will also be responsible for graphic design and video production efforts, ensuring that all content is accessible and in alignment with our Guiding Principles: 

• Disability Led – Nothing About Us Without Us
• Intersectional and Globally Focused 
• Disrupting exclusion and accelerating radical inclusion
• Advancing Human Rights and Social Justice Across the Life Span, leaving no one behind
• Cross-Disability Movement Solidarity 
• Uncompromising Ethics, Integrity, and Accountability

Our team is small and nimble, so you’ll be able to get your hands dirty with every part of the marketing process and lead project assignments. You will need the ability to multi-task, work well in teams, respond quickly to project deadlines, and think like an activist AND business leader. If you enjoy a fast-paced environment, a great collaborative team culture, management that encourages you to grow to achieve your fullest potential, and an opportunity that makes a meaningful difference in people’s lives, we encourage you to apply!   

HOURS: 40 hours per week

Essential Functions

Please note this job announcement is not designed to cover or contain a comprehensive listing of all the activities, duties, or responsibilities required of you for this job. Duties, responsibilities, and activities may change at any time with or without notice.

Content Development

A portion of your responsibilities will be content development. We are looking for an exceptional content development professional to create content (copy and graphics) geared toward attracting, informing, and engaging allies, prospects, partners, and clients. You will be responsible for creating accessible content in multiple formats, including email campaigns, marketing collateral, video scripts and production, webinars, blogs, datasheets, and infographics used across various platforms. Your responsibilities will be:

• Write, proofread, and edit content across programs and organization-wide.
• Web pages; including White Papers, online articles, and blog posts.
• Videos; including developing scripts, filming, editing, making accessible, and posting. 
• Email marketing; developing email campaigns (copy and graphic images) and analyzing campaign performance to broaden WID’s brand presence and preference; producing quarterly newsletters, end of year and fundraiser campaigns, and other scheduled announcements. 
• Brochures/flyers and other one-page information handouts.
• Presentation decks promoting WID’s brand value and services.
• Creating graphics using Adobe Creative Cloud applications, including:
  • Premiere Pro
  • InDesign
  • Illustrator
• Developing graphics and videos for social media, reports, websites, print materials, and infographics.
• Video storyboarding planning and video development, graphic design/illustration, digital storytelling, increasing WID’s social media influence and engagement, and successfully writing and editing copy will be essential aspects of success.    

Social Media Communications

Your job will also entail enhancing our social media presence across multiple platforms. We’re looking for a rock star. A social media “influencer” or subject matter expert who is very skilled with a proven ability to develop, analyze, and execute campaigns that capture the attention, hearts, and minds of allies, prospects, partners, and clients. You will execute WID’s social media and influencer marketing efforts – translating business objectives into new campaigns, partnerships, and experiences while also providing the hands-on oversight to ensure timely and impactful program execution. You will need to possess a solid knowledge of social media trends and technology and a proven ability to champion new brand-building programs from concept through implementation. Your responsibilities will be:

• Grow WID’s presence on social media by creating content and posting regularly on WID programs and events. 
• Increase and maximize WID’s use of social media ads and other tools.
• Conceptualize, develop, and execute WID brand awareness and fundraising social media campaigns. 
• Analyze and report on the performance and efficiency of campaigns. Initiating and managing all social media campaigns from end-to-end on the following platforms:
  • Twitter
  • Instagram
  • Facebook
  • LinkedIn
  • TikTok
  • YouTube
• Keep abreast of assistive technology trends as it relates to social media.
• Develop social media relationships working with influencers and partners.
• Continuously monitor the social environment to recommend emerging social media platforms where WID should have a presence.   

Event marketing

You will also have the unique opportunity to represent WID as a brand ambassador by supporting our virtual and onsite conferences where you will engage with WID allies, prospects, partners, and clients. To be successful, you will need to be detail-oriented, manage multiple projects to conclusion, professional, responsive, service-oriented, and work independently with limited supervision. Your responsibilities will be:   

• Assist in planning, developing, and coordinating events by sending out solicitations, mailings, correspondence, and other pertinent materials.
• Work with WID team and volunteers on logistics leading up to and during the events.
• Willingness to travel to an onsite conference location, if needed.

Minimum Qualifications

• Committed to and demonstrated experience in lifting up and centering the voices and messages of multiply marginalized people with disabilities. 
• At least two years of social media experience developing content, analyzing results, and successfully managing campaigns on Twitter, LinkedIn, Instagram, and Facebook. 
• At least two years of experience developing and managing email campaigns with demonstrated results.
• Experience using M.S. Office Suite, Dropbox, Zoom, Survey Gizmo, MailChimp, and Google Analytics. 
• Experience with digital accessibility, JAWS, NVDA, Captioning, and other assistive technology.
• Experience with WordPress business and Adobe, specifically using Premiere Pro, InDesign, and Illustrator.
• Excellent writing, editing, and oral communication skills.
• Friendly, conscientious, organized, detail-oriented, results-focused, and punctual.
• Works well independently, takes the initiative.
• Responsive to quick project turn-around.
• Quick learner, ability to problem solve.
• Open to receiving feedback and learning new processes and skills.
• Bachelor’s degree or equivalent experience is needed.

Preferred Experience:

• Disability justice and international disability rights familiarity.
• Engaging young people and/or people with disabilities on social media. 
• Independent living philosophy and a keen awareness of the broader social justice movement. 
• Experience working for a nonprofit organization.

Further Details

Reporting Relationship: Director of Marketing and Communications

Status:  Exempt, full-time, generous benefits package

Location: Remote- must be eligible to work in the U.S. WID does not cover the cost of relocation, as this is a full-time remote position. 

Compensation:  Commensurate with experience 

Application Process

Send resume, cover letter, salary requirements, social media links, and references to: World Institute on Disability; email: Kat Zigmont, kat@wid.org and Reggie Johnson, Reggie@wid.org 

(WID acknowledges receipt of applications by email only)

Application Deadline: Open until Filled

Proposed Start Date: December 2020

Reasonable Accommodations

Address reasonable accommodation requests for the application/interview process to kat@wid.org.

All applicants eligible to work in the U.S. are encouraged to apply. In compliance with federal law, all persons hired will be required to verify identity and eligibility to work in the United States and complete the required employment eligibility verification form upon hire.

The World Institute on Disability is an equal opportunity employer with a commitment to diversity. Individuals will not be discriminated against regardless of race, ethnicity, religion (creed), national origin, age, sexual orientation, gender identity, gender expression, disability or veteran status, and other personal characteristics.

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by Luanjiao Aggie Hu

Disabled women account for one fifth of global population and over half among all people with disabilities worldwide. Global literature has often documented disabled women’s multiple disadvantages based on gender, disability, and oftentimes poverty status. Disabled women are considered a multiply marginalized population, in that their marginalization occurs based on gender, disability, and the specific experiences of women with disabilities. They often have less educational attainments, lower employment rates, less access to healthcare services, etc. Limited research on Chinese disabled women has further revealed the multitude of challenges they face. 

In China, Covid-19 surfaced in media in January, peaked in February, and seemingly came to an end in March. For months, Chinese people were under strict lock-down policies. News reported the surge of domestic violence against women during this time. How did Chinese disabled women fare in the pandemic? A Beijing-based organization – Beijing Enabled Sister Center realized the urgency and coordinated the distribution of sanitary pads and diapers for women with disabilities in need among other assistances. The organization also encouraged disabled women to share their experiences and stories during lockdown. As a Chinese disabled woman studying abroad, I contributed a piece detailing my own experience and perspective during Covid-19. As a researcher with disability, I took interest in the stories and studied the narratives from around 30 disabled women who were of diverse geographic locations, socioeconomic statuses and disability categories. In addition, I examined news on gender and disability in Covid-19 and talked to disabled women leaders to learn about the changes in their lives. Summarizing different ways in which disabled women were impacted, I realized that the women’s voices revealed more than what the literature documented.

To start, the narratives showed difficulties disabled women experienced in the crisis. At the threat of the pandemic, disabled women expressed their higher risk of infection and mortality. While navigating in a quarantined version of daily environments, vision or mobility impaired women found themselves at higher risk of getting infected due to assistive devices touching contaminated surfaces or use-of-touch in daily lives. Concerned about their underlying conditions and immunocompromised physiological statuses, disabled women voiced that they would not survive if infected. Some women had to cancel or delay their doctor’s appointments and/or personal assistant’s home visits in fear of increased exposure and possible infection. 

Second, disabled women faced challenges accessing information, supplies, food, transportation, and healthcare services during quarantine. When the pandemic hit, rarely any news channels in China provided sign language interpretation or closed captioning. In Hubei Province, the epicenter of the outbreak, the deaf and hard-of-hearing community lagged behind in obtaining COVID-related information; therefore, they experienced the lag in the purchase of necessary supplies to prepare for the quarantine. 

Due to lockdown policies and shortages of goods, some disabled women mentioned about running low on diapers and feminine hygienic items and feared for bedsores and other complications. Women with mobility impairments who lived alone found themselves in a dilemma when they tried to shop online in bulk. The items they purchased online could not be delivered to their homes due to strict quarantine measures: gatekeepers of apartment complexes and neighborhoods prohibited any entry of external visitors including delivery personnel. In one narrative by a disabled woman who resided in a rural village, she expressed worry about food shortages. 

Women also shared their negative experiences with accessing healthcare services during Covid-19. A woman in Taiwan found herself in an inaccessible hospital when she needed testing. She ended up staying in her wheelchair for the night with no accessible restroom to use.

Another major impact disabled women mentioned was economic, with income and job losses. Women experienced financial pressure as neither they nor their families could work for months. Some women in personnel roles were faced with either salary cuts or threats of losing their jobs. There were also women who were fired without any compensatory packages during Covid-19. Faced with cancellation of programs and funding, some disabled women organizational leaders had to reduce their own salaries to sustain their organizations. 

Despite the difficulties, I have especially observed great agencies and multiple roles disabled women exhibited in their natural settings (see images). In the narratives, women were caretakers, business owners, frontline essential workers, community organizers, volunteers, among many other roles. Disabled women took care of their elderly family members and young children during the quarantine. Many women stayed home and continued to work remotely. For example, disabled women customer service workers volunteered to support the huge demand at the surge of online shopping during Covid-19. Many disabled women joined a volunteer-based disability support network to assist with individual case support, creation of accessible information, and coordination of donations for local communities. Some disabled women shared how they had been ‘stay-at-home experts’ prior to Covid-19 due to inaccessible work environments, and they were able to provide counseling support to other people who were now forced to shelter at home and struggle with mental health during quarantine.

In my contact with disability activists and advocates in China, I realized that many of them were so swamped with working in the local communities that they often lacked the time, energy, or sometimes the tools to engage in documentation and research. In addition, with increasing visibility on gender and disability respectively, there has not been much research shared on the intersection of gender and disability. It is with this understanding that I took interest in conducting the research on Chinese disabled women throughout this pandemic. 

It is my hope that we see and acknowledge the personal agency disabled women have exerted, and the crucial roles they played in their homes and communities during Covid-19. The pandemic highlighted and exacerbated many existing challenges disabled women face in their lives. It is crucial that we work to remove the systemic barriers that multiply across intersections of marginalization, putting women with disabilities in doubly or triply disadvantaged situations. Additionally, it is imperative that disability-inclusive responses be put in place at times of emergencies and crises. Only through commitments and actions of inclusion and equity, can we ensure dignity and prosperity for all. 

Links to articles and images mentioned, in order of appearance:

Le Yirong-Disabled Sisters Story Group. “Women with Disabilities in the Epidemic: Epidemic Calendar of Overseas Education Doctors”, by Hu Luanjiao. May 13, 2020.

Le Yirong-Disabled Sisters Story Group.“Disabled women under the epidemic: I am from Wuhan, I am a deaf woman”, by Doudou Jun. February 25, 2020.

Le Yirong-Disabled Sisters Story Group. “Disabled women under the epidemic: Sign language broadcasts epidemic prevention news is so hard-core”, by DUDU. March 22, 2020.

Central News Agency. “The handicapped will be tested and isolated and sleep in a wheelchair, forced to dig in a hospital bed and become a nightmare”, by Chen Weiting. May 17, 2020.

Le Yirong-Disabled Sisters Story Group. “Disabled women under the epidemic: a different winter vacation”, by Shi Xuejiao. May 16, 2020.

About the author

LuanJiao Aggie Hu is a doctoral candidate at the University of Maryland, with a focus on disability studies, gender studies, and education for people with disabilities. She identifies as a person with disability, a feminist, and an activist scholar. 

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by Henrietta Bollinger

Mere days before New Zealand’s lockdown was announced, a journalist interviewed my flatmates and I about our concerns in the face of a pandemic.  She had done a lot of reporting on disabled community issues, so we trusted her. We glanced sidelong at each other, laughing into the phone on our kitchen table when she asked what we enjoyed doing.  I want readers to see you as people, you know?

Erin, Stace and I are all disabled community advocates.  Even our ginger cat Wilson is developing an international Twitter following of disabled and/or queer people we intersect with – invested in his mood, health, and hot takes. Our dinner table conversations can move almost imperceptibly from asking, Hey, how was your day?, to analyzing the relevant articles of the United Nations Declaration on the Rights of Persons with Disabilities. 

The day we were interviewed, the fear had just become palpable to me – particularly among my disabled friends. We worried about everything from access to food to how the health system would cope.  I worried about getting the support I need twice a day. We had started stocking up on PPE – a good move given that none was supplied to us until a week before lockdown ended. 

Our flat has been together for about a year now. We have a home that actually meets our needs – something we don’t take for granted. There is nothing like the Americans with Disabilities Act to regulate housing accessibility here. The housing crisis is acute – we rage while watching news items about disabled kids living in garages.  My flatmates tell me they’re never moving out.

Living here involves a lot of laughter– in recognition of each other, of living daily with the absurdity of ableism and hetero/cis-normativity. We’re a support network for each other. Like many households, we wouldn’t escape the lockdown without putting some pressure on this precious thing, but for me, it was still the best place to be for weathering this unknown. 

The wider word felt heavier than the small one under my roof.  Solidarity can also feel like heartbreak. I cried over Facebook posts about the Welsh surgery that wrote to disabled patients asking them not to call Emergency Services, implying this would be more considerate of others. I felt sick reading about a wave of Covid cases in a New York home for disabled people. I stayed up late writing a letter to the British Minister for Disabilities but lost the nerve to send it. I turned my attention to my own situation. 

Our Government came to power positioning itself as a compassionate administration. I am grateful for this. I am relieved about the prioritization of people over economy that has characterized the response. Many people are emphasizing that during this time, choosing kindness is essential. Kindness in the context of the pandemic is most simply understood as helping people more vulnerable than yourself.  

All the same – the rhetoric of kindness is hardly instantly reassuring to disabled people. Kindness towards us is so often linked to charity and paternalism. It positions us as dependent upon the whims of the non-disabled world to both determine, and grant us our basic needs. I told our interviewer that New Zealand’s response couldn’t simply be about kindness, it had to be about rights. 

 The lawsuit, Borrowdale v Director-General of Health, questions the legality of our lockdown, claiming that although the order was necessary, it violates the rights of freedom of movement and assembly, which are guaranteed in the New Zealand Bill of Rights. The case has since made it to the High Court, but it feels to me largely like a disruptive, academic exercise. These are far from  the rights that my friends and I are worried about right now.

A friend had called me with a shrug of resignation in her voice. She said, “If our medical system goes the way Italy’s has, I just won’t be prioritized.” I didn’t try to comfort her. Perhaps she was being a realist. Kindness is not always enough to keep us alive.

Having to often depend on the kindness of others generally places disabled people outside the non-disabled world’s frame of reference for who and what is essential. Disabled people are essential workers, parents, or otherwise part of the unseen economy that will get us through.  The concept of ‘the bubble’ – the central analogy our Government uses to describe how people should limit or expand their social contact – was first proposed by a disabled academic, Dr Tristram Ingham.

Understanding the potential power of disabled people has not made me feel safe, though. Going into lockdown I had simultaneous feelings of vulnerability and responsibility. Navigating my responsibility to my support workers as an employer was not new. In the shifting legal landscape of the pandemic response, the limitations of the system left me alone at critical moments. I didn’t know if I would have a full support team over lockdown, or adequate protections for them if they did work. 

My flatmates helped me move through this uncertainty. From my team of three, two support workers continued coming into our home. They became my contact points for everything: making food, picking up extra shopping, visiting my room when a cold cut me off from the rest of the house, providing most of my physical touch, albeit through latex. 

How was your lockdown? is too quickly becoming a ubiquitous nicety, one that suggests that this crisis has passed. Outside Auckland – where case numbers are higher – we are experiencing reprieve, easily forgetting how fragile things are, while many  disabled people continue to fear the deadly repercussions of relaxing safety measures. I struggle keep my reply personal. The people around me understood my rights, and they were kind. I respond, Well, I was lucky. 

Links to articles and sites referenced, in order of appearance:

NZ Herald; ‘All I want to do right now is hide’: What it’s like living in deadly fear of coronavirus, by Kirsty Johnston. March 21, 2020. https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12318306

The Guardian; Welsh surgery apologises over ‘do not resuscitate’ instruction, by Mattha Busby. March 31, 2020.

https://www.theguardian.com/society/2020/mar/31/welsh-surgery-says-sorry-after-telling-the-very-ill-not-to-call-999

The New York Times; ‘It’s Hit Our Front Door’: Homes for the Disabled See a Surge of COVID-19, by Danny Hakim. April 17, 2020.

The Spinoff; Unlawful, but necessary and reasonable: making sense of the High Court ruling on the lockdown, by Andrew Geddis. August 20, 2020.

Stuff; Dr Tristram Ingham, the brains behind the COVID-19 ‘bubble’, by Josephine Franks. July 18, 2020.

About the author

Henrietta (Etta) Bollinger is a writer and disability rights advocate. Etta has had poems appear in Starling, Mimicry and Scum magazines and plays staged  in New Zealand, Australia and the UK. Etta lives with two other advocates and their sympathetic cat. Etta is currently writing a first book about life as a disabled person.

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By Danielle McCann

When I found out that I’d been exposed to COVID-19, I was worried, but once I started trying to get tested, I was floored by the responses I got back. Either I was endlessly on hold, only to have my call disconnected, or I was continuously directed to inaccessible websites to check appointment availability. I finally found that a national chain had drive-up locations in my area, so I thought I’d call to let them know that I’m blind and would be walking through for my appointment. This is where it all changed.

The first person I spoke to simply told me to go elsewhere because they didn’t serve blind people. I immediately went to social media and tagged the chain in posts expressing my shock at being dismissed like that. 

While my posts garnered a call from the regional manager, it proved fruitless. Every time he said that walking through a drive through was a safety concern, I countered with “sir, with all due respect, it’s up to me to decide what my health and safety priorities and concerns are.” He suggested a rideshare; I asked if it was fair to potentially expose a driver, and what about the cost of that trip? I could have covered the ride but not everyone can afford that expense. He mentioned that it was against their safety policy for the company to allow me to walk through a line of vehicles. I asked about changing the policy. He said that there would be a walk-up location available within the next few months, but I refused to wait that long – in a couple months of waiting, I could expose so many people, or face health complications from the virus going undiagnosed and unaddressed. He finally called me back three days later and said that he could “probably” make an exception for me; I declined because that wouldn’t fix the root issue, the systemic allowances that enabled the company to not accommodate my disability, and to think it was okay to do that. During our third conversation, he said that he understood my frustration. I simply said “No, you don’t. Because at the end of the day, you can drive up and get tested with ease while I, and everyone else who doesn’t have access to a vehicle, cannot.” He promised a future call back that has yet to happen.

While I am comfortable advocating for myself in all types of situations, this was something new. I’d dealt with barriers in school, with my guide dog, at work, and in other instances. However, up till now, I’d been fortunate in only having to gently explain my needs in a health care setting to have a positive outcome. The brushoffs coupled with the constantly changing rules of COVID-related interactions were uncharted territory; my successful navigation of which could literally could mean life or death for me and countless others.  

Self advocacy tips

I used these strategies to get what I needed.

1.     Stay calm. 

As emotional as you might feel, approach the situation calmly and with patience. It is so important to advocate with a level head so you can provide helpful information and lay out your concerns clearly. I was angry and frustrated, but yelling wouldn’t have gotten me anywhere, so I stayed calm and explained my situation as many times as were necessary.

2. It is ALWAYS the right time to advocate. 

I’ll say it again: It is ALWAYS the right time to advocate. Throughout my search for a testing site, I was brushed off more than once. It seemed like at every turn, the people I talked to were dismissive of my urgency to get tested because I needed accommodations. I made sure to explain why the process that works for most doesn’t work for us all. I hit dead ends a majority of the time, but I didn’t let them turn me away without trying to make them understand why accessibility matters.

3. Make a Plan B in case your first plan falls through or is indefinitely delayed.

While I was going back-and-forth with the chain pharmacy, I continued my research into other facilities. Thankfully, I was able to make an appointment which was several days out with a hospital so I knew that if I didn’t get anywhere with Plan A, I would have a backup solution. While booking this appointment, I noted that I would need a walk-up accommodation because I’m blind and asked that they call me if I needed to follow a different protocol than what was listed online.

4. Then make a Plan C, Plan D, Plan E… 

In addition to the appointment at the hospital (which is not within walking distance) I got a couple of offers from friends/family who felt comfortable enough to drive me through the line. I told them I’d let them know if I needed them but kept on searching for another way. Also, in the back of my mind, was the rideshare option.

5.     Speak honestly about your needs. 

If you need electronic versions of registration forms, a sighted guide, interpreter, or other accommodations, let them know and keep reminding them. In addition to making them aware of my needs while registering, I reminded them when they called to confirm my appointment. As we all know, in hectic times, miscommunications can happen.

In the end, I got my test using the best combination of resources that worked for me. Thankfully, it was negative, and though it wasn’t a smooth experience, it was a good reminder for me to keep educating others and using my voice to speak up for equal access. Life is not one-size-fits-all, and until there is space for everyone, we, as a proud disabled community, need to keep pushing for it no matter how long it takes. 

About the author:

Danielle McCann is a proud blind Latinx living in the suburbs of Milwaukee with her husband and their three dogs. When she’s not working as a customer service manager, she is crocheting, teaching crochet, creating content for her social media platforms that is crochet-related, or buying yarn for more crocheting. Follow her on Instagram at @DMadeCrochet or on her YouTube channel, DMade Crochet. 

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by Sabrina White

The Social Security Administration (SSA)’s severely flawed disability determination/reconsideration process is having an even deadlier impact on persons with disabilities than usual. Granted, it is fully understood that the target populations for Social Security benefits are people who are retiring from work, and Persons with Disabilities (PWDs) experiencing either the beginning effects of no income due to the initial onset of disabilities, and/or who have experienced disability in the long term.  Among the several internal misapplications of statutes at the Social Security Administration’s Disability Determination Service (DDS)’s level, one error alone can be the ultimate determinant of whether persons with disabilities live or die, especially when facing imminent peril to the likes of the COVID-19 pandemic. 

In spotlighting these issues within the agency, one should note that there are two types of Social Security benefits, with two separate sets of rules in the disability determination process:

1. Supplemental Security Income (SSI) for persons with disabilities who have little or no work history and no access to an income or resources; and 
2. Social Security Disability Insurance (SSDI) for people who have a longer history of working who have become disabled.

Both of these determination processes have proven to be highly inefficient and painful for persons with disabilities, as well as unduly compound additional deficiencies brought on by a pandemic.  Even prior to the pandemic, applicants faced financial and medical dangers while waiting upwards of six months to never-ending years for an initial favorable/unfavorable determination, followed by up to four other appeals stages, depending on the state in which the claimant resides. According to a new report from the U.S. Government Accountability Office, from 2008 to 2019, nearly 110,000 people died while waiting for an appeal. 

A crucial flaw in the agency’s determination process presumes that claimants are able to rely on their families and communities for financial and medical support during the painstakingly lengthy determination and appeals process. For most applicants, this is not the case, as persons with disabilities generally start out at a financial disadvantage during the initial application process. If an individual does have some income or financial means to sustain themselves through the application process, they are likely to get denied still. They may get denied for SSI because they exceed the asset limits, which essentially state that if a person has more than $2,000 in cash or resources, they are ineligible to receive SSI benefits. If an individual either chooses or is forced to work while they await their benefits determination, they may be denied on the basis of Substantial Gainful Activity (SGA). This refers to a cap on the monthly income that serves as the agency’s threshold of disability – if an individual makes more than the limit, they are not considered disabled by the Social Security Administration. The algorithm makes no compensation for claimants whom had a higher earning power prior to becoming disabled who had to stop working due to their disabilities during the required 12-month period. Because of the higher perceived earning power, these applicants are often denied, even though the claimant was not able to fully meet their needs. 

Despite these algorithms, the agency then contradicts itself with special exceptions – the opportunity to have uncapped income can become available under their work incentives programs. One additional social construct of claimants is those that fall in the ‘gray’ area of ability to provide for a single-parent family household’s circumstance. The agency fails to take into account the actual impact of any court-ordered required Accounts Payable which fall under “outgoing income” – for example, child-support (cash support and/or medical), where the claimant doesn’t get to ‘enjoy’ nor use this portion of their income to their advantage. In each of these cases, a clear pattern emerges in which the administration focuses on heavily weighing resources, moreso than on helping the claimant. Even knowing that these criteria are circular and unrealistic, the agency’s internal representatives apply these systemically-oppressive criteria to a fault, as a part of their everyday job duties. This system is designed to the disadvantage and often, detriment of a disabled person. With the lengthy determination/appeals processes, disabled people often feel stuck in state of purgatory. 

The majority of persons with disabilities are people of color, and due to racism, including redlining, hiring and pay discrimination, and denied access to wealth-building, the African-American population holds the highest poverty and subsequently, homelessness rates in every state across the United States. Due to these factors and others, African-Americans are being disproportionately impacted by the COVID-19 pandemic – hence the death tolls previously mentioned from the U.S. Government Accountability Office’s report.  Rothstein’s “Segregated by Design” 17-minute video compilation shows in great detail how de jure segregation has maintained systemic and institutionalized oppression that could explain why persons with disabilities are deficient of assets and resources to sustain themselves and their families. Exploring eight key environmental injustices in unison provides unique clarity on how each of the individual environmental injustices are connected via domino-effect to the other(s) as follows:

1. Landlessness                                 5) Hunger-in-America
2. Poverty                                          6) Health Disparities
3. Homelessness                               7) Educational Disparities
4. Wealth/Income Inequalities          8) Mass Incarceration of African-American Men

One additional note for persons with disabilities during COVID-19 is that on state-level assistance and optional eviction moratoriums, it is technically per states’ ‘right-to-choose’ regarding enforcement of nationally declared moratoriums. Large numbers of persons with disabilities are more likely to face eviction, compounded episodic homelessness, compounded poverty, and/or raw poverty circumstances, all of which can be linked to the cycle-of-poverty identified in the landlessness phenomenon first proposed in Esman’s (1978) compiled report presented at Cornell University to the Rural Development Committee, where he framed the ‘landless’ and ‘near-landless’ terminology.  Landlessness was later revisited by Sinha’s (1985) compiled text stemming from Sen’s (1983) premise that landlessnesswas both a cause and symptom of chronic poverty, which espoused the situations and tribulations the landless are going through in connection to deficiencies in assets and resources. The Social Security Administration’s process requires disabled people to stay in the cycle-of-poverty, whether or not they receive assistance. As we collectively face the ongoing impacts of the pandemic, persons with disabilities will face increased landlessness and cycles of poverty, all while awaiting benefits that due to this flawed determinant system, may never come. 

It is clear that the cycle of poverty and by extension, the benefits determination process that holds persons with disabilities in the cycle of poverty, is not only painful, but it violates the constitutional right to life of persons with disabilities. As Rothstein posits in the “Segregated by Design” video, “And if it’s unconstitutional, then we have an obligation to remedy it!”

Documents referenced:

Esman, M.J. (1978). Landlessness and near-landless in developing countries, p. ii. Rural Development Committee. Cornell University.

Neuman, Lawrence W. (2011). Social Research Methods: Qualitative and Quantitative Approaches 7th Edition. Allyn & Bacon.

Picchi, Aimee. (2020). Almost 110,000 Americans died while waiting for a Social Security disability hearing. CBS News.

Rothstein, Richard. (2018). The Color of Law A Forgotten History of How Our Government Segregated America. Liveright. 

Rothstein, Richard. (2018). Segregated by Design.  Retrieved from https://www.segregatedbydesign.com/.

Sen, Amartya. (1983). Poverty and famines: an essay on entitlement and deprivation. Oxford University Press, USA. 

Sinha, Radha. (1985). Landlessness: A Growing Problem. FAO Economic & Social Development Series. No 28/F2720.

White, Sabrina. (2018). Dire Systemic Inequitable Domino-Effects of Landlessness: Mississippi the Worst-Case Scenario.  Dissertation.

About the author

Sabrinah White, PhD is an Urban & Regional Planner/Environmental Social Scientist and speaker committed to reform efforts on environmental injustices and activism for our society’s much needed expeditious change under the looming disadvantageous impacts of global warming/climate change for marginalized, disenfranchised, and disadvantaged groups.  She is also a Person with Disabilities (PWD) who has challenged and championed Social Security Administration’s faulty disability policies, misapplication of statutes, and in-house minutiae at all levels of the appeals processes including federal Judicial Review for over 6+ years, and won as a Pro Se claimant.  Amongst her efforts in public service, she has also served as an AmeriCorps VISTA (Volunteer-in-Service-to-America).

Social Media Profiles & Blogs:

Facebook: https://www.facebook.com/LANDLESSNESS/

YouTube: LANDLESSNESSReform

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By Kale Sastre

When I first heard about Coronavirus, it didn’t seem much different than other health scares I’ve lived through. I thought this would be a good chance to get some cheap plane tickets, though I was disappointed that St. Patrick’s Day events were cancelled. But once schools and sports shut down, I knew it was serious. Since then, people I know personally have gotten sick and even died. The in-person supports I depended on have been pulled out from under me. While this has been hard on everyone, it is particularly difficult on people with mental health conditions, including myself and my neighbors.

I live in an apartment complex for low income people with at least one diagnosed mental health disorder. The organization that runs this complex is a mental health community center . Organizations like this community center and housing programs that cater to low income, disabled individuals are absolutely crucial to us surviving – not only during a pandemic, but all the time.

For most people, the uncertainty we’re dealing with now is scary. For people with anxiety, it is terrifying, impacting what we can handle on a daily basis. Most people would agree that these times are depressing, but for those of us with depression it can feel overwhelming and unbearable. Our suicidal thoughts are skyrocketing while the world seems hopeless and our lives have lost many of their bright spots. While everyone is struggling to maintain a sense of normalcy, many people with mental health disorders are struggling to survive.

People with cognitive and intellectual disorders may not understand what is happening and why, especially without consistent, direct instructions and communication. People with social disorders are more isolated than ever, which can make it difficult to continue hard-won progress in maintaining healthy social relationships. People who struggle with instability in their mental health, including people with bipolar or borderline, report having a hard time gripping onto something to keep their lives safe and regular. Consistency is key for managing many of these disabilities, and we are in a time with very little consistency.

For many of my neighbors, the hardest thing about Coronavirus has been the closing of the community center. Since all of us in my complex live alone and many do not have jobs, the center has been a major source of socialization and productivity for residents, as well as for other community members. Going to the community center was a big part of many people’s routines. Routine can be calming and motivating, and helps keep people on a stable and healthy path. When our routines are disrupted, it is harder to have a positive attitude and to do the things necessary for our wellbeing. For some people with mental health disabilities, lack of routine can lead to a total breakdown. Coronavirus has left us without much of a routine.

The community center offers a virtual experience to members now that the building is closed, and the staff have been reaching out to members. Supporting organizations like the center makes a tremendous difference for people struggling with their mental health, especially right now.

Without supportive housing options such as is offered through this program, many people with mental health disabilities experience severe consequences, including homelessness. According to the Center for American Progress:

“People with mental health disabilities are vastly overrepresented in the population of people who experience homelessness. Of the more than 550,000 people in America who experienced homelessness on a given night in 2017, 1 in 5 had a mental illness. The proportion of people experiencing chronic homelessness with mental health disabilities was even higher—nearly 1 in 3.”

The chronic stressors around insecure housing have a strong impact on mental and physical health. Permanent supportive housing, a combination of safe, stable housing and supportive services for people with mental health and other disabilities, is widely recognized as an evidence-supported model for providing transformative support that leads to improved health and lasting housing stability. In a pandemic where people with disabilities are at higher risk of infection, this is an especially important accommodation.

For me, part of how I keep my mental health in a good place is by traveling and setting goals. Right now, most travel is indefinitely suspended, and many of the goals I have set for myself have had to be put on hold. I made a new list of goals specifically for the duration of the pandemic, but much of what I really want to do is postponed if not completely cancelled. Suicide risk goes up when distractions are gone and goals seem unachievable. Depressive states can seem never ending.

It is important to remember people with mental health struggles during these times, without using mental health struggles as an excuse to let virus transmission run rampant. More than ever, we need people to reach out to us. My friends who have played games with me online and who have offered to video chat with me help me to feel less purposeless and alone. I’ve been able to help my neighbors by walking them through how to connect online and by helping organize mini events on the property.

Check on us. Don’t just ask if we’re okay; ask how you can help. Help us individually but also support mental health organizations and mental healthcare access. Keep up with your legislators and show your support for disability rights, as well as initiatives that provide funding for long-term supports and services for people with disabilities, including permanent supportive housing. Funding for mental health organizations is especially crucial right now, as is affordable access to virtual mental health appointments. These resources can help people with mental health disabilities build and keep their stability and comfort, and even save their lives.

Links to articles and sites referenced, in order of appearance:

Center for American Progress; Lack of Housing and Mental Health Disabilities Exacerbate One Another, by Heidi Schultheis. November 20, 2018.

American Public Health Association (APHA); Housing and Homelessness as a Public Health Issue. November 7, 2018.

About the author

Kale Sastre is a disabled writer/activist/adventurer living (for the moment) in Chattanooga, Tennessee. She wants to bring awareness to the issues people with physical and mental health disabilities and chronic illnesses face through her own experiences as well as those of others.

Kale’s websites: ksastre.wordpress.com and themighty.com/u/kale-sastre
Twitter: @KaleSastre
YouTube: DZ Disaster

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By Arundhati Nath

India is the second-most populous country in the world with more than 1.3 billion people. According to the latest census conducted by the Government of India in 2011, only 26.8 million people with disabilities live in India. This is a mere 2.23% of the total population of the country, which is a hugely underestimated number. The World Report on Disabilities published by the World Health Organization mentions that around 15% of the world’s population lives with some form of disability.  

“At present, the Rights of Persons with Disabilities Act (RPWD), 2016 recognizes 21 categories of disabilities, which include blood disorders, acid attack victims and several other disabilities. If we count everybody in, even a very modest estimate of disabled Indians would be 10% of the total population, if not more,” says Arman Ali, renowned Indian disability rights activist and Executive Director of National Council for Promotion of Employment for Disabled People (NCPEDP).

The majority of India’s disabled population is facing huge adversity owing to the Covid-19 pandemic. Disability is often still seen as a curse in India and the needs of people with disabilities do not receive the mainstream attention that they rightly deserve. 

Locked Down and Left Behind is a recent report published by NCPEDP, summarizing the first hand, real-life experiences of disabled Indians during the pandemic. It has found that a staggering 73% of disabled Indians are facing severe hardship during the pandemic and the subsequent lockdown. 

“The basic requirements like procurement of food, medicines, and the ability to go from one place to another or get help have become very difficult for [disabled people]. People have lost jobs and livelihood options leading to a huge financial crunch,” Arman says. 

Many people with disabilities have more than one disability, including conditions like diabetes or hypertension. People with these disabilities have been impacted by the interruption in medical support services, like the collection of blood samples from home, which has been stopped due to the lockdown. There is a huge drop in the supply of blood in blood banks, affecting blood transfusions for thalassemia patients.

People with disabilities who regularly need catheters, caregiver support, cotton wool, urine bags, bandages, medicines, assistive devices, and medical care were badly affected. Lack of funds and the inability to physically travel to get these items due to the lockdown have made life very difficult and even dangerous for disabled Indians. 

As most disabled Indians work in the unorganized sector, their sources of income have completely ceased to exist during the lockdown. Some are the only breadwinners for their families, and often support elderly parents or other disabled siblings or spouses. 

A disabled Indian who was a respondent to the survey conducted by NCPEDP, said, “I’m a person with a disability and my income is Rs 750.00 (10.01 US$) per month. Though this is a small amount, I was able to earn more through commissions. But now that my office is closed, I have no source of income.”

Disabled people are always more impacted by discrimination, violence, abandonment, and abuse as they are often denied the tools, accommodations, and trust they would need to defend themselves, which leads to psychological stress and mental health problems. This is showing up in fear and violence in relation to the coronavirus as well. For instance, a family in the city of Raipur deserted a deaf-mute person by admitting him to a hospital for coronavirus symptons, furnishing a false residential address and contact number. In the eastern Indian city of Kolkata, a man killed his 48-year-old disabled son during a heated argument over the son’s refusal to wear a face mask. 

According to the report published by the NCPEDP, although some states of the country like Nagaland, Kerala, Tamil Nadu, New Delhi, Himachal Pradesh, Maharashtra, Goa, Assam, Jammu and Kashmir and Karnataka have taken some steps to help the disabled population in a few ways, there’s a lot more that needs to be done. 

“I think people with disabilities are the worst affected during the pandemic and the fact that there’s no focus on collecting information during any such disaster, makes the situation more difficult. We have no clue how many people with disabilities are tested COVID-19 positive, are in quarantine, or have died. There’s not even a dedicated and accessible national helpline for the disabled during this pandemic. In a situation where [people with disabilities] should have been treated as a priority, they’ve been forgotten, which is unfortunate” Arman says.

Links to articles and sites referenced, in order of appearance:

United States Census Bureau; U.S. Census Bureau Current Population.

Office of the Registrar General & Census Commissioner, India; Measurement of Disability through Census. 2011.

Hindustan Times; India’s disabled must have a fighting chance to achieve whatever they want. June 5, 2017.

World Health Organization; World Report on Disabilities. 2011.

The Government of India; The Rights of Persons with Disabilities Act, 2016.

National Centre for Promotion of Employment for Disabled People (NCPEDP) website.

National Centre for Promotion of Employment for Disabled People (NCPEDP); Locked Down and Left Behind. 2020.

The Print; Study finds 73% persons with disabilities facing severe difficulties during lockdown in India, by Revathi Krishnan. May 22, 2020.

Times of India; Family deserts deaf-mute as ‘corona patient’, by Cherrupreet Kaur. April 2, 2020.

Hindustan Times; Man kills 48-yr-old physically challenged son after he refuses to wear face mask. April 19, 2020.

About the Author:

Arundhati Nath is a full-time, visually impaired freelance journalist and children’s author from Guwahati in Northeast India. She writes about disability and human rights, development, women’s issues, healthcare, culture, the environment, wildlife and conservation. She has been published in The Guardian, CSMonitor, Aljazeera English, BBC Wildlife, South China Morning Post, Reader’s Digest and several others. 

Arundhati can be reached at natharundhati@gmail.com and her work can be viewed online at her website, www.arundhatinath.com.

Arundhati’s LinkedIn page

Arundhati’s Twitter profile

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by Emma Alpern

For many stutterers, support groups are a source of community and empowerment outside of the world of corrective speech therapy. In meeting with other people who stutter — often for the first time — members experience conversation without fear of judgment from fluent speakers. During the COVID-19 pandemic, though, the alchemy of the support group has been disrupted. These in-person groups have been replaced with virtual gatherings, but the medium is not always comfortable for people who stutter, who often struggle to articulate themselves through technologies like Zoom and who are accustomed to in-person community building.

In 1977, a small cohort of people who stutter in San Francisco came together to found the National Stuttering Project (now the National Stuttering Association). The idea was simple: To create a space for stutterers to speak to each other in the spirit of mutual aid and self-help. The organization published a newsletter and other materials, its founders responded to letters and phone calls from stutterers, and its members protested ableist representations of stuttering in the media, but its central offerings were in-person conferences, workshops, and support groups.

These stuttering spaces hit a chord. Now, the organization has over 100 local chapters; other organizations, like FRIENDS, SAY (the Stuttering Association of the Young), and NYC Stutters, also host conferences and groups by and for people who stutter.

I am one of three chapter leaders for the Brooklyn chapter of the National Stuttering Association, a thriving group that has met in a room at the YWCA for the past decade or so. It’s not a perfect room — the air conditioner is loud, and the door is glass, offering little privacy — but it’s central, wheelchair accessible, and, for an hour and a half every month, ours.

Before the meetings start, people trickle in slowly, sometimes observing the room from the sidelines and sometimes striking up conversations with the person next to them. Afterwards, we usually head to a local bar for a drink. Bookending the intense discussions in our groups, which grapple with questions about family dynamics, the sometimes damaging effects of speech therapy, and employment (people who stutter earn about $7,000 less per year than people who do not stutter), these moments are when we experience the bliss of stuttered conversation with people who sound like us, a rare thing in a mostly fluent world. In April, we had our first meeting over Zoom, pausing our in-person meetings due to the coronavirus. These side conversations and opportunities for intimate or even casual moments of bonding have become largely unavailable in our video chat era.

Phones are another common topic in our meetings. Practically all stutterers despise speaking on the phone: the poor sound quality makes our stuttered speech less audible, and phone conversations don’t allow for the non-verbal cues that many of us rely on. Maybe this is part of why our attendance during the pandemic has declined. Zoom, as one of my co-leaders put it, turns the laptop into “a stutter box … I sit in front of this box in my room alone, stuttering.” Many of the qualities of in-person speaking that we enlist to help us through, like gestures and quieter sounds, fall out of the bounds of video chat technology. Meanwhile, as we stutter on camera, we are forced to confront our face as we stutter — an uncomfortable proposition for many of us.

And the technology itself is not reliably available to all of our members, who may not have an internet connection or computer literacy. Although I appreciate the increased access that virtual meetings offer to people who cannot make their way to Downtown Brooklyn, a number of our members have struggled to join our virtual meetings.

Like the original National Stuttering Project, the stuttering community works to offer not only in-person support groups, but also online forums, advocacy, and publications. But in rooms like the one at the YWCA, we’ve nurtured a speaking environment that’s comfortable for people who find hostility and barriers in other conversations. In many ways, it’s the heart of what we do. Until these spaces return, we’ll have to make do with the stutter box.

Links to articles and sites referenced, in order of appearance:

Journal of Speech, Language, and Hearing Research; Stuttering and Labor Market Outcomes in the United States, by Hope Gerlach, Evan Totty, Anu Subramanian, and Patricia Zebrowski. July 13, 2018.

The Washington Post; For people with disabilities, doctors are not always healers, by Leana S. Wen. October 27, 2014.

The New York Times; Stutterer Speaks up in Class; His Professor Says Keep Quiet, by Richard Pérez-Peña. October 10, 2011.

Narratively; When You Talk Over My Stutter, You Steal My Voice, by Spring Kwok. February 19, 2018.

About the Author

Emma Alpern is a copy editor and writer living in Brooklyn, New York. She has been a part of the stuttering community for about seven years, primarily through NYC Stutters and the National Stuttering Association. She’s written about stuttering for The Atlantic, Eater, and Vice, and has a chapter in the 2019 book Stammering Pride and Prejudice.

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by Shelley Lynn Tremain

In Canada, no aspect of the COVID-19 state of emergency has demonstrated the egregious effects for seniors and younger disabled people of neoliberal austerity measures and government indifference to the lives of elders and disabled people more than the entirely predictable tragedy unfolding in nursing homes and long-term care facilities in the provinces of Ontario and Quebec, beginning in early March of 2020.

In May, as case numbers continued to grow, the provincial government of Ontario issued a call to the Canadian Armed Forces to assist with the dire situation in nursing homes and long-term care facilities throughout Ontario, following the lead of the government of Quebec, which had already done so a month earlier. By that time, the situation in these Ontario facilities had spun out of control, with a rising number of COVID-19 cases amongst both their senior and younger disabled residents and staff.

By June, close to 2,000 deaths had occurred in nursing homes and other long-term care institutions in Ontario, while more than 80%—that is, more than 6,000—of the total number of COVID-19 deaths in Canada by that time had occurred in such institutions, with nursing homes in the province of Quebec the hardest hit. By late April, more than 1000 of the 1350 COVID-19 deaths that occurred in Quebec were related to long-term care facilities. After months of escalating numbers, the Quebec coroner’s office called for a public inquiry into the COVID-19 deaths in these institutions.

Even U.S.-based newscast CNN, in a July report that focused primarily on the effective response to COVID-19 of the current federal government of Canada, drew attention to the large number of deaths that have taken place in nursing homes and other long-term care facilities across Canada, informing the American public and indeed the global community of the horrific conditions within these institutions  that COVID-19 has exposed.

The vast majority of COVID-19 deaths in Canada have occurred in for-profit facilities, leading to  widespread demands for the Canadian government to “take control of long-term care.” These demands have steadily increased since the release of a whistleblower report about six Ontario nursing homes—five of which are for-profit homes—filed by medical personnel of the Canadian military deployed in these facilities. Among the violations that these medical personnel cited were the following: cockroaches and rodents in some facilities; lack of personal protective equipment, lack of hygiene, and under-staffing in virtually all of them; inadequate cleaning and sanitizing of resident rooms; slow response to resident calls for assistance; dirty linen or no linen on resident beds in one of the facilities; and inadequate staff training with respect to infection control in many.

Should publicly funded nursing homes and other long-term care facilities be advanced as the solution to the decades-old crisis in these institutions, in Canada and elsewhere?

A recent segment on CBC’s The National compared the nursing-home system in Australia with the nursing-home system in Canada. While more than 6,000 people have died from COVID-19 in long-term care in Canada, only 29 people have died from COVID-19 in nursing homes in Australia. Australian nursing homes, both for-profit and government-operated, are subject to considerable government regulation and inspection. In short, living conditions are reportedly better in nursing homes in Oz, whether publicly or privately owned and operated.

Yet, even adequately staffed nursing homes that are well kept cannot be the proper response to the question of how societies should provide long term supports and services to seniors, elders, and younger disabled people. On the contrary, the nursing home-industrial-complex must be recognized as an institutionalized mechanism that contributes to the reproduction of ableism and ageism. Indeed, we should regard up-scaled regulation and renovation of nursing homes as a kind of gentrification of these apparatuses of power, gentrification designed to ease the minds of the community-at-large about the fact that it has removed sectors of the population from their homes and communities. In other words, we know that gentrification in all its forms, but acutely in the case of the nursing home, effectively leaves intact the apparatuses and the systemic injustices that continue to harm the people that these superficial changes are claimed to help. The removal of seniors and younger disabled people from their communities and society at large—that is, their segregation in nursing homes and other “long-term care” facilities—takes away from them the prospect of lives that they deserve to live.

The COVID-19 pandemic has shone a spotlight on the fatal consequences of these systemic injustices and many others. We must ensure that these deadly consequences spur on larger and more critical cultural discussions about the institutionalization of various constituencies, discussions that in turn must motivate significant social and political changes of the practices and policies that govern the lives of the disabled people, seniors, prisoners, immigrants, Black people, and other people who comprise these constituencies taken away from the community in the name of care and safety.

Links to articles and sites referenced, in order of appearance:

The Star, 82% of Canada’s COVID-19 deaths have been in long-term care, by Tonda MacCharles. May 7, 2020.

The Globe, How Quebec’s long-term care homes became hotbeds for the COVID-19 pandemic, by Tu Thanh Ha. May 7, 2020.

CBC News, Quebec coroner’s office orders public inquiry into COVID-19 deaths in long-term care homes. July 17, 2020.

Twitter thread in reference to a segment on CNN Live News, posted by Ian Hanomansing, @IanHanomansing. July 3, 2020.

CBC News, COVID-19: Majority of region’s long-term care deaths occurred in for-profit homes, by Julie Ireton. June 10, 2020.

CBC News, Military report reveals what sector has long known: Ontario’s nursing homes are in trouble, by Adam Carter. May 27, 2020.

CBC News, The National: Australia’s COVID-19 successes shine a light on Canada’s troubled long-term care sector, by Terence McKenna. June 13, 2020.

About the Author:

Shelley Lynn Tremain has a Ph.D. in Philosophy from York University in Toronto and was the 1997-98 Ed Roberts Postdoctoral Fellow at the World Institute on Disability and University of California at Berkeley. Shelley was the recipient of the 2016 recipient of the Tanis Doe Award for Canadian Disability Study and Culture and the 2017 recipient of the Tobin Siebers Prize for Disability Studies in the Humanities. She coordinates BIOPOLITICAL PHILOSOPHY, a philosophy blog that focuses especially on the underrepresentation of disabled philosophers in academic philosophy.

Link to BIOPOLITICAL PHILOSOPHY blog website

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