Where we are now: disability in the pandemic
I hope you're as well as can be in these times. Welcome to an update on the Coronavirus pandemic and how it affects persons with disabilities around the world.
The world has changed very quickly in the past few weeks. This newsletter gathers together over 500 links, all of which are from the past month.
See previous updates on coronavirus: an Overview (March 26) and the first update (18 March).
For those of you who don't know me, I'm a freelance consultant working on disability and development for almost ten years now. This newsletter is my voluntary contribution.
Please stay in touch with news to include: on twitter @desibility.
We need to be careful about information at this time, and that includes the links below. See useful advice on fact-checking news related to Coronavirus (Full Fact, March 26).
- Key resources
- News that isn't coronavirus
- Collections of resources
- Catching-up (webinars and other events)
- Overall approach (internationally / by country / situation in residential facilities / concerns disabled people will be left behind)
- Protection (information / isolation and physical distancing / humanitarian)
- Treatment (includes limited medical resources)
- Interim measures (lockdown measures, social protection and more in several sectors)
- Rebuild and recovery
- Consultations and petitions
- Upcoming webinars
The updates below show the danger persons with disabilities are in, and the extent of response to limit it. Persons with disabilities are dying because of stigma or oversight, and there are considerable risks this will continue. There is a robust response from the disability community and our allies around the world.
As well as the health, economic and social risks the pandemic and its consequences, there is an unprecedented attempt to look after each other. The disability community is part of this at every level, from international discussion to day-to-day supports. Our concerns are being showcased in mainstream media, and I am so grateful for all the alliances our community has formed over the years, so many of which are being activated.
The tasks for our response are urgent and formidable. Persons with disabilities are dying or facing great hardship because of COVID-19 and the social and economic results of the pandemic. There is particular danger for people in institutions or residential facilities where already the number of casualties is devastating and not enough prevention measures have been taken to limit it in the future.
The battle lines have been set. There is a day-to-day struggle to make sure persons with disabilities are protected in health and financial terms, as well as continuing to access services they need in a safe way. Transformations of the role of government and our socio-economic relationships are happening extremely quickly and many have not anticipated existing disability concerns or the new ones that come out of the pandemic. There are active disputes over whether medical professionals have been or will be instructed to discriminate against older persons and persons with disabilities.
Going forward means continuing to push along the same lines. The response is robust on the most important issues and will need to continue. Some important areas have shown intersectional approaches but there is still too little engagement in our shared concerns with older persons and other groups. Mainstreaming of disability concerns depends on our ability to articulate a shared relevance for many groups. As many countries will be easing some of the strictest lockdown measures, there needs to be much more discussion of the disability-related concerns that need to be integrated in easing lockdowns.
Profound changes will come to our societies and economies in the ways we rebuild from the pandemic. Change will come to our ways of living, getting around and working; to governments and how they interact with citizens. On one hand there is a danger that these quick transformations leave behind persons with disabilities and all we've gained on disability rights over the years. On the other hand we have a perhaps once-in-a-generation chance to make inclusion of persons with disabilities a central part of the new world.
Coming soon: The UN Secretary General will be shortly releasing a policy brief on a disability-inclusive response.
The World Health Organisation (WHO) has shared Disability Considerations during the COVID-19 Outbreak (March 30). These are a vital contribution.
- They include reasons additional considerations are needed for people with disability during the COVID-19 outbreak.
- Actions are detailed for: people with disability and their household, governments, health-care workers, disability service providers in the community, institutional settings and the community.
The International Disability Alliance (IDA) has detailed recommendations and a collection of resources on Covid-19 and the disability movement. It includes a section on voices of persons with disabilities during the pandemic.
The European Disability Forum (EDF) has vital contributions listed on their resource page. They include details of their members’ responses and frequently-asked questions.
The impacts of COVID-19 on people with disabilities: a rapid review (April 6) is a summary of the current international evidence produced by DFID’s Disability Inclusion Helpdesk.
- As well as highlighting the primary and secondary impacts on disabled people around the world, it has a useful discussion on what has limited inclusion of persons with disabilities in responses to previous epidemics. Its recommendations are relevant for a development partner perspective.
- See posts that introduce the report, summarise why disabled people are disproportionately impacted, and recommendations for a disability-inclusive response.
News that isn't coronavirus
I'm thrilled to be able so share the International Labour Organisation's (ILO) Key issues on promoting employment of persons with disabilities. A virus-free document.
A few years ago - 2015, actually - I was working for the ILO disability team and we had the bright idea to just try to write down simply the practical advice we give to colleagues and partners. I was feeling the gap between generic advice and what colleagues need to know in practice. I thought it would be simple, but it's many years and a lot of help from people that it came out. Happy to share a document with 50 of the most frequently asked questions about disability and the world of work.
There's plenty more non-Coronavirus work I haven't forgotten about but also haven't had a chance to share yet. Hopefully soon.
Collections of Resources
In addition to the key resources mentioned above.
If you are not already subscribed to this newsletter, then subscribe to get further updates, and see back issues online.
International disability and COVID-19 resources
The UN Resources on Persons with disabilities and COVID-19 from UN DESA.
The UN Partnership on the Rights of Persons with Disabilities (UNPRPD) has a list of resources on disability inclusion and COVID-19.
The International Disability and Development Consortium (IDDC) has a repository of resources on disability inclusion and Covid-19.
Source, an online resource centre on disability inclusion, has resources on coronavirus and disability.
A collection of Practical Tools on a disability inclusive COVID-19 response from Dutch Coalition on Disability and Development.
US International Council on Disabilities has a page of resources for the US and internationally.
Inclusion International has list of its member organizations’ resources and actions around the world supporting persons with intellectual disabilities and their families.
Inclusion of Europe has resources and information including easy-to-read documents in a range of languages.
Resources by topic
Impacts on the lives of disabled people:
- Disability and COVID-19: the global impacts - a blog series from iHuman institute at Sheffield University
- The International Long-Term Care Policy Network has regular updates from community and institutional long-term care responses to COVID-19 around the world.
- Corona Older is a hub with webinar an a wide range of content on older persons.
- HelpAge International has series of posts on older persons and COVID-19.
- The Mental Health Innovation Network has COVID-19 resources on mental health.
Deprivation of liberty:
- The Association for Prevention of Torture has an information hub on COVID-19 and persons deprived of liberty around the world. Under the “persons in situation of vulnerability” tab you can find the items that relate specifically to persons with disabilities.
- ILO Social Protection site has resources on disability-inclusive social protection response to COVID-19.
- The International Spinal Cord Society with resources for persons with SCI from around the world.
- Collection of disability justice resources including critical political analysis.
A glimpse at collections not directly related to disability:
- Coronavirus Government Response Tracker on overall policies (University of Oxford).
- Country policy responses in the world of work (ILO)
- Knowledge for Development daily Health Evidence Summaries, tracking international response.
- Social Protection Responses to COVID-19: includes webinars, newsletters and more (SocialProtection.org).
- Inter-Agency Standing Committee (IASC) COVID-19 Outbreak Readiness and Response
IDA has been hosting a series of events on facebook. (International sign, captions available in original although I can't see how to access them on replay)
- Disability and Coronavirus: Discrimination in Urgent Care (April 6).
- Key quotes from virtual event on on COVID-19 and the Rights of Women with Disabilities.
- Disability and Coronavirus: Weekly Briefing (April 13).
- Disability and Coronavirus: Weekly Briefing (April 20).
An international survey of persons with disabilities in March 2020 shared its results. Conducted by ONG Inclusiva with the Thematic Group on Disaster Risk Reduction. Gathering over 2000 responses from around the world, it shows quantitative results on the situation of persons with disabilities, with qualitative discussion of how that issue applies more widely.
Al Jazeera English stream on how is the coronavirus impacting people with disabilities? (April 20).
An international twitter conversation #disabilityc19 has been summarised in blog-posts: #DisabilityC19 Twitter chat (Sightsavers, April); risks and vulnerability related to disability and COVID-19, the structural violence and ablism, and the road ahead to support disability inclusion in the COVID-19 response. (Arise, April)
Cities for All with World Enabled are doing an 8-week webinar series #Cities4All.
- Why Cities Matter? Challenges and opportunities of Covid-19 Pandemic (March 25)
- Urban Access and Non-Discrimination in times of Pandemic (April 1)
- Resilience and Recovery Planning: Scaling Inclusive Urban Policies and Programs (April 8)
- Valuing Lives: Combating Myths and Threats to Older Persons and Persons with Disabilities in Local Level Responses - Asia Focus (April 16)
From Corona Older: Older people, comorbidities and COVID-19 in low and middle-income countries (April 24)
See World Blind Union's webinars on facebook.
In Europe, webinars from the European Association of Service Providers for Persons with Disabilities (captions not available but youtube autogenerates some)
- Adapting services for persons with disabilities during the pandemic. (April 2)
- The role of funding for support service providers in addressing the COVID-19 pandemic (April 9)
The Iberoamerican network of inclusive businesses held a webinar on the employment of persons with disabilities in the economic crisis of COVID-19. (In Spanish, April 14)
Inclusion Europe has held a series of online meetings, covering the European Disability movement, the impact on people with intellectual disabilities in Italy, easy-to-read advice and more.
In Pakistan and regionally, the National Forum of Women with disabilities has been supporting a series of facebook live events. (Facebook videos)
- Discussion on Women with Disabilities in Asia Pacific (in English, April 7)
- An Exclusive talk, (in Urdu, April 2)
- Disability and Fitness (in Urdu, April 17)
Also from Pakistan, Digital Baithak: COVID-19 & Persons with Disabilities, from NOWPWD and KDSP (in Urdu with sign-language, Facebook Live, March 30).
In the UK, Business Disability Forum held webinars on Covid-19 and Your Disabled Employees (March 31) and Working from home - tech solutions for disabled people (April 4).
There was good news internationally, in that IDA wrote an open letter to WHO and the director of WHO responded. The WHO Disability Considerations were mentioned above in Key Resources.
Joint statement from UN Special Rapporteurs that human rights are a part of the response (OHCHR, March 26):
“Everyone, without exception, has the right to life-saving interventions and this responsibility lies with the government. The scarcity of resources or the use of public or private insurance schemes should never be a justification to discriminate against certain groups of patients,” the experts said. “Everybody has the right to health.
Joint statement on Persons with Disabilities and COVID-19 on behalf of the Committee on the Rights of Persons with Disabilities and the Special Envoy of the United Nations Secretary-General on Disability and Accessibility. Ten points calling on governments and all relevant authorities.
Appeal from UN Expert on enjoyment of all human rights by older persons for better protection of older persons (OHCHR, March 27):
"Reports of abandoned older persons in care homes or of dead corpses found in nursing homes are alarming. This is unacceptable," said Rosa Kornfeld-Matte, UN Independent Expert on the enjoyment of all human rights by older persons. "We all have the obligation to exercise solidarity and protect older persons from such harm."
The UN’s OHCHR has rights-based guidance on COVID-19, including a sub-section on persons with disabilities.
The Organisation of American States has a practical guide for inclusive responses in the Americas with a focus on rights. It takes an intersectional approach and includes a chapter on persons with disabilities. (in Spanish)
Statement from the EU Commissioner for Human Rights on not leaving persons with disabilities behind in the COVID-19 Pandemic. (April 2)
Call from the International Disability and Development Consortium for an inclusive EU development cooperation response to the COVID-19 Pandemic. (April 7)
Position from Age Platform Europe on COVID-19 and human rights concerns for older persons. (April 1). Includes good practices.
Advice from Human Rights Watch on:
- how governments should respond to protect the rights of persons with disabilities during the pandemic (March 26). Easy Read Version.
- Rights-risks to Older People in COVID-19 Response (April 7)
- COVID-19: A Human Rights Checklist (April 14).
COVID-19: Considerations for Children and Adults with Disabilities from UNICEF.
Statement on Rights at the Intersection of Gender and Disability during COVID-19. Six key points with details, statement coordinated by Women Enabled International and others.
Call to action from the World Blind Union on inclusive response.
Useful summary on disability, coronavirus and international human rights (Oliver Lewis, April 11).
CBM has tools that support organizations to respond:
- a matrix for Disability Inclusive Community Action on COVID-19. (March 30) Building on Community-Based Inclusive Development Approaches, its five areas are compassion, communication, networks, participation and access. A guidance note accompanies (April 9).
- A guide on key advocacy messages and questions to ask on inclusion.
Question and answers with LFTW CEO on their response to COVID-19.
Overall response by country
- The government's Management and Operational Plan for People with Disability in the health sector emergency response. (April)
- a ten-point call from disability organizations (ProBono News, April 7)
- disability considerations from the Directorate General of Health Services (in Bangla, March 31)
- Directives to include persons with disabilities in disaster relief. (Translation on facebook, April 9)
In Canada, the government launched an advisory group to support persons with disabilities during the pandemic. (Global Accessibility News, April 14)
In Costa Rica, a discussion on what the government should do, with the Special Rapporteur on the Rights of Persons with Disabilities on. (In Spanish, with sign-language, I can't see captions, facebook video, March 27)
In India, the government issued “disability inclusive guidelines” to states (Daji World, March 27). See also Government Issues Protective Guidelines (Disability Law Initiative, March 30).
In Ireland, statement on applying the UN Convention on the Rights of Persons with Disabilities during the pandemic (Inclusion Ireland and others, April 14)
In Japan, a statement on COVID-19 and persons with disabilities from the Board of Directors of Japan Society for Disabilities Studies. (April 6)
In Philippines, a petition with recommendations on Disability-Inclusive Response (April 8).
In Spain, recommendations for the short-term management of the pandemic from persons with disabilities and their families (CERMI on EDF site).
In the USA, a letter from Elizabeth Warren and other senators to the disability community details some of the disability supports ensured (Facebook post, April 7) Discussion of their efforts in The Hill (April 10).
International response and mainstreaming of disability
An analysis of the UN Global Humanitarian Response Plan from a disability perspective (LFTW, March 31).
A policy brief Beyond sex and gender analysis: an intersectional view of the COVID-19 pandemic outbreak and response. (academics from University of Melbourne and Queen Mary University London)
Situation in residential facilities
Residential facilities, institutions, or care homes are particularly at risk from spread of the coronavirus and have led to an awful proportion of deaths from the virus so far. The main discussions have been around facilities for older persons rather than persons with disabilities, but we can assume prevalence of disability will be high within them. There are also care homes or other institutions for persons with disabilities specifically. Prisons may face many of the same risks and neglect, and persons with disabilities are also often overrepresented in incarcerated populations.
Many countries are either under-counting or not fully reporting the number of deaths in care homes.
A call from European Disability Forum for immediate government action on residential institutions becoming hotbeds of infection and abuse. (March 31)
There are some horrific data from Europe on the number of people dying in care homes from coronavirus. According to this summary on mortality in care-homes from International Long-Term Care Policy Network they make up over 40% of deaths from Coronavirus in several countries (April 17).
As well as less complete information from other countries:
- 49% of deaths in Belgium were in care homes for older persons (up to April 16)
- 49% of deaths in France were residents in care homes (April 15)
- 55% of deaths in Ireland linked to care home residents (April 13)
- 53% of deaths in Spain estimated to be care home residents (April 16)
Discussion of findings in the Guardian (April 13). It should be noted this data — like other data on mortality of COVID-19 — is incomplete at this time.
In Australia, concerns about dangers for prisoners with disabilities (Human Rights Watch, April 16)
In France, a support platform has been set up for nursing homes and COVID-19 (J Nutr Health Ageing, April 8)
In Italy, distressing news from institutions and how the CRPD can apply. (March 31)
In Sweden, staff with no masks or sanitiser fear for residents as hundreds die in care homes (Guardian, April 19).
In the UK:
- Hundreds of care home deaths not added to official coronavirus toll (Guardian, April 9). UK care home Covid-19 deaths 'may be five times [more than] government estimate' (Guardian, April 18).
- a call on government action to avert disaster in our care homes. (Age UK, April 10).
- Care homes have been neglected and are now bearing the brunt of the pandemic. They need urgent help (The Times, April 13)
In the USA:
- Homes for the Disabled See a Surge of Covid-19 details on how facilities in New York have been affected. (New York Times, April 8)
- More than 2,200 coronavirus deaths in nursing homes (NBC News, April 10).
- Federal government ignoring dire COVID-19 situation in US Nursing Homes (Rachel Maddow interview with administrator of Medicare, MSNBC, April 11)
- After Anonymous Tip, 17 Bodies Found at Nursing Home Hit by Virus (New York Times, April 15)
- Group homes for disabled adults grapple with the spread of coronavirus (Washington Post, April 18).
- Deeper dive on the situation of a psychiatric hospital in Washington State: 'it's the worst of all worlds' (NBC News, April 17)
- CDC guidance on long term-health care facilities and nursing homes preparing for COVID-19.
As well as health-risks, there are the consequences of institutions being closed off to visitors.
- In Australia, concerns about the effects that visitor bans will have. (SMH, April 8)
- In the UK, some care home residents to receive video devices to stay connected (LangBuisson, April 9).
- In the USA, Families struggle with separation as visiting is stopped (Disability Scoop, March 31)
Concerns that persons with disabilities will be left behind
We need to change the language around COVID-19 (Devex, April 14)
Will the SDGs Still be Relevant after the Pandemic? A Disability Rights Perspective (IISD SDG Knowledge Hub, April 14).
Opportunities and challenges for disability inclusion during the COVID-19 pandemic (Global Disability Innovation Hub, April 15)
The Unproportionable Burden of Pandemics on Women and Women with Disabilities (thinkpiece by UN experts)
COVID-19 doesn’t discriminate against refugees with disabilities. Neither should our response (Euronews, April 10).
Disability and COVID-19 in developing countries (Motivation UK)
Discussion on persons with deafblindness in the COVID-19. Includes recommendations for inclusive response and a facebook group on the issue. (Disability Rights Fund, March 30)
Reflections on disability in the times of epidemic and plague, drawing comparisons from the Black Death to the UNCRPD (in Spanish, BID, April 3)
Reflections on persons with disabilities, inclusive development and poverty from Disabling Barriers Across Borders (April 8 and 16)
In Australia, concerns that persons with disabilities will not be able to get their regular assistance (SMH, March 26) and calls for more support for disabled indigenous peoples (National Indigenous Times, March 27). “I feel like a sitting duck” and other stories of persons with disabilities and health conditions (Guardian, April 1)
In Bangladesh, “their struggle is double”: persons with disabilities seeking for relief and special arrangements. (Daily Star, April 4) A “nightmare time for persons with disabilities” (Dhaka Tribune, April 2). Leaving no-one behind in the pandemic (NewAge Bd, April 26).
- persons with disabilities stripped of community-based support and protective equipment (statement from EDF and others, April 3).
- The plight of Europe's disabled under coronavirus (euobserver, April 21)
In Germany concern that 13 million disabled people have been overlooked (in German, Süddeutsche Zeitung, March 30).
In Ghana, Disability And The Fight Against COVID-19 (Modern Ghana, April 3). Part two. (April 10).
In India, the unique challenges that persons with disabilities face (The Hindu, April 13).
- The Impact of COVID-19 on the Blind and Visually Impaired in Indonesia (AIDRAN, April 1).
- COVID-19 and the forgotten people (IDA, April 16).
- protest at “massacre of the innocents” of persons with disabilities and older persons a joint-statement condemning neglect and lack of treatment. (March 30).
- Discussion of some key issues for persons with disabilities (Luiza Fazzi, 26 March)
In Kenya, discussion on effect of COVID-19 on persons with disabilities (video with subtitles, April 11).
In New Zealand, an appeal that “disabled people can't be left to fall through the cracks” (The Spinoff, March 30)
In Morocco, persons with disabilities should not be left behind (in French, Menara, April 13). Persons with disabilities are more at threat from Corona, (in Arabic, Hes Press, April 17)
In Nigeria, concerns for persons with mental health conditions based on their mistreatment (Human Rights Watch, March 30).
In the UK, a survey of over 800 persons with disabilities (April 8) at the end of March by Research Institute for Disabled Consumers shows that:
- Only one in five disabled and older people feel the government is doing enough to support them during the Covid-19 outbreak.
- 50% of people with care support needs are no longer receiving health or personal care visits to their home.
Also in the UK:
- the Parliamentary Committee on Women and Equalities has launched an inquiry on the impact of coronavirus on those with protected characteristics.
- Reminders to think more carefully about our attitudes towards ageing (Center for Ageing Better, March 31)
From the USA:
- The economic stimulus package includes “nothing that the disability community asked for” (The Hill, March 26).
- “Disabled, not disposable” testimonies from Rooted in Rights (Youtube, March 26)
- Discussion of discriminatory attitudes to disability in Settling Some Old Arguments About Ableism (Forbes, March 30).
- Coronavirus shows everyone what people with disabilities have known all along (Seattle Times, March 30).
- People with disabilities are the forgotten vulnerable community in the age of COVID-19 (The Hill, April 7)
- People with disabilities will remember your words and actions when COVID-19 is over (Sheri Byrne-Haber, April 9).
- The deaf community are “forgotten victims” in the pandemic (OZY, April 25)
Hand-washing. Useful points on supporting hand-washing when water is scarce (NPR, March 30, not related to disability).
- Equality, inclusion and rights in water, sanitation and hygiene response (Rural Water Supply Network Blog, April 3, includes disability)
- Inclusive WASH will save lives during COVID-19 spread (CBM Australia, April 20)
Information and Communications
There have been different initiatives to ensure communication with deaf people while wearing a mask. Face masks pose new challenges (CBS Chicago, April 7)
- Tips for health workers on communicating with deaf people while wearing a mask. (Enhance the UK, March 25)
Masks can be made that have clear windows showing the mouth.
- See “the communicator” a model in the US approved by health authorities.
- A college student in the US makes masks for the deaf and hard of hearing (Lex18, March 31). More on Interesting Engineering, (April 4)
- Also in Indonesia (The Jakarta Post, April 13).
In Brazil, government recommendations for professionals who assist persons with disabilities or rare diseases. (April)
In Canada, accessible information on key COVID-19 information and concepts for people with print disabilities or those with slower internet connections. (National Network for Equitable Library Service, April 17)
- guidance on hygiene with wheelchairs and assistive devices and tips for persons with visual disabilities. (In Arabic, Helm facebook posts, March 26)
- Government launches app to get information to persons with hearing and speech impairments. (Daily News Egypt, April 16)
- accessibility of information in different EU Member States, collected by the European Federation of the Deaf.
- Call to act now to “ensure equal access and choice of communications for persons with disabilities” (EDF, April 21)
For India, WHO introduction to COVID-19 in Indian Sign Language.
In the UK,
- Conversation with the founder of the campaign #WhereIsTheInterpreter (Hear me out, April 7)
- collection of resources from the Research Institute for Disabled Consumers (April 8).
- UK’s deaf and blind communities demand action over lack of coronavirus help (Channel 4 feature, April 20)
From the USA:
- Vital Coronavirus Information Is Failing the Blind and Visually Impaired (Vice, April 9)
- Lack of Interpreters Cause Fear and Confusion Among the Deaf in New York State (Spectrum News, April 7)
- Resources for the disability community (Access Living, April 9).
- Gallaudet University's actions to support deaf and hard of hearing community with information, including virtual town halls. (Washington Times, April 2)
- In New York City, resources for persons with disabilities from the Mayor's Office of Persons with Disabilities.
- Reflections from sign-language interpreters. NYC's sign-language interpreter on pandemic work (NBC New York, April 9) Deaf Interpreter Rupert Dubler On His Role During The Coronavirus Crisis (WBUR, April 17)
In Zimbabwe, accessible information is far from a reality, and efforts from the disability community to change that. (IDA, April 16).
Isolation and physical distancing
Good advice on how to approach conversations about social distancing as humanitarian negotiators - not specific to disability (The Conversation, March 27)
In Egypt, guidance for persons using assistive devices or wheelchairs on protection (in Arabic, ihelp, March 30).
From the UK:
- a blog reflecting on the language that can shape public behaviour (Neil Crowther, March 28). “Because we care about each other” (Social Future Blog, April 14)
- Lessons we can learn from the disabled community during lockdown (Marie Claire, March 30)
- Housebound: a guide to self-isolation (Chronic Illness Inclusion Project, March 31)
From the USA, discussion of the effect of physical distancing on persons who are deaf and blind. (Washington Post, April 8)
- Guidance Note on making COVID-19 response Age & Disability-inclusive (Protection Working Group, Cox's Bazar, April 12).
- Concerns for refugees with disabilities in Cox's Bazar (Twitter video with captions, Humanity and Inclusion, April 1)
- Brief guidance note - A disability-inclusive COVID-19 response from the Syria Protection Cluster in Turkey (April 9)
Limited medical resources and its allocation
EDF has a compilation of guidance available on ethical medical guidelines and includes advice in their letter to leaders of EU countries.
IDA recommends that “persons with disabilities in need of health services due to COVID19 cannot be deprioritized on the ground of their disability”.
WHO has guidance on Managing Ethical Issues in Infectious Disease Outbreaks (2016). Treatment of discrimination but only passing reference on disability.
Context to better understand these discussions
- Separating “health condition” from “vulnerability” from “need for support” (Chris Hatton, March 30, UK context)
- Different areas of disability discrimination in medical triage and actions to be taken (Hastings Center, April 2, US context).
- COVID-19 Triage and Disability: What NOT To Do (Bioethics.net, March 30)
- Discussion of discrimination in Fatphobia, Ableism, and the COVID-19 Pandemic from US context. (Disability Visibility Project, March 30)
My own reflections as I try to understand this subject
For me one of the important pieces of context is how the discussions are framed. So much of the public debate is a bit careless about what “priorities” should be, and the general threat of medical rationing. Much of the general discussion in public does not seem to be directly related to the specific mechanisms that health systems are using and may have to use in future. As well as offensive comments in public discussion, some of these have been reproduced by health services, distant from the point of any triage itself.
This is especially harmful because the general discussion has been framed in terms of stigma and inappropriate categories. The framing of “older persons and people with health conditions” seems to be medical categories, but this is only apparently so. Their lack of objectivity comes from equally central topics that are being left out, such as more men are dying from COVID-19 (The Lancet, April 11) and the factors that contribute to this.
Am I expendable during this pandemic? A doctor “might even take my ventilator” for other patients. (Alice Wong on Vox, April 4, USA)
“I know my life will not be saved in this pandemic” (Lucy Watts on BBC, April 6)
Responses by Country
- Who gets medical care during the pandemic — and what does that mean for persons with disabilities? (CBC, April 5).
- “Draft” guidance in Ontario with concerning content (Toronto Sun, April 7)
In Spain, the committee for bioethics said that disability could not be a reason not to prioritize medical treatment (in Spanish, Europa Press, March 26).
In the UK.
- Covid 19 and the rights of disabled people (Disability Rights UK, April 7) Statement supported by the disability community on treatment and health care.
- Joint-statement on rights of older persons to treatment. (March 30)
- Statement from organisations that work on disability.
- There has been back and forth on the criteria being used in England. The standards were amended after a proposed legal challenge (Hodge Jones and Allen, March 31). Clarifications were issued to exclude use frailty criteria for people with long-term stable disabilities (NHS, April 3).
- A health system “score” tool was leaked and seems hard to resolve with the other official statements. (Financial Times, April 12) Clarifications
- Guidelines about who could be too frail for treatment must not discriminate against disabled people (Guardian, April 9)
- Doctors have been giving bad advice or asking people to sign “do not resuscitate forms”. Some doctors practices apologised afterwards. (BBC, April 1 and 9) In other places persons with learning disabilities were told they would not be prioritized for treatment. (HSJ, April 4) Fury over do not resuscitate notices (Disability Rights UK, April 3) The DNR notices were called unacceptable by healthcare regulator (Guardian, April 1).
In the USA.
- Discussion of how the Disability Community Fights Deadly Discrimination Amid The COVID-19 Pandemic (Forbes, April 14)
- The Department of Health and Human Services Office for Civil Rights gave guidance on preventing discrimination with a particular focus on persons with disabilities. (March 28). See the bulletin itself and coverage in NPR, and New York Times.
- Campaign #NoBodyIsDisposable to fight discrimination in COVID-19 triage.
- Don’t deny ventilators to disabled patients (Washington Post, April 6)
- Americans With Disabilities Are Terrified, (The Atlantic, April 3).
- Healthcare rights sheets for persons with disabilities to know and advocate for their rights. (DREDF, March 28).
- In California, Public Health statement clarifying it is unlawful to ration care based on disability status. (March 30)
- Alabama's and Washington's disaster preparedness plans were challenged in the courts for planning to deprioritize treatment to some persons with disabilities (ProPublica, March 27).
- Discussion of ageism in Colorado's Crisis Standards of Care (This Chair Rocks, April 13).
Disaggregating data around health impact
In general there is little disaggregation of data in information on coronavirus cases and persons with disabilities.
Long discussion from England about recording and analysing COVID-19 related deaths amongst people getting social care and disabled people (Chris Hatton, April 13)
Recovery from the disease
There is a question about whether people who go through COVID-19 can acquire long-term physical or mental health conditions, or about what extent of rehabilitation is needed. I've seen some discussion (Los Angeles Times, April 10) of difficult recoveries (Washington Post, April 3) but not so much detail yet.
In Brazil, discussion identifying how ableism contributes to the President's dismissal of the virus as a “little flu” and suggestions to ease lockdown (Somatosphere, April 17)
In France, lockdown measures eased for persons with autism (Metro, April 2)
In India, the lockdown measures:
- have “left persons with disabilities outside the doorway, again” (ThePrint, March 27).
- Persons with disabilities are facing Extra challenges during the lockdown (Vice, April 2).
- A more detailed report on challenges of persons with disabilities: “We can't walk, can't see, how can we do lockdown?” (in Hindi, BBC, April 2).
- From the perspective of a deafblind person (Newz Hook)
- Lockdown worries compounded for those with chronic ailments (Deccan Herald, April 9).
- Difficult for people with disability to cope with daily tasks (Your Story, April 15)
- The government offers contact details for persons with disabilities to raise grievances in each State.
In Kenya, a man with mental health conditions “reportedly beaten to death by police enforcing curfew”. (Citizen Digital, April 2)
- the challenges of living independently during the pandemic (ENIL, March 31)
- Some of the ableism and discrimination that persons with disabilities face in lockdown (iHuman, April 11)
In the UK, exceptions made to government lockdown guidance for people with specific health needs. (Bindmans, April 8) Rules relaxed for people with autism and learning disabilities (Guardian, April 14).
Benefits, support services and social protection
Internationally, a briefing on Disability Inclusive Social Protection Response to the COVID-19 Pandemic from the UN Partnership for the Rights of Persons with Disabilities. See also this video that summarises the guidance on inclusive social protection (Center for Inclusive Policy, April 21).
- calls for care workers for disabled people to receive protections (SBS News, April 8).
- Disability Support Pension excluded from benefits that will be given a supplement. (ABC, April 19)
In Canada, Ontario closed its Assistive Devices Program after deeming it non-essential (The Star, April 13)
In Europe, a joint-statement on persons with disabilities stripped of community-based support and protective equipment (EDF and others, April 3)
In New Zealand, home care workers forced to reuse protective equipment (Stuff, April 12).
In the UK:
- a policy briefing on COVID-19 and the welfare system (Leonard Cheshire, April)
- Guidance on social care for autistic people and people with learning disabilities (SCIE)
- Those accessing benefits through video link can have access to British Sign Language interpretation.
In the USA, A Deadly Poverty Trap: Asset Limits in the Time of the Coronavirus discussing efforts to lift restrictions on receiving disability benefits. (Center for American Progress, April 7)
Digital accessibility and inclusion
Guidance on holding accessible virtual meetings from the International Foundation for Electoral Systems (IFES). (April 9)
A note on accessible remote meeting guidelines - neurodivergent participants from UCL.
“Inclusive communication isn't just about technical platforms” - reflections from Business Disability Forum in the UK (April 8).
US concerns about the web getting less accessible for persons with disabilities (Sheri Byrne-Haber, April 7).
Education and young people
- Reflections and information from a few countries on how coronavirus affects learners with disabilities (World Education Blog, March 30)
- Tackling inequity in education during and after COVID-19 (World Bank Blogs, April 20)
From Spain, a guide on educational and fun games for children with different abilities. (In Spanish, Discapnet)
In the UK, 'we're on our own': how the pandemic isolates families of disabled children (Guardian, April 15)
In the USA:
- Educating all learners - An alliance dedicated to equity for complex learners.
- With Schools Closed, Kids With Disabilities Are More Vulnerable Than Ever (NPR, March 27).
- Kids with disabilities struggle to adjust as schools close (NBC News, March 31)
- In Our New Reality of Virtual Learning, We Can’t Leave Students with Disabilities Behind (Rooted in Rights, April 7)
- Accessibility Suffers During Pandemic (Inside Higher Ed, April 6).
- Disabled Students Already Faced Learning Barriers. Then Coronavirus Forced an Abrupt Shift to Online Classes. (Chronicle of Higher Education, April 7)
- Educators Get Creative To Serve Students With Disabilities (NPR, April 15)
Food, supplies and shopping
There are many reports of the difficulties persons with disabilities and their families are having in shopping and getting basic supplies.
- report that COVID-19: Grocery delivery delays a disaster for disabled people (The Province, April 5)
- Blind man says store clerks are infringing on his human rights (CBC, April 17)
In Uganda how to ensure food access by persons with disabilities (The Independent, April 15)
In the UK, disabled people left off coronavirus vulnerable list go without food (Guardian, April 19.
The pandemic will seriously affect health and health services outside of COVID-19 itself. Health services will be overwhelmed, or unable to provide normal services, and persons may be reluctant to seek them out.
In the UK, BSL Health Access provides on-demand sign-language access to health services.
In the USA, fake news spread by the government about drugs that can be used for treatment of COVID-19 have threatened supply of those drugs for those who need them. (Rooted in Rights, April 20)
Absence of transport can be fatal a story from Uganda (IDA, April 14)
I've seen a number of cases being reported that persons with disabilities are being rejected assistance in using transport. (Example tweet, April 5)
Work and skills
The changing ways we are working offer a model for the future.
- COVID-19's isolated world is the norm for people with disabilities (World Economic Forum, April 7)
- What the Disability Community can teach us about working remotely (Microsoft Accessibility Blog, April 1).
- make today's flexible working arrangement stick after the pandemic. (OZY, March 29)
- The coronavirus crisis proves reasonable workplace accessibility has been possible all along (QZ, sign-up required, April 2)
The Business and Disability Forum (in the UK) has a useful collection of resources covering disabled employees, customers, and health and wellbeing.
In India essential government staff with disabilities were exempted from their services (via NCPEDP, March 27).
In Uganda, LFTW supported women with disabilities to make soap. (20 April)
A research query providing information and practical guidance to support gender-based violence (GBV) practitioners to integrate attention to disability into GBV prevention (Gender Based Violence AoR Helpdesk)
Advice I found useful personally
Article on how to cope with radical uncertainty helpful with concepts and practical advice (Guardian, March 28).
A reminder that anxiety and depression during COVID-19 pandemic are features of ‘mental wellness, not mental illness’ (RCNI, April 2)
Useful advice from the UK government on mental health and wellbeing aspects of coronavirus (March 31) and on how to support children and young people's mental health (March 30).
Mental health for essential workers is particularly challenging.
- A guide on protecting psychological wellbeing of healthcare staff during the coronavirus pandemic. (British Psychological Society, March 31).
Discussion on homeworking: isolation, anxiety and burnout, and how staff and employers and respond to it (Financial Times, April 16)
In the UK, a sample of over 2000 people in late March found resilience and distress (PsyArXiv Preprints, April 18).
Mental health services
Important reflections on Digital Mental Health Technologies (Melbourne Social Equity Institute, March 31)
Discussion on mental health services provided digitally and future opportunities that gives (JMIR Mental Health 2020, March 26).
- A collection of the best chair exercise videos (Words I Wheel By, April 7)
- Advice on physical exercises that can be done in a chair, or wheelchair. (Get Yourself Active, from the UK).
- Stay at Home Wheelchair Workouts (New Mobility, April 1)
- The School of Strength, fitness videos from the Special Olympics.
- Audio exercises for “eyes-free fitness” (Blind Alive)
- Home workouts from Parasport UK.
Online, KineticLight has calls and response for quarantine videos inspired by disability dance. (Facebook)
In the UK:
- The Phil and Simon show, a great disability podcast, is doing regular interviews with disabled people during the lockdown - from policy to personal experience.
- StayingInn is a “virtual pub” for those in self-isolation.
- #CripsWithoutConstraints, three month digital programme from Graeae, a disability-led theatre company: “a play, a podcast, a picture”.
In the USA,
- My Dearest Friends Project (DisArt and Oaklee Thiele), documentation of collective experiences of disability community. Published on instagram.
- blogpost on the Virtual Home Building & Rebuilding of the disability community (Disability Visibility Project, March 26).
Coming out of lockdown
Some areas have already come out of the strictest lockdown measures. This will be a complicated and controversial choice for countries. There are many disability-related concerns and need for nuance or provisions in measures taken out of lockdown.
The Australia Management and Operational Plan anticipates stand down. Further details are in the planning, and the main text is:
The disability support sector and health care settings providing care for people with disability will advise on the timing and impact of reducing enhanced clinical COVID-19 outbreak services; and support stand down of measures. They will also manage the transition of novel coronavirus outbreak specific processes into business as usual arrangements as appropriate; and assist in communicating public messages regarding changing risk and stand down of COVID-19 outbreak measures.
Other countries and contexts will need to develop these approaches more fully immediately.
Rebuild and Recovery
Many persons with disabilities are reflecting that moving online has, at least for some, removed old barriers.
- The coronavirus response has created a more accessible society – but how long will it last? (Guardian, April 12).
- Covid lockdown opening up world for people with disabilities (Guardian, April 20)
In Europe, key points on economic recovery planning and planning for sustainable inclusive societies (EDF Open Letter)
Consultation and petitions
The Disability Rights Monitor was launched by IDA and a coordinating group of disability organisations. It will gather information on how countries are protecting the rights of persons with disabilities, and the situation of persons with disabilities. National disability organisations are asked to distribute the survey to government agencies, key stakeholders, and persons with disabilities themselves.
- See the survey in multiple languages, more about the coordinating group and guidance for organisations.
Survey from the World Blind Union on impact of COVID-19 on persons who are blind and partially-sighted.
Petition to Implement the ASEAN Enabling Masterplan 2025 for a Disability-Inclusive Response to the COVID-19 Crisis.
How is COVID-19 Impacting Digital Accessibility? a Deque Systems Survey launched in partnership with the IAAP and G3ict Research.
A survey into the effects of COVID-19 on social trust, mental and physical health, Global Covid Study, from a team of researchers around the world.
- IDA weekly Disability and Coronavirus briefing on IDA facebook page. 12pm EST.
- C4All COVID19 Webinar 6: Accessible Online Platforms for Capacity Building and Training with C4A Signatory Cities, Cities for All, 11am EDT.
- Covid-19 and care homes in LMICs, by Corona Older, 2pm BST.
- C4All COVID19 Webinar 7: Emerging Trends (circular economy, AI and IoT, etc) to Scale Inclusive Humanitarian And Community Resilience, Cities for All 11am EDT.
- C4All COVID19 Series Final Webinar: Build Back Better: Defining the new normal for people with disabilities and older persons in local pandemic response, Cities for All, 11am EDT.
- COVID-19 and Mental Health webinar series from Lancet Psychiatry and other mental health bodies. Every Tuesday 4pm EET.
In Bangladesh, the Bangladesh Business and Disability Network (BBDN) is working with its member organisations to provide immediate humanitarian response. I gave to this appeal and recommend it if you are able to donate. Persons with disabilities will be among the hardest hit by the shocks of this crisis. I know BBDN and the work of their member organisations involved in the response and I've been impressed by them over the years, and their efforts are now needed more than ever. International donations can be made through a gofundme by Murteza Khan, the CEO of BBDN.
Sense Emergency Coronavirus Appeal 2020
The disability community around the world has done so much work in the past month. I feel like this massive round-up only caught a small part of it. I appreciate colleagues sharing on social media - from where I scrape most of this information. See a twitter list on disability and development for the people I follow.
Thanks also to the colleagues I've been in touch with and the kind words and support about this newsletter. And to you for getting here!
Do be in touch with information I can include in future newsletters.
Fingers-crossed and hands-washed for the future. Take care and best wishes,