Overview and update on coronavirus and disability
I hope you are all staying safe. Welcome new subscribers and visitors to this newsletter - it's a round-up of international news in disability and development, and these days that means mainly news related to COVID-19 and the response.
See my first update on disability and coronavirus and issues of this newsletter online.
For those of you who don't know me, I'm a freelance consultant working on disability and development for almost ten years now.
Please stay in touch with news to include: on twitter @desibility.
As well as precautions in our lives we need to be careful about information. I'm sharing a lot of links here as a reference. Especially in a fast-moving situation like this one, you're acting on information you should always double-check the source, the date, and the specific advice itself.
This is how I understand where we're at - links are below, after this introduction.
The disability community has responded quickly all over the world to the range of challenges that the pandemic has brought. As well as how to protect and treat health and lives, there are challenges of interim measures and the huge economic cost that will result from this crisis. We can think of the crisis and response in four areas, some of which will be running simultaneously: protection, treatment, interim measures and recovery.
In each of these areas disability inclusion can only be achieved through meaningful participation of persons with disabilities. We have seen in this crisis the surfacing of stigma and discrimination towards older people and persons with disabilities, and we need to stop these attitudes influencing public policy and response. Gathering and assessing data on disability will be another component essential to include this.
Protection. There is an immediate need to do no harm, looking after ourselves and making sure we don't endanger others. We need information and communications, going both ways. Public health and emergency communications need to be accessible to persons with disabilities and information about persons with disabilities and their particular vulnerabilities is needed to inform response. Persons with disabilities may have health conditions, daily assistance, institutional living, social isolation and/or economic challenges, among other issues that make them vulnerable to the crisis and might limit their ability to protect themselves and their families. Forms of disability-related assistance, economic and communications assistance will be needed.
Treatment and control. As health systems rapidly upgrade to be able to deal with the crisis, that should include their ability to be disability-inclusive in response. Persons with disabilities, or their assistants and carers, may need priority access to testing to remain safe. Health services need to be accessible and inclusive; and provision of health services needs to be done on equitable grounds. Around the world disabled people are scared we will be left behind or deprioritized in health provision. Some persons with disabilities may need particular support to be able to isolate from their families or carers in the case that one or the other shows symptoms.
Interim measures have transformed societies around the world, and may continue for some time. We need to be careful to make sure that interim legislation, policy and services does not deny or reduce the rights of persons with disabilities. As well as maintaining assistance and support for disabled people, specific measures may be needed to support those particularly affected by isolation. Extensive economic support may be needed and this could come through social protection measures and/or initiatives to support persons with disabilities and others into employment opportunities they can do from home. There are also opportunities here - as we work to make sure physical distance does not create social distance there are new things we can build. Persons with disabilities have hard-won experience in isolation and interdependence and we can make an important contribution through sharing that.
Recovery for individuals and societies could shape our world for years to come. Extensive social protection interventions and economic stimulus will be needed to recover from the human and economic costs of the crisis. Recovery programmes should be responsive to the situation of persons with disabilities. We hope that the connections we make at this time, and new ways we find of doing things, will contribute to the new health systems, economic systems and social relations that will come after this crisis has passed.
I've long felt that our work on disability can interface better with work on ageing; and now is a particularly important time of shared vulnerabilities to ally with efforts to protect and support older persons, as well as those with health conditions who may not have considered themselves persons with disabilities. As always our efforts also need to take gender into account as well as other intersectionalities.
Our work in the disability community offers a lens to find barriers and vulnerabilities, and innovative solutions to them. We have something to contribute that will make the response better able to reach everyone.
The International Disability Alliance (IDA) has detailed recommendations and a collection of resources on Covid-19 and the disability movement. See their page for updates and more details. The current recommendations are:
- Persons with disabilities must receive information about infection mitigating tips, public restriction plans, and the services offered, in a diversity of accessible formats.
- Additional protective measures must be taken for people with certain types of impairment.
- Rapid awareness raising and training of personnel involved in the response are essential.
- All preparedness and response plans must be inclusive of and accessible to women with disabilities.
- No disability-based institutionalization and abandonment is acceptable.
- During quarantine, support services, personal assistance, physical and communication accessibility must be ensured.
- Measures of public restrictions must consider persons with disabilities on an equal basis with others.
- Persons with disabilities in need of health services due to COVID19 cannot be deprioritized on the ground of their disability.
- Organizations of Persons with Disabilities can and should play a key role in raising awareness of persons with disabilities and their families.
- Organizations of Persons with Disabilities can and should play a key role in advocating for disability-inclusive response to the COVID19 crisis
The European Disability Forum (EDF) has vital contributions including an updated open letter to leaders in the European Union and a great set of further resources.
Particularly important from EDF is this message on women with disabilities and Covid-19, which includes important advice on a gender-differentiated response.
News that isn't Coronavirus
Don't worry, I haven't forgotten about the rest of the disability sector. It's too much for now, but hopefully by the end of April we can do a newsletter about more general topics. Until then I’ll try to do regular updates on Coronavirus.
In the meantime, definitely watch Crip Camp: A Disability Revolution on Netflix, a documentary on a disabled youth summer camp and the disability movement in the US. If you don't know about Judy Heumann you can also meet her talking about her book in this interview with Trevor Noah on the Daily Show.
- “It blew my mind”. (Guardian)
- “The disability community has a lot to teach a world in crisis” (Vox)
- Disability Visibility Project will host #CripCampNetflix on twitter on 1st April.
Collections of Resources
The International Disability and Development Consortium (IDDC) has a repository of resources on disability inclusion and Covid-19.
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.
If you are not already subscribed to this newsletter, then subscribe to get further updates, and see back issues online.
Taking a glimpse at subjects outside of disability:
- Gender and Data Resources related to COVID-19 by Data2x.
- COVID-19 Response Portal on humanitarian issues, by ALNAP.
- Coronavirus Preparedness & Response by Center for Global Development.
The World Health Organization (WHO) hosted a conversation on disability considerations during Covid 19. (Video with captions, March 19).
The ILO and its Global Business and Disability Network hosted a webinar on Disability Inclusion in COVID-19 responses in the World of Work. It includes an update from the work in China which I shared in the last newsletter (Youtube with captions, March 24)
A survey on people with disabilities and the pandemic was conducted by UNDRR. Responses deadline was yesterday, March 25th.
On twitter the last #AXSChat discussed COVID-19 and experiences of persons with disabilities. (March 24).
The ILO has made a call for “no one left behind, not now, not ever”:
The COVID19 crisis is new. It is requiring us all to act, interact and communicate in different ways than we are used to. However, the social inequalities exacerbating COVID19’s impact on persons with disabilities are not new. The risk in the response to the current crisis is that persons with disabilities will be left behind once again. The good news is that we already know what works. Fundamentally, we need social justice, equality of opportunities and decent work.
Guidance note from UNICEF on Covid-19 response considerations for children and adults with disabilities.
News article from the UN on preventing discrimination against people with disability in the COVID-19 response. (19 March)
- See also key messages out of this drawn by the Special Rapporteur on the Rights of Persons with Disabilities (20 March).
Statement on COVID-19 and Persons with Psychosocial Disabilities by regional and international organisations of people with psychosocial disabilities.
Statement on the Coronavirus and Hard of Hearing People from the International Federation of Hard of Hearing People who also have a dedicated page on the subject.
The World Federation of the Deaf have a resource page including guidance on how countries can make sure all Deaf people are updated on the latest news.
Inclusion Europe suggests 5-steps to prevent harm to people with intellectual disabilities and family.
In Asia and Pacific, UNESCAP has a policy brief on ensuring disability rights and inclusion in the response to Covid 19.
A summary on disability, coronavirus and international rights by Oliver Lewis (21 March).
Many other organisations have highlighted the importance of disability inclusion:
- Bridging the Gap Project on the higher risk faced by persons with disabilities or chronic illness.
- CBM has launched a Corona Aid Fund.
- Disability Rights Fund response to the COVID-19 Concerns.
- Down Syndrome International and supporting the global community during the Coronavirus crisis.
- Humanity and Inclusion on including the most vulnerable in the fight against COVID-19.
- Sightsavers and a note from their CEO on COVID-19 response
Inclusion of disability in international response
The UN Global Humanitarian Response Plan Covid 19 highlights people with disabilities throughout the document as among those most-affected and at-risk groups. Mention is made in:
- humanitarian needs assessments,
- preserving support services,
- adapted and accurate risk communication,
- engaging with organisations of persons with disabilities and
- disaggregation of data.
Concerns that persons with disabilities will be left behind
- Statement of concern on the response for persons with disabilities from the Royal Commission into Violence, Abuse, Neglect And Exploitation of Persons with Disability. (March 26)
- Interview describing the disability sector as “dangerously unprepared” (Sky News Australia, video, no captions, March 18).
In Kenya, discrimination against persons with albinism in terms of Coronavirus (Youtube, no captions).
In India, Doctors with Disabilities request for coronavirus response to be disability inclusive.
From the UK, People with 'underlying conditions' are being treated as expendable. But our lives matter (Guardian, March 19)
From the US:
Disabled people already know stillness can be caring. We know immune systems are fragile, and homes can’t always be left. Rest is disability justice, and now it’s a powerful tool to keep one another alive. My Life Is More ‘Disposable’ During This Pandemic (New York Times, March 19)
- Disabled People Are Not Simply Dispensable During a Pandemic, (Rooted in Rights, March 18).
Prevent and protect
The virus can be particularly dangerous in institutions or care facilities. See this case from the US where Covid-19 spread in a long-term care facility, and the lessons learned.
Information and Communications
In Brazil, a government portal gives clear information for people with disabilities and rare diseases and Covid-19 (In Portuguese).
In Kenya, short video with information in Kenyan Sign Language and a news repoort on how the deaf community feels left out.
In India, state governments were directed to make available accessible information. (News 18 India, March 23).
In Paraguay, the government launched an accessible communications service.
In the Philippines, reflections on the deaf community's access to information in the time of COVID-19.
In the UK:
- Collection of information from Disability Rights UK in different sectors.
- A practical guide if you're disabled from Disability Horizons.
- Links to government advice on residential care and supported living.
- Government guidance on shielding and protecting those more vulnerable on medical grounds.
In the USA:
- The Administration for Community Living has resources on what do older adults and people with disabilities need to know?
- The Center for Disease Control has a youtube channel with resources in American Sign Language.
Isolation and physical distancing
It can be difficult to communicate to people about the need to practice physical distancing. Neil Crowther has a suggestion on positive messaging for older people.
A lot of us are lucky to be able to stay at home these days, and we’re exploring how to do that. Covid-19 Creative Tool-kit is collection of ways to spend time in isolation.
From Kenya the difficulties of social isolation for persons with disabilities (Mugami Paul, March 26)
From India the challenges of physical distancing for persons with disabilities (Scroll, March 19)
In the UK:
- How are people who need carers supposed to self-isolate? (Independent, March 25)
- Personal essay on What It's Like In Coronavirus Isolation If, Like Me, You're Already Struggling With Your Mental Health (Buzzfeed, March 22)
Limited medical resources and its allocation
An urgent challenge is the threat of how limited medical support might be denied from persons with disabilities on discriminatory ground. EDF has a clear statement on ethical medical guidelines (March 24):
In countries where healthcare professionals will not be able to provide the same level of care to everyone due to lack of equipment and underfunding of the healthcare sector, medical guidelines need to be non-discriminatory and follow international law and existing ethics guidelines for care in the event of disaster and emergencies. These are clear: persons with disabilities cannot be discriminated against.
In producing these guidelines authorities must take into account their commitment to the UN Convention on the Rights of Persons with Disabilities, especially article 11 - situations of risk and humanitarian emergency.
On a more positive note, two academics suggest that this crisis can “help reframe health politics”.
In the UK:
- Medical guidelines from NICE in England initially had a “frailty” score which would have suggested many disabled people would not benefit from treatment as requiring daily assistance would have made one “frail”. Since then they updated it to exempt people with learning disabilities and some other disabilities from the guidance. Also see their response on twitter making these changes (March 23). One expert's concerns remain (twitter, March 25).
In the USA:
- I Will Not Apologize for My Needs “Even in a crisis, doctors should not abandon the principle of nondiscrimination”. (New York Times, March 23)
- May Hospitals Withhold Ventilators from COVID-19 Patients with Pre-Existing Disabilities? An important essay exploring how disability legislation affects the law and ethics around how medical decisions can be made when they need to be rationed.
- Discussion of U.S. Hospitals Prepare Guidelines For Who Gets Care Amid Coronavirus Surge (NPR, March 21)
- Disability Discrimination Complaint Filed Over COVID-19 Treatment Rationing Plan in Washington State, (The Arc, March 23).
- Whose Life is Worth Saving? “In Washington State, People With Disabilities Are Afraid They Won’t Make the Cut.” (New York Times, March 23)
- If I Get Covid-19 It Might Be Ableism – Not the Virus – That Kills Me (Yahoo, March 25)
- As A Disabled Person, I’m Afraid I May Not Be Deemed Worth Saving From The Coronavirus (Huffpost, March 25)
Lockdown and isolation measures can have serious negative impacts on the lives of persons with disabilities.
In New Zealand, this article describes the challenges faced by disabled people, including of lip-reading in masks and cost of protective gear (Stuff, March 22).
In the UK, the lockdown has already had serious affects on disabled people and there are many concerns about the results of emergency policy.
- Human Rights Watch concerns that new law puts the rights of disabled people and older persons at risk. (March 26)
- Disabled people were cut off from supplies because of “panic buying” (Guardian, March 18).
- Concern that the government “abandoned” disabled people who had been getting support for their assistance needs. (Disability News Service, March 19).
- Emergency coronavirus legislation could sweep aside the rights of those with mental health issues (Inews, March 22).
- Coronovirus Act allows ministers to suspend Care Act Duties (Community Care, March 22)
- Britain's 'vulnerable' are terrified to see our rights removed (Guardian, March 24)
- My sister has a learning disability and I can’t visit her because of coronavirus (Guardian, March 24).
- Luke Clements, a professor of law, blogs on disability and legal changes in emergency legislation.
Disability groups in the UK have been recommending what should be done instead:
- Inclusion London recommendations for central and local government and raised concerns about disabled people being left without support by new legislation (March 20).
In the USA:
- Adult day centres being closed in Minnesota affected thousands of adults with disabilities. (Star Tribune, March 17).
New ways of doing things
Reflections on being disabled at this time:
- On how experience with disability can help in a time of turmoil (Blog by Noel Joyce, March 22).
- Living with a Visual Disability during the Coronavirus Pandemic, (Blog by Charles Catherine, March 20)
- Disabled People React to Coronavirus Work From Home Accommodations, (Teen Vogue, March 24)
On accessibility of interim arrangements:
- Tips for working remotely when you’re deaf (Limping Chicken, March 23)
- How do I make and take video calls as a deaf/hard of hearing person (video with transcript, Ahmed Khalifa, March 25)
In terms of mental health:
- Coronavirus and our emotional wellbeing useful blog with further resources (CBM, March 25)
- Mental health in the workplace: Leading In The COVID-19 Context (Forbes, March 20)
- Calls to increase the disability support pension now to deal with Coronavirus, from Women with Disabilities Australia (March 24).
In the USA:
- Reflections on When schools close or go online, what happens to students with disabilities? (USA Today, March 23)
Things are moving quickly, and lots of people are now working on this. I'm not seeing information of upcoming webinars or other initiatives at the moment.
Thanks to all of those who said kind words after the last update, and shared that edition.I've been lucky to have many conversations that informed this newsletter, and people sending me news.
At the risk of leaving people out, thanks in particular to André Felix, Andrea Pregel, Carlos Kaiser, David Fidler, Felipe Ramos Barajas, Florence Ndagire, Laura Dean and colleagues on the call she facilitated, Mathieu Simard, Sisay Mamo, and Stefan Tromel.
And thanks to you for reading and being engaged in our new struggle.
Do stay in touch and until next time,
Peter “physical isolation but longer newsletters” Fremlin