Overview and update on coronavirus and disability

26 March 2020

Hey all,

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: email me disabilitydebrief@substack.com or on twitter @desibility.

As well as precautions in our lives we need to be careful about informationI'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.

Share Disability Debrief

Overview

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.

Key resources

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:

  1. Persons with disabilities must receive information about infection mitigating tips, public restriction plans, and the services offered, in a diversity of accessible formats.

  2. Additional protective measures must be taken for people with certain types of impairment.

  3. Rapid awareness raising and training of personnel involved in the response are essential.

  4. All preparedness and response plans must be inclusive of and accessible to women with disabilities.

  5. No disability-based institutionalization and abandonment is acceptable.

  6. During quarantine, support services, personal assistance, physical and communication accessibility must be ensured.

  7. Measures of public restrictions must consider persons with disabilities on an equal basis with others.

  8. Persons with disabilities in need of health services due to COVID19 cannot be deprioritized on the ground of their disability.

  9. Organizations of Persons with Disabilities can and should play a key role in raising awareness of persons with disabilities and their families.

  10. 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.

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:

Catching-up

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).

COVID-19 Response

Overall Approach

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)

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:

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

From Australia:

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)

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:

In the USA:

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:

Treatment

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:

In the USA:

Interim measures

Lockdown measures

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.

Disability groups in the UK have been recommending what should be done instead:

In the USA:

New ways of doing things

Reflections on being disabled at this time:

On accessibility of interim arrangements:

In terms of mental health:

In Australia:

In the USA:

Going forward

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.

Acknowledgements

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