Advocacy and action by people with disabilities about COVID-19

Advocacy and action that is led by people with disabilities is key to promoting change and collective action on COVID-19.

People with disabilities have a long history of advocating for their inclusion in decision making. This continues during the COVID-19 pandemic. Despite this their rights and needs are poorly articulated and rarely met by the response to the pandemic. In this third blog that summarises our Twitter Chat on disability and COVID-19 we further explore these issues.

Some elements of the response – for example new guidelines that are emerging on the rationing of care – actually undermine the right to health for disabled people. Maximising the participation of people with disabilities in every aspect of the pandemic response is both essential and ethical.

We asked what steps are being taken to include people with disabilities in the COVID-19 response.

Dialogue and communication between policy makers and people with disabilities is a critical step in ensuring that the first-hand experience of people with disabilities shapes decision making. As @annalouruddock put it, ‘The messaging should not only be *for* us, it should be *by* us.’ We should be speaking to each other, not being spoken to by people who do not know our experience.’

People with disabilities and disability experts should be included in, and working with, agencies managing the response. To understand how best to do this many organisations are working together to document the experiences of people with disabilities to be able to advocate for change.

Principles and priorities for inclusion

‘Nothing about us, without us’ is a central concept in organising around disability issues. People with disabilities need to be included in consultation and meaningful participation from the start of initiatives, through planning, implementation and monitoring. This includes in emergency, immediate responses to the pandemic and in developing longer term post-pandemic plans. For example, as children return to school it will be important to ensure that the most marginalised children are effectively included and supported. The expertise of people with disabilities will be key to ensuring this.

Disabled Persons Organisations are central to the inclusion of people with disabilities. Key issues that require specific consideration include: consultations around safeguarding; adapting information resources to meet a variety of communication needs; and ensuring accessibility of interventions in their design.

Guiding documents on inclusion and advocacy

This joint statement on persons with disabilities and COVID-19 is a particularly critical advocacy document in encouraging states to adhere to the ratified principles in the CRPD to ensure the rights of persons with disabilities are appropriately protected in the face of the COVID-19 pandemic. The inter-agency standing committee guidelines on Inclusion of Persons with Disabilities in Humanitarian Action, 2019 is also a critical guiding document.

One key piece of advocacy is a letter written by the International Disability Alliance to the Director General of WHO, which highlights the discrimination experienced by persons with disabilities when they are accessing emergency services. Specifically, they challenge the language of ‘dependency’ and ‘frailty’ being used in several contexts to deny treatment, which reflects a value judgement that persons with disability are less of a priority than others.

Language matters

We should exercise caution in the language that is used in advocacy and discussions about disability. Participants in the Twitter Chat cautioned against using stigmatising language (including on the captions used for images within documents).

Credit

The image that illustrates this blog was shared by @SongambeleO, they are promoting and encouraging good health, education, awareness and social inclusion for women, girls and children with disabilities in Tanzania.

 

<<Find out more about this series of blogs on disability and COVID-19

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