Madame Chair, distinguished members of the Committee, partners and allies,
You are told not to leave your home. No one can visit. Food and other supplies are limited. You are waiting for authorities to tell you when you can enjoy your freedom again. You feel despair, isolation and a lack of autonomy.
Long before the Covid-19 pandemic, this was the daily reality for many people with disabilities, especially those living in institutions including psychiatric hospitals across the world. Many of us have now had only a small glimpse of what it can be like to live under such restrictions.
Perhaps we can better empathize with what it’s like to be cooped up in one place and what that can do to our mental and physical health. But our lockdown is temporary. Imagine what it must be like if this were the norm: living in isolation, deprived of friends and freedom, not just for months, but for years, and in many cases until you die.
As the world continues to be gripped by the COVID-19 pandemic, there has never been a more important time to consider what “Building Back Better” means. “Better” implies more inclusive, empowering the more than 1 billion people with disabilities globally and making sure their voices are heard. “Better” means more accessible, enabling people with disabilities to participate in our communities. “Better” also conveys more dignity, especially for those relegated to the margins of society because of poverty, disability or both.
Before the pandemic, people with disabilities already faced exclusion and discrimination daily. The shortcomings in our policies and practices only became more apparent during COVID-19 recovery efforts. Staffing shortages in nursing homes have left many older people with disabilities without adequate care, leading to extreme weight loss, dehydration, infected bedsores, and long periods of isolation. ‘This is no way to live,’ an 80-year-old man in a nursing home in the United States told us. People with disabilities are more likely to have become unemployed due to the pandemic. A man with a hearing disability in Malawi told the UN that he had to eat less because of reduced income, and even getting food during the pandemic has been difficult. Schools moving to remote learning have often been inaccessible to students with psychosocial, auditory, or visual disabilities in particular. One mother in Italy, whose 13-year-old son has autism and is nonverbal, said: “Some children with disabilities can access remote learning with ease, but for him it’s impossible. It’s impossible to attract his attention through a screen for more than four minutes.” In some countries, information about Covid prevention has not been accessible for people who are blind, deaf or deafblind, putting them at higher risk.
In a UK parliament hearing on Covid-19 and disabilities last June, advocate Fazilet Hadi, from Disability Rights UK, summed up best the feeling of being undervalued and forgotten during the pandemic: “For some of us, it showed how far away we are from being equal members of society. Despite good intentions and maybe goodwill, the value of our lives is not completely embedded in society.”
To reflect the “inherent dignity” and equal value of each human being, the blueprint for the “Building Back Better” agenda and the actions that follow need to have human rights as the foundation. There is too much room for vague statements and empty promises. Governments and UN agencies have an opportunity to take concrete steps.
First, they should include people with disabilities in Covid-related planning efforts, not only to realize the principle of “Nothing about us without us,” but also to benefit from their expertise and insights. We must recognize intersectionality and listen to the experiences of people with diverse disabilities from all backgrounds.
As we know, the virus that causes Covid-19, like other infectious pathogens, poses a higher risk to populations that live in close proximity to each other. This risk is particularly acute in places of detention, such as prisons, jails, immigration detention centers, and psychiatric hospitals and residential institutions for people with disabilities and older people, where the virus can spread rapidly if protective measures are inadequate, and especially if access to health care is already poor. Another at-risk group are people with psychosocial disabilities who are chained in homes or overcrowded institutions without proper access to food, running water, soap and sanitation. In many countries, the Covid-19 pandemic has disrupted basic services, leading to people being shackled for the very first time or returning to life in chains after having been released.
When quarantines or lockdowns are imposed, governments are obligated to ensure access to food, water, health care, and care-giving support. Many older people and people with disabilities rely on home and community services and support. Ensuring continuity of these services and operations is key. This means that public agencies, community organizations, health care providers, and other service providers should be able to continue performing essential functions to meet the needs of older people and people with disabilities. Disruption of home- and community-based services can result in the institutionalization of persons with disabilities and older people, which can lead to negative health outcomes, including death.
Governments should adopt measures to mitigate the disproportionate effects on children with disabilities who already experience barriers to education. Governments should focus on adopting strategies that support all students when schools are not open – for example, monitoring those most at risk, creating safe, inclusive learning environments and ensuring they receive printed or online materials on time, with particular attention to students with disabilities who may require adapted, accessible material and other accommodations.
Unless we fully include the more than 15% of the world’s population who live with a disability, we can’t truly “build back better.” The human rights of people with disabilities need to be front and center to re-build our world to be better for all.