How Can We Secure a More Equitable Future for People With Disabilities?
"We've not grappled with the horrifying reality that some lives are considered more valuable."
COVID-19 has exacerbated inequality for people with disabilities around the world. They are struggling to access health care, are more exposed to the virus, and have disproportionately felt the social and economic impacts of the pandemic.
As the world begins to recover, South African activist Eddie Ndopu wants to ensure people with disabilities aren’t left behind.
Ndopu’s mother was told he wouldn’t survive past the age of 7 when he was diagnosed with spinal muscular atrophy. Now 30, he’s a United Nations (UN) Sustainable Development Goals Advocate who has worked closely with Amnesty International and the World Economic Forum.
Ndopu is joining Global Citizen in supporting the Recovery Plan for the World to advance equity for all in the wake of the pandemic. He’s also seeking to join forces with the UN, world leaders, and the private sector to establish the Global Access Fund with the goal of mobilizing at least $1 billion to boost existing initiatives in countries around advancing the inclusion of people with disabilities in the Decade of Action to achieve the Global Goals by 2030.
People with disabilities are often left out of international development budgets and there isn’t currently a global coalition that is focused on addressing the challenges people with disabilities face.
Global Citizen spoke with Ndopu about how the COVID-19 pandemic is impacting people with disabilities, the importance of the Global Access Fund, and more.
Global Citizen: What are some of the ways COVID-19 is disproportionately impacting people with disabilities?
Eddie Ndopu: The first thing to acknowledge and be quite cognizant of is the fact that if you look at the discourse around COVID, we speak about people who have underlying conditions, comorbidities, elderly populations. People with disabilities have not been explicitly mentioned, which strikes me as rather odd, considering we know that for communities who live in institutionalized settings, their risk of exposure is heightened. The interface between caregivers and people with disabilities has been disrupted at a pretty fundamental level.
That entire scenario is just not accounted for from a public policy standpoint. That has far-reaching implications for people with disabilities because if people with disabilities aren’t able to have the adequate care and the infrastructure that's required to meet day-to-day needs, then that means the risk of people with disabilities, being plunged into economic precariousness and poverty, is quite high.
There [is] a whole host of economic and health consequences that we are bearing witness to in real time as a result of this failure to account for people with disabilities as a constituency, in terms of what the global recovery would look like and access to treatment as well.
Why is the economic fallout of the COVID-19 pandemic that so many are facing especially devastating for people with disabilities?
There is a kind of cruel irony about this current moment. To be more inclusive and accessible through the use of technology, so many people [are] working remotely — people are using Zoom and various other platforms to be able to continue to work. People with disabilities have long advocated for the incorporation of these new modes of communication in day-to-day work. People with disabilities right now are unable to make use of these technologies because we are being cut out of the world of work.
We are seeing a reversal of the gains that were made as far as disability inclusion within the world of employment [goes]. The very real impact is that we just don't have access to the vaccines.
I'm speaking out of lived experience. I'm a person with a disability, I use a wheelchair. Because people with disabilities have not been explicitly mentioned and targeted as far as access to vaccines [goes], it means that we have to be sequestered. I have not left my apartment since March of last year, and I don't know when I’ll leave my apartment again. These are the very real challenges that many people with disabilities are feeling right now. Then on top of that, there is just very little advocacy, in terms of mainstream media and public policy discussions.
How can we ensure that the world creates plans for COVID-19 recovery that are equitable and don't leave people with disabilities behind?
People with disabilities are not a monolithic group. It's important that we target our interventions for people with disabilities living across the Global South because these are the people who are the most marginalized and the most left behind. [In] many countries in this part of the world, we haven’t even begun rolling out vaccines, and where they have been rolled out, they’re starting with frontline workers, health care workers. Those furthest behind the line are living through enormous precariousness at the moment.
A few things need to happen on the cultural and social side of things. We've not grappled with the horrifying reality that some lives are considered more valuable than others. We need to address the discourse ofdisposabilitythat underpins the way that we view certain people. Certain lives are on the back burner because there’s an implicit sense that for the elderly, for people with disabilities, for the most vulnerable segments of society, because these lives are already challenging and are already precarious, they shouldn't adequately be counted as a top of the priority list in terms [of] a global recovery. That needs to be addressed — these are deeply social, cultural, and systemic issues. The discrimination that existed before COVID is being amplified in a way that is quite dangerous for people who have to navigate precariousness already.
The second thing that needs to be done is that we need to look at social inequities [that] tend to manifest themselves in terms of access to health and health care. Who you are, where you live — these things matter as far as whether or not you have equitable access to health care. And then that gets compounded because health care systems already were not serving people with disabilities in the way that we need to be served.
There aren’t enough people with disabilities, for example, who have access to the assistance needed on a day-to-day basis, [like] rehabilitation needs. Many of us live with chronic health issues and need access to life-saving medication.
There's just a whole infrastructure that's not available for people with disabilities. When you add COVID to the mix, it positions many people with disabilities at a profound disadvantage.
The opportunity here is not to just be looking at health care in isolation from the broader social issues and economic issues. There's an opportunity for a new methodology in linking all of these different issues together so that we can account for people who fall through the cracks.
The way that we think about crisis and the way that we respond needs to shift dramatically for us to be able to account for all of these groups. That's absolutely fundamental in terms of what I'm doing as an advocate, a humanitarian, joining forces with Global Citizen under this equity pillar [of the Recovery Plan for the World] to create a global fund, a $1 billion inclusive development financing vehicle that will help the United Nations and the world reach people with disabilities in crisis, especially humanitarian crisis. Whatever the crisis is — famine, poverty, health care inequity — all of the organizations that are tasked with helping people don't have the resources to be able to specifically target people with disabilities.
How do you hope the Global Access Fund will secure a more equitable future for people with disabilities and support the Global Goals?
The Global Access Fund seeks to accelerate and amplify existing initiatives with the ultimate goal of ensuring that people with disabilities are adequately accounted for within the Decade of Action. We only have nine years to make good on the promise of the 2030 Agenda for Sustainable Development.
This idea needs to be operationalized and scaled up quite dramatically. The Global Access Fund seeks to support the institutions and the initiatives that are already working with people with disabilities on the ground, and scaling up their efforts, accelerating their efforts so they can do more to reach more people with disabilities.
When we speak about people with disabilities, we tend to forget that we're talking about a large constituency, about 1.3 billion people — that's about 15% of the planet. And if we look at every major crisis around the world and all of the fragile contexts around the world, people with disabilities are literally dying because people aren’t able to get to them ... This is where the Global Access Fund can fill the gap to make humanitarian interventions more responsive for people with disabilities.
I was recently speaking to somebody who worked in refugee camps about period poverty and girls and women having access to hygiene products. Girls and women with disabilities who require day-to-day care are not accounted for in that particular equation. The Global Access Fund will fund the work of activists on the ground who are interfacing with women who live at the intersection of disability and poverty and all of these other complex issues.
This interview has been lightly edited and condensed for clarity.
You can read more here about how Global Citizen’s Recovery Plan for the World campaign will work to tackle COVID-19, bringing together world leaders and governments, artists and entertainers, philanthropists, the private sector, and more, to help the pandemic for everyone, everywhere. You can join the campaign and start taking action with us right now, here.