As concerns about the coronavirus continue to mount, one organization is reminding governments and communities not to forget about people with disabilities. World Enabled, founded in 2003, aims to build inclusive societies for people with disabilities and older persons.
With COVID-19 continuing to spread, medical professionals have continuously explained that the elderly and people with underlying conditions are at risk for worse outcomes with the virus. Dr. Victor Pineda, the founder and president of World Enabled, wants to refocus on how governments and the medical community can include these communities in the pandemic response.
To address this, World Enabled has organized a webinar series devoted to how governments can craft the most equitable policies for disability access during the pandemic. Cities for All: Equity & Access in Times of Pandemic.
Health Stories Project spoke with Dr. Pineda to discuss World Enabled, the impact of COVID-19 — both for him and for people with disabilities — and the Cities for All webinar series.
Editor’s Note: The interview has been edited and condensed for length and clarity.
How does World Enabled aim to help people with disabilities and the elderly?
It’s a global non-profit that’s advocated for a transformation in the way that cities and governments address resiliency, specifically for inclusive urban innovation and urban planning. We are very lucky to have got a chance to shape this agenda over the last 20 years, specifically by helping to negotiate the U.N. Convention on the Rights of Persons with Disabilities.
How do you define disability?
In [the U.N.’s] global treaty, they define disability as an evolving concept. It’s an experience that’s individual with their environment. So, a disability isn’t just a condition or a diagnosis. Disability is actually the interactive experience of an individual with an environment that creates barriers.
Now the ADA defines disability as when a person has a physical or mental impairment that substantially limits a major life function. But what we have to realize is that “impairment” doesn’t just exist without a relationship to an environment.
For example, even though I can’t walk physically — my muscles are too weak — the fact that I have a wheelchair, and I live in an environment that has accessibility, means that I’m not mobility impaired. In some ways, I’m mobility advantaged because I can move around the university where I teach and move up and down the hills without breaking a sweat. So, I think you have to reposition the conversation and the context around disability.
Since World Enabled began in 2003, what stands out to you as the organization’s most important contribution to disability access and inclusion?
The most important thing to realize is that there is a global struggle and global fight for disability justice. And that means that ultimately, we come from a world that wasn’t built for many of us. We come from a legacy of not only racism, sexism, and xenophobia, but also ageism and ableism, where you value a particular group of people or a certain type of functions over others.
You see that now [with the coronavirus] with health rationing and decisions about whether you give somebody a ventilator or life support services. Ethical questions are being brought into play with this coronavirus. What we’re trying to do at World Enabled is ensure that there are no laws, no practices that put people with disabilities in unfavorable positions. We can empower, educate, and inform key decision-makers to ensure people with disabilities are not left behind.
Not only are people with disabilities highest at risk, but they also face undue discrimination, challenges, and lower outcomes in terms of access to education, health, and employment. They’re four times more likely to be injured or die than non-disabled people — not because they’re inherently a danger to themselves or those around them, but because we fail to consider the breadth of the human condition, and the way we design our public policies, our cities, and even our health policies. So, we’re changing that.
How are you feeling about the coronavirus, both personally and for what it means for people with disabilities?
There’s no risk and no conversation that is more important right now than how we are going to document, assess, and learn from this experience. It’s almost as though the world is completely caught off guard, and all of our institutions and systems are unprepared to address this tremendous risk.
I’m a person who lives with a high level of risk — I have insufficient pulmonary function due to muscular dystrophy; I have a neuromuscular disease. My muscles and lungs aren’t very strong. So, I use a wheelchair, and I have this machine over my face that helps me to take deep breaths.
If I were to catch the coronavirus, there are a range of things that would completely disrupt my life. I would become a threat to those immediately around me who support and care for me. If I were to try to beat the coronavirus, it would be incredibly challenging to maintain the level of support and cleanliness given all this personal protective equipment that’s needed that no one has enough of. If I were to go to the hospital, I would be told that my assistants couldn’t be with me. I’d be completely by myself, and this machine that I use to breathe would be taken away.
What kind of changes have you had to make to your lifestyle given the stay-at-home order, living in Berkley, CA? What kind of preventive measures have you or your assistants had to take?
I have to think about who is taking care of me: Are we sure that they’re COVID negative? Could they be asymptomatic? Do I have enough masks? Do I have enough gloves? I ended up going on Amazon and finding a Halloween doctor costume, and I bought two of them because they had doctor coats. I ask my attendants to wear the doctor coats, in case they have the virus on their clothes.
Ultimately, I have to create a closed system. If we get things delivered, we make sure they’re wiped down. If anybody does happen to go outside, we make sure they have masks and will change their clothes when they come back in. We have a very strict regimen to ensure this virus that is floating around does not come inside.
You’ve just kicked off an eight-week webinar series for leaders and institutions on how they should respond to the coronavirus. Can you give an overview of what these webinars entail and why they’re important?
It’s a very personal experience for me, and it’s also a crucial point in history where we have to assess who we value and how we prepare to build a resilient world. How do we build back better and ensure that we’ve learned our lessons?
Our project is called Cities for All. Cities for All is a global network of cities and other urban actors and stakeholders who are committed to building an accessible environment. During these webinars, we’ll be looking at how we can build strong advocacy initiatives. How do we create a network to coordinate activities with other partners? We want to make sure there’s an inclusive emergency response, so people aren’t left behind. So, I’m excited about these webinars and my organization, World Enabled, is lucky enough to lead this Cities for All project and get others involved.
You’ve talked about concerns that people with disabilities are being devalued or overlooked. We’re hearing about reports from countries like Italy, where doctors have to make decisions on who receives care due to medical shortages and overwhelming numbers of patients. What is your response to the kind of ethical quandary on who should receive care when there is a shortage?
Don’t make assumptions about somebody’s life. If doctors, for example, have a patient who is deaf and the patient can’t communicate with doctors, how do the hospital administrators ensure they have a video conference line open in case there needs to be a sign language interpreter brought in? How do we make sure people’s lives have dignity, even with the biggest challenges?
It’s really about preparing and being aware, but also not making value judgments on lives. Take an equitable approach. As a medical professional, are you able to be informed without making assumptions that have real consequences?
I think we need to have partnerships and new ways to work together. That’s what this webinar series is all about. It’s important not to view people with disabilities as just vulnerable. We are full of talent, creativity, and ideas. We have resources to bring to the table.
Looking ahead, what do you think the most important takeaway is going to be from this pandemic on how governments and institutions should prepare for disease, particularly for people with disabilities?
In our eighth webinar, we’ll be covering the way forward and the new normal for people with disabilities because of the coronavirus. It will be important to provide continued access to all goods, services, public information, medical processes, and income security for people with disabilities.
What we have learned so far is to ensure that all pandemic responses are disability-inclusive and include people with disabilities in that conversation. We can do more together. And if you don’t intentionally include, you unintentionally exclude.