Rhodes Ahead: A Focus on Disability Leadership - Podcast Transcript
This is a transcript from a podcast on Disability Leadership. You can listen to the podcast on Spotify and Apple.
Sara Rotenberg:
Welcome to Rhodes Ahead, our series on thought leadership with the Rhodes community and partner programs. I'm delighted to be here today with Dr. Shubha Nagesh, and have a conversation about our work related to inclusion, advocacy, and accessibility for people with disabilities, before and during the COVID pandemic. My name is Sara Rotenberg, and I am a Rhodes Scholar reading for DPhil in Primary Health Care. My background is in global health and development, but my DPhil research focuses on training health workers about disability.
Sara Rotenberg:
Previously, I worked on a wide range of topics including equitable access to vaccines during epidemics, irrigation governance reform in India, and how to reap the demographic dividends in sub-Saharan Africa. During the pandemic, I have had the privilege of working with the government of Canada, the World Health Organization, and the Mission Billion initiative and the World Bank on various projects related to COVID-19 response, health financing and disability inclusion. Today, I'm delighted to be joined by my good friend, Dr. Shubha Nagesh who will introduce herself now.
Dr. Shubha Nagesh:
Thank you, Sara. So my name is Shubha Nagesh, I'm a medical doctor by training and a global health graduate from Carolyn Scott Stockholm as an investment scholar. I presently serve as the Director of Research and Community follow-up programs at The Latika Roy foundation. One of India's foremost disability organizations. We're based out of Dehradun, Uttrakhand India, which is the Himalayan state. So for 10 years now, I have initiated, developed and implemented community programs, which takes services closer to the community, either in a peripheral health facility or within the home of the family whose child was born with a developmental disability. I'm also a Senior Atlantic fellow in global health equity at the George Washington University. I'm a Gates Fellow with the executive program in global health leadership at the London School of Hygiene and Tropical Medicine. I serve as a mentor with the global health mentorships program for the disabilities cohort.
Dr. Shubha Nagesh:
And I'm also a mentor with the Canadian Society of International Health. My passion is to make childhood disability a global health priority. Previously, I have served as a clinician with the National Health Service in the United Kingdom and as a national consultant with the AIDS control program Government of India. So how did I meet Sara? As someone who works for a small nonprofit in one of India's smallest hill states, opportunities for career advancement or just to be part of peer-groups are very few. So, when I started looking around for opportunities, the Atlantic Fellowship of global health equity opened the door for me. One that allowed me to access experts, platforms, peers, and opportunities that I couldn't have imagined of, otherwise. And this experience added a whole dimension to my work. And something shifted for me in my own approach to the same work. When the Fellowship concluded, we were introduced to the Atlantic Institute.
Dr. Shubha Nagesh:
And when one of the newsletters mentioned that Rhodes Scholar who worked on disability and was looking to collaborate, I immediately reached out and wanted to connect. Sara and I started to communicate and both of us were very keen. So the pace picked up from the beginning and stayed upbeat. We discussed many ideas and I expressed an interest to write about how the pandemic had disadvantaged persons with disabilities. But also if it could become a window of opportunity for policy makers to implement universal accessibility. But this could be a watershed moment in history when accessibility could become a priority and make the world a better place for more than a billion people with disabilities and for everyone else too.
Dr. Shubha Nagesh:
So the article was eventually published in the Hindu. One of India's most respective newspapers. And since then, we've gone on to write for the BMJ global health blog around enhancing accessibility for medical doctors with disabilities in medical schools in India. And very recently they published an article in the DEVEX around centering disability in the equitable distribution of vaccines with a particular focus on disabled people. So Sara and I have found many connections in common, and we share an enthusiasm to take our work to greater heights. And who knows what than this collaboration can accomplish, because we're both very optimistic. We're firing on all four cylinders. We're popping with ideas and dynamic energy, but very importantly, they're both grounded in a deep respect for the people we've pitched to help change the world before. Over to you, Sara.
Sara Rotenberg:
I have to say it's been a real honour working with you Shubha on these important issues, especially since they're so important to me. For my passion for disability inclusion is deeply personal as I'm a person with a disability myself and also a caretaker for someone with a disability. And we were talking earlier about how we both got interested in this topic. And I think a lot of it, is this passion for me, this is really personal because I realized how little public health and global development work, talks about disability outside of a more medical model. When I did my undergrad in the US I focused on global health, but few projects or classes looked at how equity or inclusion meant and incorporated people with disabilities. And what growing up in Canada, where I had the privilege of legal protections around obtaining an education, accessing healthcare, being employed, I still face and continue to face many barriers and stigma when I choose to disclose my disability.
Sara Rotenberg:
So I was always thinking about health policy and then in the background, thinking about how the largest minority in the world, people with disabilities also wasn't included. And so I still remember the first time I took this on, was with the support of Georgetown's India initiative. And I got to spend the summer and seven months in India, looking at the accessibility of the Metro and making recommendations on how landmark infrastructure development projects could be more accessible to people with disabilities. And part of this experience is actually what drew me to working with Shubha given she is based in India, and I really admired her allyship and shared vision of how to make things accessible.
Dr. Shubha Nagesh:
Yeah, thanks, Sara. And for me, when I returned from Karolinska Institute in Stockholm 10 years ago, and I was looking for work, I started working with the Latika Roy foundation. Like I said, it's one of India's leading organizations in disability. And very soon we were awarded the Sightsavers Funded Innovation Grant through which we were trying to take services closer to the communities for families who had disabled children. 60% of my region is mountainous. I mean, you can imagine it's the foothills of the Himalayas. So transport terrain real challenges. The other thing we really did as an organization was, we were instrumental to train different levels of personal in the health system from doctors to community health workers, to nurses, really to help them understand what typical development in children was all about. And also to pick off red flags for delays in development, deviation in development.
Dr. Shubha Nagesh:
What is the rationale behind the early intervention and what is the impact that early intervention could have on the quality of the life of the child and also his or her family? So disability research is the other thing which is starkly lacking in my region. So we also initiated implementation research in the foundation to inform our own practice. Where were we being effective? The parents find our services useful. Was there progress being made by the children around the developmental goals, et cetera. Like I said earlier, I was also a mentor with the global health mentorships program. So what I've tried to do is really to engage with, to inspire and encourage young emerging global health practitioners, both medical doctors and public health students towards a career which can bring together disability and global health. But this is now when I started 10 years ago for a long long time, I remained an outlier because mostly no one in my professional circles really understood what global health was.
Dr. Shubha Nagesh:
And when I tried to tell them that I was trying to bring together childhood disability and global health, there was usually this deafening silence in the room. And I must admit I've struggled, I've lost heart, and I've been plain miserable at times because I worked very hard to fit in, into disability networks as the lone global health professional and into global health networks as the only one who worked on disability, that too childhood disability. But it's been 10 years now, and how do I feel now? I feel like I'm a professional who has a unique set of skills who can contribute much to her cause. And I feel like my mountain is waiting and I must be on my way. So really associating with Sara, took this collaboration to another level. And I'm so happy that we are trying to put disability out there in the global health world in every possible way that we could.
Sara Rotenberg:
Yeah. And it's been an exciting journey, and a much needed collaboration, especially in the context of the COVID pandemic. Because a lot of this work in global health equity, really speaks to how we haven't really been able as public health leaders and also disabled people haven't been able to collaborate to ensure inclusion. And I think COVID-19 is really showing what happens when you don't consider these people with disabilities in pandemic preparedness. So for instance, internationally, we have seen evidence that people with disabilities are at higher risk of contracting SARS-Cov-2, because of various in-person care requirements, place of residence, such as a group home or a congregate setting, age, difficulty assuring to public health measures and other social determinants of health. Here in the UK, we've seen probably the most poignant example of adverse outcomes from COVID-19, where people with disabilities have made up 60% of COVID-19 deaths, but only make up 17% of the population.
Sara Rotenberg:
Various groups of people with disabilities are at particular risk, such as people with down syndrome who are at 5 to 10 times higher risk of mortality, or non-ambulatory people with multiple sclerosis, who have experienced a 25 times higher mortality. And despite these studies, there have been few countries who are prioritized people with disabilities made vaccination centers accessible, or ensured protections are sufficient for at-risk groups when reopening, which is only compounded these poor outcomes. So a lot of my work with Shubha has been looking at some of these inequities and trying to address it, because again this overlap doesn't really work. And aside from these adverse outcomes in mortality and morbidity, we've also seen significant social outcomes. In Canada, for instance, more people with disabilities have reported having their hours reduced being furloughed or losing jobs compared to non-disabled people. For many who have been exceptionally high risk, isolating in homes for the past year has been the only option to stay safe, even if it means giving up services like home care, a typical health care needs, physical therapy or employment for those who can't work from home.
Sara Rotenberg:
This period of prolonged isolation has been exceptionally challenging for many people with disabilities, mental health, especially as some places started opening up, just not in a safe and inclusive way. For me, personally, this has meant my family has adhered to strict social distancing and public health guidance since early March with no exception. We've rarely seen people outside our house to mitigate risk of infection. And even though these measures are unsustainable, they were the only option. And so fortunately in Canada, we've had access to the vaccine. We're all now fully vaccinated and can somewhat resume. But this isn’t the case for many people with disabilities around the world, either because they haven't been prioritized for the vaccine or accessibility considerations, haven't been in place for vaccination programs to make sure that people can access it.
Dr. Shubha Nagesh:
So, like I've said, we are in the Himalayan state of India. So access is any way difficult and utilization of services is any way poor. And this particularly holds good for children with disabilities. So for our children and their families in the pandemic, they have been differentially affected because of reduced access to routine health and intervention services because of higher risk of getting COVID and higher risk of outcomes from the virus. But also because of being left out of all the planning, when this lockdown was declared as an emergency in India. So a historically marginalized community was again at risk of being left out completely. And that's exactly what happened. So challenges emerging from the pandemic included isolation, being cut off from services, such as our organizations being cut off from caregivers, being cut off from all the allied health professionals who would visit them at home or in the intervention centers. Whether they were physiotherapists, speech and language pathologists, occupational therapists, et cetera.
Dr. Shubha Nagesh:
So tele-health, which we have never imagined in the last 25 years since we've existed, was now becoming possible to use for physical therapy or speech therapy. In fact, it became the main mode of contact with our families. Parents did all the heavy lifting during the lockdown, and they became different kinds of therapists for their children. And this was an addition to shouldering all the other responsibilities. So you can imagine the amount of stress, the amount of pressure that these families were under, what somehow for them, that daily phone call from the Latika Roy Foundation or that weekly video call with our staff, really became a helpline. And many many parents reported that their anxiety levels and their stress levels were really controlled because of this connection with us. Outside our organization, everyone with disabilities was affected, but it was the women with disabilities who have been subject to more neglect, abuse, violence, and isolation.
Dr. Shubha Nagesh:
Like, you know, one of the strictest lockdowns in the world was imposed in India. So both women with, and without disabilities faced serious problems during this pandemic, a report by Rising Flame and by Sightsavers in 2020, indicated that 75 out of the 82 women who participated in the study had struggled with accessing either information, physical spaces, communication, digital spaces, health services, food, and other essentials. Women were subject to more than the usual neglect, abuse and violence, both sexual and otherwise. And these are women who have been historically neglected by both the disability landscape and the feminist landscape. So things just got really bad for them.
Dr. Shubha Nagesh:
And one of the things that also happened was the digital divide. It widened. It made learning very difficult for our kids with disabilities who were going to mainstream schools because none of the classes were accessible. And a lot of our children live below the poverty line anyway, so there was no way they could access online classes at all. This is the part, none of the pandemic advisories or information that was being provided was accessible. And people with disabilities were not prioritized for the vaccine, anywhere in the country, no vaccination center till today has been deliberately made accessible. In fact, in our organization, our legal consultant had to fight tooth and nail with the district administration to try and get the vaccine to our own organization. And finally, last month we got 29 young adults with disabilities vaccinated on our premises. So having said all of the above, the pandemic has made the world smaller for everyone, but more so for our kids and their families. But also because of technology, I feel like we could connect with many more families who are lost to follow up.
Sara Rotenberg:
Definitely, these challenges have been amplified in the pandemic while providing spaces online that are perhaps more accessible with captions, and no barriers to physical spaces have opened up opportunity. Given these spaces require resources. It has been an inequitable amount of access for certain people with disabilities. But given all these challenges, it's definitely important as we move forward, and continuing to respond to the pandemic, that we recognize the importance of translating equitable access policies for people with disabilities, which is something Shubha and I are quite interested in. I previously have worked for the Coalition for Epidemic Preparedness Innovation or CEPI on their foundational, equitable access policy to ensure that vaccines were available when and where they're most needed in the event of an epidemic. After working there in 2018, I've recently become interested in thinking about what this looks like in distributing vaccines at sub national levels.
Sara Rotenberg:
And since November, I've been advocating for and with other advocates with disabilities to prioritize people with disabilities for the COVID-19 vaccine in my home province of Ontario and also around the world. A lot of this has been sending emails to officials, writing reports and articles and talking to people to raise awareness about the disproportionate impacts the pandemic has had on our community. But most recently it's resulted in developing a framework on what accessible testing and vaccination looks like for people with disabilities.
Sara Rotenberg:
To date, we've used this to measure how Ontario is doing across 18 key accessibility dimension on publicly available accessibility information. What we've found is that there's limited information and likely limited considerations that pose additional barriers to people with disabilities, even when they're prioritized for vaccination. And so without concerted efforts and political will, we're unlikely to see any changes for this at-risk population. In other ways, despite the need to have the vaccine because of ways it can protect individuals in other ways, public health measures have failed. And despite finding this information and also seeing just the devastating impacts the pandemic has had on people with disabilities, a silver lining of this has been collaborating with other people with disabilities at home and allies, including other Rhodes Scholars, like Matthew Downer and Steini Brown. And of course, Atlantic fellows like Shubha
Dr. Shubha Nagesh:
Thank you. So for us as the only public health person in an organization of 120 people, I became the voice of the pandemic. So I was sharing all these public health advisories with my staff almost on a weekly basis so that they understand the seriousness of this pandemic. And everybody wears a mask and maintains that spatial distance. And it's really difficult for our children to wear masks because some of them drool, some of them have other behavioral issues. So that became a bit of a challenge and social distancing or spatial distancing becomes impossible when a child is completely dependent on his parents or his or her caregivers for all the care that they need. So that was from the point of view of the organization itself, but not the part like Sara said. Yes, we worked on an op-ed, which was relating to translating equitable access for people with disabilities.
Dr. Shubha Nagesh:
And we really addressed five key ways to make sure that accessibilities, would be considered in the rollout of vaccines. For example, vaccination locations must be accessible. They must be in accordance with the local laws. An accessible facility should include everything from the physical space to the facilities and environment. And if the focus could shift to accessible locations, close to the community, or at that door step, even more people with disabilities could receive their vaccine.
Dr. Shubha Nagesh:
Within countries and regions, distribution and administration sites should be at easy to reach locations, which are again, universally accessible, located close to accessible transport, and are easy to book. Vaccine drives could deliberately target people with disabilities along with their families, caregivers, therapists, teachers, and medical staff to support them. Countries must make COVID-19 resources, including information advisories and public announcements accessible for everyone. So easy to read in multiple formats, such as large-font videos with captions, sign-language interpretation, and braille. And finally staff training is key to shifting attitudes towards disability. It was important that staff will vaccinate people with disabilities should be trained and educated in advanced to the best extent possible, for example, training and communication and accommodation. So that the experience is inclusive and accessible to disabled people.
Sara Rotenberg:
And these are definitely key areas for accessibility, but as we think about some of the actions that have led to the need for this advocacy, I think one of the most important ones is the disability leadership vacuum. I think a lot of the barriers to inclusion or appropriate consideration of how to protect people with disabilities in this pandemic has stemmed from a lack of disability inclusive leadership and representation. New policy makers or people in public health have disabilities themselves. And so I think while people understand the importance or the legal obligation of disability inclusion, they don't know how to implement it in practice or champion it, because it seems like an un-relatable problem. Yet, a lot of people don't realise that disability actually impacts 15% of the world's population. And so it's very important that, as we think about fostering inclusive recoveries, as we think about how can we build back better that we really center people with disabilities within this plan.
Dr. Shubha Nagesh:
Yeah. So in India, disability advocates, activists, experts were completely left out of the pandemic planning. So inclusion therefore was not a priority at all. All efforts were piecemealed, fragmented, and conducted mostly by civil society organizations, or by disability advocates themselves in their own local contexts. But I feel that disabled leaders are better equipped to negotiate health for their populations and to deliver better health outcomes for them. So what we really need is systems leadership. Leadership that involves working across sectors, working through all levels of the health system and also other allied systems like social welfare, et cetera. So that governance structures and laws are developed that mandate inclusion of people with disabilities, because unless structural changes are not legalized, no amount of goodwill and passion can make accessibility happen. And with this will come the mindset shift towards a positive mindset that creates acceptance towards neuro diversity, and a move towards making the environment accessible rather than fixing the person with disability.
Dr. Shubha Nagesh:
And this leads me on to the next topic, which is, do you think COVID has provided an opportunity to shift accessibility front and center of the COVID recovery plans? Or how can we ensure that this happens in future? This is not going to be the last crisis. We are going to have many more in future. We know that for sure. But as this crisis continues, one question looms large in front of all of us, how can we address the long standing systemic inequalities that this pandemic has laid bare for all of us? And perhaps the greatest confrontation is to comprehend that we have consciously or unconsciously ignored people with disabilities, not just in India, but globally. And unless we confront the failure of the privileged and the powerful groups, a fair world will not be possible. So while COVID-19 has created a human crisis of unprecedented scale, it also presents an opportunity to reimagine disability inclusion.
Dr. Shubha Nagesh:
Also for me, that is one other concern that keeps me awake at night. The dominance of the global norm in the universalizing and totalizing tendencies of work around disability, whether it's writing programming, policy, et cetera. And I feel that this has resulted in the marginalization of experiences from the Global South. So the experience of colonization and colonialism in the Global South was both disabling and devastating for the inhabitants. While the agenda of disability, pride and celebration in the Global North, I feel stands in stark contrast with the need to prevent mass impairments in the global south. So can we re-imagine the disability discourse in the aftermath of the pandemic and bring together the Global North and the Global South into a fair partnership, where both of us have a voice. Both of us have an opinion, and both of us have an idea about the way forward.
Sara Rotenberg:
I hope we can Shubha, maybe together we'll see. But yeah, I also think that going forward, what we've seen as a tremendous amount of political will to rapidly change human behavior and to fund for crisis and to sort of gather behind a cause. But we haven't seen that same sort of action on accessibility for people with disabilities. Yet, there's been opportunities such as the decade, UN decade for action, the UN convention on the rights of people with disabilities. And so the question really remains on how can we use this moment to really catalyze action on meaningful progress for people with disabilities?
Sara Rotenberg:
And I think that people during this period of time have really understood what it's like to be excluded, what it's like to have to be left in your home. And it doesn't map perfectly to a lot of the exclusion that people with disability face, but it should inspire us all to try and foster better inclusion, whether that be North to South people with disabilities and people without, but just greater inclusion as we returned to normal. Recently, there have been significant commitments on disability inclusion, including a recent world health assembly that seeks to integrate disability into health systems. But unless we do so with committed leadership from disabled people, without buy-in and the political will, that we've been able to see to really change our actions and behavior to COVID, I think we are going to see limited change in the future. And we need this political will and action to pave the way for an accessible recovery.
Dr. Shubha Nagesh:
Absolutely. And like my executive director says disability is not inability. In fact, it's an identity. It's the lived experience. And inclusion is no longer a choice to be made. In fact, it's the only way forward, and it's not about disabled people and sympathy or pity. Or disabled people being noble or inspiring. It's just about common sense. It's about human rights and it's about social justice. And the good news is that with intentionality and investment, we can get this stung together. In fact, the future depends on it.
Dr. Shubha Nagesh:
So in conclusion to this series, I would like to share with you that even after decades of disability rights, people with disabilities continue to face significant barriers to social inclusion, to equal opportunity, to health and safety, and to financial security. And while some of the most visible efforts to continue the fight, focus on changing ableist habits and attitudes, the most harmful and persistent barriers that disabled people face are still distinctly structural.
Dr. Shubha Nagesh:
So unless progress is made to remove structural barriers, we can't hope to achieve much. Also, it's going to take each one of us to make this happen. We have to start with where we are and what we can influence. And we each have to do our bit to advance this shared vision of an inclusive and fair world. For then we can build a world that we imagine. And when it comes to accessibility in health, the next step is about creating a holistic experience for someone who lives with a disability. And to create an environment where they can reach their own potential. With that, I would thank you so much for joining us for another Rhodes Ahead. You can find more thought leadership content on the Rhodes Trust YouTube channel and Rhodes Connect. Thank you.