Dr. Maya Sabatello — Precision Medicine: Ethics, Politics and Culture Project Columbia University 

Maya Sabatello in United Nations' CRPD meeting
Maya Sabatello and others brainstorming in the development of the United Nations’ CRPD

Maya Sabatello is an associate professor of clinical bioethics at Columbia University, and a long time disability rights advocate. ABILITY’s Chet Cooper caught up with her to discuss disability advocacy work.

Chet Cooper: What motivated you to get into this field?

Maya Sabatello: I did not grow up in the United States and I was pretty young when, with no internet connection at the time when the ADA was adopted. So I wasn’t really aware of the Americans with Disabilities Act at the time, but I think I will never forget the minute that the light bowl regarding discrimination and exclusion of people with disabilities turned on in my brain. I was about 10 years old, pretty young again, and went with a friend to a playground near my home. And it was the largest playground in our neighborhood with a nice sort of structure with slides and two sandboxes surrounded by benches. It was still pretty, fairly small area overall, but it was the fancier one. And so we entered the playground with excitement and I kind of still remember myself coming in, sort of running in, and then stopping.

I remember the abrupt stop to that entrance, literally, both physically and mentally. What happened was that in one of the sandboxes was a group of children with disabilities who were accompanied by what, by who seemed to be kindergarten teachers of some sort. And what I very vividly remember is the thoughts that crossed my mind, which were 1) Why are none of the other kids playing in that sandbox? And 2) The contrast between the loud laughter and cries from that sandbox on the one hand, and the quiet of the stares of the parents of the other kids and the children themselves, on the other hand. And the next thing I remember is me and my friend walking to this outcast sandbox, and we spent the next hour and a half or so with the kids, which later on led me to volunteer with what turned out to be a residential home for children with disabilities.

Most of them were abandoned by their parents at birth, regardless of the type of disability. And it was quite an eye opening experience working with them for quite a few years after that. So that was my, the beginning of my journey with the disability community. And later on, when I first heard about the Americans with Disabilities Act, and at the time it was considered to be the most comprehensive disability law in the world. I remember thinking, well, maybe there’s hope for more inclusion and a better future. So that was the first reaction to it.

Cooper: Can you talk about your background?

Maya Sabatello

Sabatello: I’m coming from a legal background, but I’m very interdisciplinary and I have a split because from a legal policy perspective, the ADA has clearly made a huge difference, not only nationally, but also internationally. Again, when it was adopted, it was considered to be the first, most comprehensive law in the world to focus on the equal rights of people with disabilities. It was no doubt, a groundbreaking legal document. And there’s no question about it. And learning about the disability movement behind it and the visibility and the work of those who lead the way is really an achievement on its own. So when we started negotiating the convention on the UN Convention on the Rights of People with Disabilities, you know, first discussions early, sort of late 2002, and then certainly when we entered 2003, there was, there were clearly lessons that we’ve thought, we had in mind when we thought about what disability law should look like for people with disability, with disabilities in the United States and elsewhere.

And so we were informed by lessons from the American disability rights movement and the importance of working together and bringing visibility to a community that is so often shunned away. And naturally the ADA was a part of the discussion. At the time there were 45 States if I recall correctly that actually had any disability law in place. So that was one of the laws that were considered, and it clearly had impacted some of the provisions of the CRPD in terms of how we think about some issues that need to be included. For example, you know, issues such as accessibility and reasonable accommodations are legal provisions that were not necessarily known in many countries in the world. And they’re now included very clearly in international human rights law. So clearly it had a legal impact that is important to recognize. And it created a movement and inspiration.

check this out

 But I also think that the ADA has limitations. One is in its scope. It definitely today falls short in its comprehensiveness, especially if you look at it compared to the Convention on the Rights of People with Disabilities, it is not at the same level of inclusion. It does not include, it does not include provisions that will into account the lifespan and in all aspects of life. And of course it falls short in particularly with regards to implementation. One of the areas that I’m particularly interested in is the context of healthcare. And, and this is again where you can see the split. On the one hand, I think that many clinicians are at least aware of the Americans with Disabilities Act and they are aware that it exists.

However in practice, if you look into studies that looked at accessibility of health clinics, we know that they’re still often inaccessible. And it’s not only that the buildings and the internal design are inaccessible for people with disabilities, but also the medical equipment is inaccessible for people with disabilities. So even the ability of getting proper medical checkups is limited. And we know that studies show that even the clinicians and even hospital managers are unaware of what sort of accessibility measures actually exist or what equipment might be useful, or what are their responsibilities to ensure accessibility for people with disabilities. So, so these are definitely issues that are not handled well or sufficiently well under the ADA. And on top of that, we have the issue of stigma and biases against people with disabilities, both explicit and implicit, and they are alive and kicking.

Cooper: COVID-19…

Sabatello: Yes, we can clearly see it in the recent events of the COVID-19, where we saw it in the context of rationing debates about who is included in those programs and who isn’t or might not be but also beyond it, if we look broadly at the disability community, and I’m not making a definition of who is included, but as a group, people with disabilities comprise the largest healthy spirits group in the United States and around the world. This is a large community. It’s about 20 to 25% of the world’s population. We talk about 26% of the U S adults. And this is a community that really falls behind in every aspect of social determinants of health, from poverty, higher, higher rates of poverty, they are less likely to obtain a higher education. They do not often have food, housing and employment security.

They often don’t have employment-based health insurance. So there are all these issues that are really tremendously impactful on the health outcomes of people with disabilities. And then if you add to that double marginalization of people with disabilities from racial and ethnic minorities groups, in particular, Black and African Americans, Latinx, and indigenous populations, that they really have a double burden here that the ADA does not cover. It does not fully address and is unlikely to be sufficient unless we’re going to make more changes. So just as an example, even if where we’re at and where we’re heading. And I think, you know, we’re currently clearly in a place where people with disabilities already experienced significant health disparities. But I think that my worry is that these gaps are not, are only going to grow if we’re not going to be taking care of them right away and now. My own research focuses on the area of precision medicine research, which is a newly emerging approach to healthcare that is hoped to provide better prevention, diagnosis, and treatment options to individuals that are tailored to individuals, biological or slash genetic makeup, environmental factors that affect that individual and lifestyle choices. Now this type of research has a lot of potential in terms of identifying better treatments for certain prevalent diseases, such as cancer. So people with disabilities could have arguably benefited from that type of knowledge, but we’ve done a study with almost 1400 people with disabilities in the country and ask them about their thoughts about it. And, you know, an overwhelming majority of them stated that they would be interested in participating in precision medicine research. But we also found that they experienced tremendous number of barriers for such participation, again, from inaccessibility of clinics and healthcare facilities, transportation issues in accessibility of information, challenges in communication with health professionals. And it shrunk. All 40% of our sample actually stated that they don’t think that researchers and healthcare providers have the knowledge about the needs of people with disabilities. So these are gaps that the ADA does not fully cover. And even if it has some provisions they’re not being implemented.

Cooper:  How do you think things can change?

Sabatello: I think the most important thing that we need to do is to change attitudes. That is we have plenty of technology. We have plenty of other solutions. And as a society, we have, I think, the capacity to identify more and more solutions as the needs arise. But we have to start admitting that there is a problem and we have to start, as a society, trying to think how we can fix that problem. And the problem is not people with disabilities. The problem is that we need to self reflect on our biases. We have to self, to reconsider why we have so many biases and really try to address them. I think that one of the experiences of has been most influential on me was during the negotiations of the CRPD when you entered a room and the majority was of people with disabilities.

check this out

And not only that, it was a majority of people with disabilities, but it was people with disabilities, with various types of supports, assistance, different forms of communication, everything in between, and everyone did amazingly well. And that picture, that realization is something that I think every clinician, every policy maker, every educator should be able to see and experience because that’s that one moment that you say we are one society, we’re diverse, and we can, we can all be together without discrimination and without exclusion. So I think that as a community, that’s the message we have to bring in. We have to engage with as many stakeholders that we can across different areas of life, across different institutions, and really try to strike those partnerships where people without disabilities they’re our partners, and they’re a part of society, the societal fabric, in the same way that people with disabilities are. We’ve got to strike those partnerships and change the attitudes because I think once we’ll be willing to be there, we’ll be able to find every solution that we need.

So one of the things that’s particularly important at the moment is for people with disabilities to have a voice one way for doing it is to work with local and national organizations of people with disabilities. These are mostly organizations that are led by people with disabilities. So people with disabilities are the experts in what needs to be done and how things can be achieved. I have done several studies on disability and I have collaborated with various national organizations of people with disabilities, where ABILITY Corps and other national organizations have been important collaborators and partners throughout the process. For example, ABILITY has the entertainment website that brings together actors with disabilities to the entertainment industry. It’s a remarkable way of increasing visibility. When we see people, we know they exist. When they’re not there, we forget them. So it’s a great way of increasing their inclusion in the economic market. ABILITY Corps also has the job awareness program where it matches between people with disabilities and employers. Again, another amazing way of creating connections. But I think we can expand on that. And I think that national organizations in this country and with disabilities should really try to strike partnerships with as many stakeholders as possible across areas of education, health, policy, employment, everything that makes life complete. 

Maya Sabatello, LLB, PhD

Associate Professor of Medical Sciences (in Medicine)
Center for Precision Medicine and Genomics, Department of Medicine
Associate Professor of Medical Sciences (in Medical Humanities and Ethics)
Division of Ethics, Department of Medical Humanities and Ethics
Co-Director, Precision Medicine: Ethics, Politics and Culture Project
Columbia University

sharing is caring

we did our part - now do yours and share

like a good neighbor, share

Related Articles: