Episode 44: Ken Sutha

In this episode, Dr. Peter Poullos interviews Dr. Ken Sutha. In addition to his work as a pediatric nephrologist, Dr. Sutha works closely with one our hosts, Dr. Poullos in the Stanford Medicine Alliance for Disability Inclusion & Equity.  Dr. Sutha discusses his personal journey with disability, the path that led him to pediatric nephrology, and the work he’s done with the Stanford Medicine ADIE. 

Transcript

Pete Poullos:

Doctors with disabilities exist in small but impactful numbers. How do they navigate their journey? What are the challenges? What are the benefits to patients and to their peers? And what can we learn from their experiences? Join us as we explore the stories of doctors, PAs, nurses, OTs, PTs, pharmacists, dentists, and other health professionals with disabilities. We'll also be interviewing the researchers and policymakers that drive medicine forward towards real equity and inclusion. I am Peter Poullos, and I am thrilled to bring you the Docs with Disabilities Podcast.

Sofia Schlozman:

Hello and welcome back to the Docs with Disabilities podcast. In this episode, we are very excited to be joined by Dr. Ken Sutha. In addition to his work as a pediatric nephrologist, Dr. Sutha works closely with one our hosts, Dr. Peter Poullos, in the Stanford Medicine Alliance for Disability Inclusion & Equity. This group, which aims to improve disability rights in healthcare, was previously known as the Stanford Medicine Abilities Coalition, or SMAC, as you will hear it referred to in this episode. Listen or read along as Dr. Sutha and Dr. Poullos discuss Dr. Sutha’s personal journey with disability, the path that led him to pediatric nephrology, and the work he’s done with the Stanford Medicine ADIE. We begin with an introduction from Dr. Sutha.

Ken Sutha:

Thank you so much for having me. I'm very happy to be here. Big fan of the podcast. My name is Ken Sutha. You may have introduced me already, but I'm a pediatric nephrologist here at Stanford at Lucille Packard Children's Hospital. What that means of course, is that I'm a pediatrician first, but I take care of kids with all kinds of kidney disease, so all the way from newborns up to young adults, and they can have all different kinds of problems with their kidneys from high blood pressure, abnormal blood or protein in their urine, to more severe things like autoimmune diseases, or even being born without functioning kidneys requiring dialysis and eventually a kidney transplant.

Pete Poullos:

And tell me how your own personal journey intertwines with your professional roles.

Ken Sutha:

Sure. So in addition to being a nephrologist, I also have kidney disease myself. I was diagnosed with kidney disease when I was about 10 years old at a routine doctor's appointment. They found out that I had protein in my urine, and this is not like a, a totally uncommon thing to happen. It’s something called nephrotic syndrome. Many times kids with nephrotic syndrome outgrow it and go on to, to have normal kidney function. However, that wasn't the case for me. I didn't respond to the normal course of treatments that we use for nephrotic syndrome, so I had a biopsy which showed that I had something called FSGS, Focal segmental glomerulosclerosis, which is basically a fancy way of saying that there's scarring of the kidneys that was leading to  the protein in my urine.

 

They were able to put me on some medications that could slow the progression of my kidney disease and reduce the, the protein a little bit, but not completely eliminate it. So by the time I was graduating from college I knew I would need a transplant or to go on dialysis in order to survive. Thankfully at the age of 24, I was able to receive a living donor transplant from my dad before having to start dialysis. And because of that I was able to finish my medical training, eventually went on to become a pediatric nephrologist and all of that in terms of how my own experiences influenced my decision to go into nephrology I get asked this question a lot. I don't think, at least in my mind, it wasn't a direct one to one correlation. I think that it, it definitely influenced the ways that I thought about, healthcare and for sure when I was in school then when things related to the kidney came up, it definitely peaked my attention. But I think it was much more, my interest in science and the way that science can be applied to medicine that brought me into the field of medicine. And of course, I'm privileged to come from a family with several other physicians as well. And I think it's been, it's been found time and again, that kind of influence has a big role as well. But eventually once I did enter the field of medicine for sure my experience after having my kidney transplant and has as being a patient really did shape my decision to go into nephrology.

I think first, first of all after my transplant, I started volunteering at a camp for kids with different kinds of kidney disease and different kinds of transplant and that experience really shaped my interest in wanting to be a pediatrician seeing  the impact that transplants had on kids' lives being able to allow them to live the lives that we want all of them to be able to do running around having fun with friends and just being normal children. And then once I got into pediatrics, being able to see the wide variety of things that nephrologists do from the other side, from the provider side, both taking care of patients, inpatient and outpatient in acute and intensive care kind of settings. I think that's really what sealed the deal for me.

Pete Poullos:

Are there any other nephrologists in your family?

Ken Sutha:

There are no other nephrologists in my family. My mother is a radiation oncologist and I have an aunt that's an allergy immunology doctor.

Pete Poullos:

Do you like electrolytes?

Ken Sutha:

I do like electrolytes. I find them super interesting. And <laugh>, like I said, when I was, when I was in college, I was really drawn to like the science of things. And so like really my first cell biology class, I was super fascinated with the way that transporters and ion channels worked. And that led me to my first experiences in the research lab and kind of understanding kidney physiology from that standpoint.

Pete Poullos:

Tell me about your decision to become not just an MD, but an MD-PhD.

Ken Sutha:

Sure. So, yeah, as I mentioned I really got hooked to the, the basic biology side of things with my first, my first biology class as a freshman that led directly to my, my experiences being able to be part of a research program and joining a lab. And again, I think the kind of the influences of the people that were around me, the privileges that I had were very instrumental in shaping my career path. I joined the lab of somebody who was an MD-PhD and even though he only did basic science research in a lab and didn't have any more clinical responsibilities. I learned about what the advantages of being a physician scientist and having both the medical and the, the basic science phd training could have no matter whether or not you take the classical path of doing some sort of hybrid of research and clinical care, or if you did full-time clinical care or full-time lab research there are ways in which the knowledge that you have and the way that you think about problems and disease are shaped and changed by those experiences.

Pete Poullos:

Yeah. I feel like the MD-PhD is a very strong predictor of people going into private practice after radiology

Ken Sutha:

<laugh>, I have known a couple of people that have taken that path, but I no matter what I end up doing I feel that it was a worthwhile experience in kind of like the ways that I’ve learned to think about things and approach problems.

Pete Poullos:

So I caught to you in a little ableism there when you said so these kids can run around like normal children.

Ken Sutha:

That's right. Yeah. That's, that's for sure. I, there's definitely a lot of internalized ableism that's kind of built into the way that I think about the world. Growing up, able bodied and, not having some of the, the experiences that those with physical disabilities or sensory disabilities may have. And that's definitely something that I’ve learned to grapple with and to understand my own internalized ableism and how that, how many of us and I think probably all of us really still have, even as a part of the disability community, still have to continue to work on that.

Pete Poullos:

I mean, it's baked into our vocabulary I catch myself all the time saying things like, you know, lame, but I think these sort of terms are becoming less and less acceptable with the younger generations, which is good.

Ken Sutha:

But there's, there's still all, so many like idioms that we use just like an everyday language that have these kinds of ideas baked into them. And so it does take a lot of intentionality to recognize when we're using them, and humility to be able to accept when we're called out out for them.

Pete Poullos:

You and I have been on quite the journey together. I mean, you were there at the very first SMAC event and you've made my partner this whole time, so grateful for all your help. I feel like SMAC in a lot of ways is my baby and I feel like you care about it just as much as I do. And I like trust your judgment and your representation. Do you want to talk about your journey to identifying as being disabled? 

Ken Sutha:

Yeah. Since joining SMAC, I, I’ve definitely learned a lot more about what it means to identify as disabled and the heterogeneity of disability. I think that, as well I’ve learned that even those with the same disability can have completely different experiences based on different privileges they may have, intersectional identities that they may carry as well. For example because chronic kidney disease has waxed and waned in the way that it affects me it's not static and it's also not static across individuals as well. So for example when I need a dialysis, the way that I experienced it is completely different than somebody else who has the exact same need for dialysis might be I was able to continue working full time because I had a lot of support and I had the resources to be able to do home dialysis whereas somebody else who also needs dialysis may have childcare needs that they have, or may not have the space to be able to do dialysis at home and so would need to go to in-center dialysis three or four times a week, and that has significant impacts on their ability to work resources that they may have access to and other things. And so I think that that same principle I think, applies across all kinds of disabilities. 

 

And so oftentimes I think we see that, I feel like sometimes my, my experiences lifted up as you know, oh, “Ken was on dialysis and had a transplant and has been since successful so, you know, why can't you?”, but that ignores so much of other things that are going on in the background, other lived experiences that people have. And so that has, I think that has also really impacted the way that I see my patients too in terms of the difficulties that they may have, whether it be like medication adherence or, whether or not they're able to make their appointments trying to, to understand the broader context of people's lived experiences and it's not just simp simply a black and white kind of issue. And I think related to that I think I’ve learned a lot of humility and as, as we discussed before that accepting that I'm gonna make mistakes and that I still have internalized ableism and that I, I can't speak for the other constituents of the disability community, because my experience as an individual with chronic kidney disease and chronic illness is completely different than yours with a spinal cord injury, which is completely different than somebody else who is neurodiverse or somebody else who has developmental or learning disability. And I I’ve had to learn to confront my own ableism when, when thinking about those other disabilities as well and in being a more visible, and vocal person within a disability community through my work with SMAC I’ve also learned that I have to pass the mic sometime and let other people speak for themselves because I don't have those perspectives. And sometimes when speaking on behalf of other people there's the possibility that I could do more harm than good. We've seen this within the LGBTQ community oftentimes just because I, or another individual, may be gay that doesn't mean that I am able to provide gender affirming care for our trans patients without having to do the work. I have to do the work to really educate myself and to make sure that I am that I know what I am talking about and what I'm doing to provide a supportive environment for trans patients. And I think that that the same goes for within the disability community as well, that I have to continually do the work to educate myself about how I can better support those with disabilities and experiences different than on my own.

Pete Poullos:

Ye and this is one of the reasons why I trust you is because you are doing the work and you are taking the time you educate yourself on the important issues. And we've gone through this journey together, which has been very cool, and it's just nice to see other people on this journey.

You and I have been discussing research projects that are outside the scope of nephrology and basic science. And how has that been for you? I mean, you probably, I would imagine didn't see yourself doing this kind of research even just a few years ago, right?

Ken Sutha:

Yeah. It's definitely a new area for me. And it's been a lot of learning and, but I think it's been extremely valuable experience and I think there are things that can be translated between both my basic science research experience and this more medical education or disability related research in terms of learning about ways of approaching the IRB, thinking about study design and different kinds of forms of data analysis quantitative versus qualitative versus mixed methods. And I think that there are definitely again, skills that can be translated and adapted between all of these different realms. 

It's been extremely valuable and a great experience to try to figure out ways that I can translate the things that I’ve learned and the skill sets that I have in basic science and applying them to more clinical or medical education disability-related research.

Sofia Schlozman:

In the next section, Dr. Sutha discusses how his own identities as a disabled, gay, and Asian man interact. Listen or read along as Dr. Sutha shares his experiences with this intersectionality.

Pete Poullos:

Talk to me about your intersectional identities.

Ken Sutha:

 So I am, I identify as an Asian American man I'm cisgender. I use he/him pronouns. I am queer. I identify as gay. I also identify as disabled. My journey into being able to identify with being disabled has, has really evolved particularly within the past couple of years. And I thank you and the work that you've done with SMAC for really helping me to kind of bring me along in that process. I’ve grown up with chronic kidney disease, I have always kind of thought of myself as a patient with kidney disease and at, at different times of my life as being chronically ill. The impact of my chronic kidney disease has waxed and waned over the course of my life in terms of how much it's impacted my ability to do other things in terms of how much of a role it played in my self-identifying, in my identity.

 

But I think that when I was introduced to SMAC and you and the work that's been done by MSDCI, our medical students here at Stanford that founded medical students with disability and chronic illness I started to think more broadly about what it meant to be disabled and about the shared journeys and experiences that are that many with different kinds of disabilities, sensory mobility cognitive disabilities, and other kinds of chronic illnesses may share in terms of our experiences with the healthcare system navigating the world in terms of the way that other people view us and may think about out what we can or cannot do based on our chronic illnesses or disease or disability. And so because of that, I now consider myself to be a part of the disability community and identify myself as being a disabled person even though that that impact of that disability does kind of change over time because I see that there's a collective power in, in working together and in this shared identity.

Pete Poullos:

What is it like at the intersection of queerness and disability?

Ken Sutha:

That is definitely an interesting question. I'm still learning very much about what other people have had to think about this and kind of like what that worldview is. I come again from a place of privilege having an invisible disability that not immediately evident to many other people. And so in the same way that in other spaces, those with invisible disabilities may not have to deal with ableism related to their disabilities. That's very much based within queer and gay communities.

 

There is, I think very much a sense of ableism within the, the LGBT and particularly gay communities. There can be in many spaces and emphasis on physical health strength and kind of this idealized male figure and disability, like physical disabilities, mobility disabilities kind of work counter to that that view. And so in, from what I’ve been learning from other queer disabled activists they encounter a lot of ableism in queer spaces, that can be both from overt ableism in terms of like the way that they are seen in terms of their sexuality, as being like viable sexual partners. But it can be also things in terms of accessibility of queer spaces so gay bars other kinds of event spaces, gay pride, parades things like that that may not have accessibility in mind when they're trying to develop and plan those events. And just like any other kind of intersectional kind of identities, the experiences of people that kind of exist where these two places, these two identities or, or multiple other identities kind of come together face many unique challenges, bn both sides from the queer side and from the disability side as well.

Pete Poullos:

Do you think that the AIDS epidemic had anything to do with this emphasis on physical perfection and health?

Ken Sutha:

I'm certain that it does, again, this is not my area of expertise, but in, in things that I’ve heard from other people I think that during the aids epidemic there was very much kind of this reaction to it that, you know, by being able to portray some sort of image of yourself as being like super fit and therefore “healthy” that would be able to distinguish yourself from those other individuals that were struggling with illness and the side effects that were coming from HIV diagnoses and other illnesses that may, or may not have gone along with that. I'm sure that the emphasis on the idealized male form kind of will definitely predate the aids epidemic, but I do suspect that that definitely does have play a role in kind of the way that we, as a gay community, kind of view athleticism and the male form.

Pete Poullos:

What about the intersection of being Asian and disabled?

Ken Sutha:

Sure. First of all, again, I speak for myself and not all Asian people. The Asian American identity is extremely heterogeneous. It encompasses people from all different parts of Asia with many diverse backgrounds, many religious backgrounds, many different kinds of socio-economic backgrounds, different lived experiences of when and how their families may have immigrated to the United States. But in my experience, I have found that there is ableism within Asian communities, in terms of it is difficult for Asian and Asian American families to talk about internal issues and problems and they oftentimes wanna project a more like idealized picture to the outside world. And so in that, in that same vein talking about struggles with chronic illness and disability and other disease can be very difficult and oftentimes people may want to sweep these kinds of things under the rug and not talk about them in a public way. And they think that, you know, this is a family problem, not something that we want to share with the rest of the world. I know specifically in the Asian communities that mental health is often a difficult topic for, for many people to discuss this is a difficult topic for, for many people obviously to, to be forthright and to disclose. But I do feel like within many minority communities and particularly within the Asian and Asian American communities, there is a lot of stigma that goes along with discussing mental health and other issues like that.

Pete Poullos:

Have you had any experience with the idea of karma that like people with disabilities must have done something to acquire that disability?

Ken Sutha:

Yeah. Not directly, but I know that there are some aspects of some of the Eastern religions that do incorporate that idea that, you know, that what's coming to you and your family is a reflection of kind of what has come before in previous cycles and therefore the works that you do in your life also are also, again, backwards reflection on your family. And so I have, I haven't experienced that personally, but I have heard of that idea that there can be stigma that's related to this, that people may feel that the struggles particularly related disability, that they are the result of some sort of generational thing, or something religiously related.

Sofia Schlozman:

The conversation now shifts to discuss Dr. Sutha and Dr. Poullos' work with SMAC, which has now been renamed to the Stanford Medicine ADIE. Listen or read along as Dr. Sutha discusses what he's learned while working with this group and what he hopes to continue working towards in the future.

Pete Poullos:

What do you think are the most gratifying projects that you've worked on with SMAC?

Ken Sutha:

So with SMAC I’ve really enjoyed being able to work with the students and the trainees. So, I don't know if I mentioned earlier, so during my training here at Stanford for, as a pediatric nephrology fellow I was also on dialysis for two of those three years. That was right before the time that I found out about SMAC I had a very good experience in that my program was extremely flexible and provided me with quite a bit of support during the time when I was on dialysis. That said, I know that's not the experience for many other people. And I’ve come to learn about difficulties that that people and particular trainees face when trying to navigate disability and chronic illness during their training, their medical training particularly those that are our house staff, our residents and fellows, because they oftentimes fall into this gray zone in between being a student and being an employee and people many times don't know what to do with them.

 

Oftentimes these trainees may be in smaller programs where the programs don't have as much experience with disability, just based on sheer volume of trainees that they see. And so each time that a different trainee comes in with different accommodation needs or disability they essentially have to reinvent the wheel and figure out how to make it make things work within the system. 

 

So with SMAC I’ve, I’ve really enjoyed being able to connect with current trainees with disabilities and chronic illness in being able to show them a path forward that there are people in the field of medicine that have been able to carve out successful careers, not only despite, but sometimes, because of their disabilities or chronic illness, because of the insights and the perspectives and viewpoints that they bring to medicine based on their own lived experiences. And being able to figure out new ways that we can help to support these vulnerable trainees by improving the system, I think has been, has been extremely rewarding.

 

One in particular, one of our residents had approached us about delays that she'd had in accessing accommodations. This resident essentially had developed a progressive neurological deficit and so needed to work out with her program accommodations to be able to continue being able to do her work as a resident. But because of delays in communication, not knowing, not having a clear pathway of who she was supposed to talk to in terms of accessing those accommodations, there were significant delays. Originally, she went to people within her program, and it wasn't escalated up to senior leadership in the program in a timely manner.  And then from that it eventually went to the Stanford-wide GME office which then got sent over to our HR department. As we've seen with many, people who’ve worked at our HR do not necessarily, even working in a hospital, don't necessarily know what the functions of a resident are and what accommodations they might need- compounded by the fact that our residents oftentimes have to work at multiple hospitals that bridge across institutions. And so each of those institutions have their own separate HR process. And so there was a lot of delay and difficulty in trying to figure out how to Institute those accommodations at the different levels, at the different institutions, as well. Even things as seemingly as simple as obtaining disabled parking or, or even parking that was closer to the hospital workspace than our  garage, which is like a 10 or 15 minute walk away, was extremely difficult for this for this resident. And so  it really just highlighted how many different levels of bureaucracy people have to deal with when starting to navigate a disability in healthcare.

 

And this is not a unique story, as well. That was the thing, the alarming thing is that this resident was extremely good at advocating for themselves but there are many times that others may not be able to speak up for whatever reason and may have fallen through the cracks and may have been forced out of their programs due to the difficulties and problems that they had and the fact that this resident was dealing with all this on top of all their patient care responsibilities. We've often said that that dealing with a disability or chronic illness itself is a full-time job add on to that the bureaucracy that you have to do, that you have to work within the system all just to do your job that you want to do of taking care of patients and learning and getting the training as a resident. It's unfathomable how much people have to struggle with.

Pete Poullos:

This sort of physical access, the lack of physical access keeps coming up again and again, with like lack of automatic door openers on bathrooms. I mean, they built the neuroscience center, which, you know, where they treat people with neurological diseases and there was no accessible bathroom in that whole building, the patients had to advocate for themselves to get them to put a door opener. In, you know, in our radiology department, they did not have any accessible restrooms, I had to ask for that. And the ones that are not motorized, the ones that are not, that one that they made accessible, like the doors are so heavy there's no way that they would meet code. I mean, even my 20-year-old volunteers who are completely able-bodied struggle to open them. And so I just think like it's just this persistent neglect of disabilities that manifest in so many different ways, and so I'm happy to be changing that, but we still, you know, we're still having people come to us saying that they just heard about us, you know, last week. And they're so glad that there's a group here for people with disabilities, but they wish they would've known about it two years ago when they were struggling even more. And so that kind of penetration as you know, has been like kind of difficult. 

 

So what are ways you think we can improve our, our visibility in the medical center so that people, know that they can come to us early on in their disability journey before things get more complicated or their situation deteriorates?

Ken Sutha:

Yeah, that's a difficult question. I, I feel like oftentimes people are just in their trenches and they're just, they're dealing with their work and they're dealing with trying to navigate the system with their disability. And so they don't have time to, to kind of recognize the, the resources that are around. So I think the best way is really to educate everybody at an early time, like when they're coming in to Stanford and to incorporate visibility for the organization in multiple different events like similar to the ones that we had during October for national disability employment awareness month hitting it from multiple different angles in terms of ways that people might be able to hear about the organization. I feel like even then we'll probably still miss a lot of people, but at least if we are able to get in front of the people that are in leadership so that they know to be able to direct people to us if needed that, so that they're bringing up SMAC with everybody, not just those that they perceive to have a disability because again, not everybody's going to disclose and sometimes people may not have a disability and may develop a disability kind of in the course of their time here at Stanford.

So again, making it available and known as a resource more broadly, I think will be the way to go. But again, it takes, it takes time. And like you mentioned before, kind of both a top down and a bottom-up approach in terms of winning over hearts and minds.

Pete Poullos:

What would you say have been the events that we've had that have been most impactful on you?

Ken Sutha:

There have been so many great events it’s, it's hard to pick one. The conferences, our disability conferences that we have are, have been extremely valuable. I think that we have, we've been really fortunate to have, outstanding speakers from a variety of different fields to be able to speak about their experiences with disability in healthcare. I think that's I have learned a lot from all these different people learning from their different perspectives and learning about the, the spectrum of ways that people approach their own disabilities and navigating the system. There's no one right way to be a healthcare provider with a disability. And I think that has really helped to open up my mind in terms of thinking about how different people experience the world because of their disability and their other intersectional identities.

 

 I’ve also really enjoyed the different speakers that we've, that we've had that have come in. One that sticks out in particular is Dr. Oluwaferanmi Okanlami. He came and spoke for grand rounds. This was in the pre-pandemic times. I really enjoyed being able to meet him in person beyond seeing him on Twitter and seeing his Twitter personality but be able to actually put a face to the name and to the, to the words that he was putting out. And I, I think since the pandemic being able to connect virtually with many other people many colleagues across different institutions many of the different panels that we've had. The Stanford and medicine alumni panel that we had being able to connect with alumni that have been able to navigate careers with their disabilities and learning about what their journeys have been like, that's been really-those were really great events as well. 

Sofia Schlozman:

In the next section, Dr. Poullos and Dr. Sutha share what they've done to try to understand the challenges faced by disabled patients and healthcare providers and their own thoughts on how make medicine a more inclusive space.

Pete Poullos:

We did our huge justice equity and abilities survey, but also, we've taken smaller, surveys such as, and when we created that, question box for the disability town hall with the Dean and CEO, and so we have been privileged to get a lot of insight, not only into the challenges of our colleagues, but also into the challenge of our patients. What do you think the biggest challenges are for healthcare providers in medicine?

Ken Sutha:

I think one of the biggest things is just again, tackling that ableism that's pervasive not just through medicine, but through, throughout, throughout society as a whole as we had, as we discussed at the beginning. There's so many, so many ableist things that are kind of just baked into the way that we think about things and the way that we talk about things. And that is the case for, for medical providers as well. I think it was a recent study from Dr. Iezzoni at Harvard that was looking at the attitudes of healthcare providers towards those with disabilities, and I believe it was something like 70 or 80% of healthcare providers in that survey believe that those with, with severe disabilities had lower quality of life than those without disabilities.

And I think that that goes counter to what we know as the disability paradox that when we ask those with disabilities, how they would rate their own life, that they, their quality of life self-reported is actually much better than what an outside observer may say. And so being able to change healthcare providers perspectives about that, and to understand that those with disabilities and chronic illnesses can lead full and fulfilling lives with satisfying quality of life I think is important because that, that really shapes, like the things in terms of the care that we offer to our patients and the way that we approach them. And until we're able to address that on a, on a larger scale, I think it, it will be difficult to, to really get gain traction in a, a lot of the, the smaller initiatives that we have in terms of improving access to, to medical care and other barriers that are faced by those with disabilities,

Pete Poullos:

But on a more granular level, like how do we change the culture?

Ken Sutha:

 I think increasing visibility and awareness is, is a huge step. I think being able to have things like this podcast, organizations like SMAC, work that people like you are doing in terms of raising the visibility of, of those with disabilities is, is a great first step. I think it, it obviously can't stop there. But I think that, by having more people in the healthcare field with a range of different disabilities, I think that will start to slowly change people's perspectives about what, what people with disabilities are like what they're capable of, when you see, see somebody else who has a different identity than you. You, I think that it  is possible to learn more about what their life is like and to know that they exist. And I think that that alone is a meaningful first step to changing people's perspectives and perceptions about people living with disabilities.

 

Pete Poullos:

You know, in our work, we talk a, a lot about a potential leadership structure for disability and like the need for both a top-down approach and a bottom-up approach? How do the top-down approach with increased representation of disabled people in leadership versus a bottom-up approach? How do those complement each other?

Ken Sutha:

I think it needs to happen from both sides. As you mentioned, I think that, like you said, I think that they're complimentary. It is difficult to change the power structures overnight. We see this with the inclusion of underrepresented minorities and women in, in leadership roles. We know that both of those groups are there's attrition in terms of like the, as you move up the food chain of  leadership from like trainees and to like department chairs, to deans, that it, it becomes increasingly older, white male. And so I think although we recognize that these are things that need to be addressed it has been slow to change but I think that things are moving in that direction and think in parallel think, I think that things that can also happen in terms of disabled people as well.

 

I think part of it again, is getting people to think more broadly about disability. When you recognize that illnesses in injury disability are things that can affect almost anybody especially now after the time of COVID that many people may be vulnerable or may become vulnerable, at some point in the future that by addressing this issues not just for yourself, but for everybody else you're really improving the state for everybody. And so if we recognize that my experience we with chronic kidney disease has parallels with your experience with spinal cord injury and that by being able to improve the accessibility for you that's really improving the overall environment of the world for myself and everybody else around me as well.

Pete Poullos:

How has COVID affected you personally with your kidney transplant and immune suppression?

Ken Sutha:

Yeah, so it it's definitely had a huge impact on me. So during, during the, the early times of COVID in particular, when, when we didn't know about how it would affect people, because I'm immune suppressed from my kidney transplant, I pretty much had to stay home. I was able to continue doing some virtual work through telehealth and working on things related to my research at home. But for several months, I essentially just never–even beyond when the official lockdown ended–I still wasn't leaving my house. 

 

I'm again, very fortunate. I have a roommate who was able to go out and do grocery shopping, so I didn't starve. But even after the vaccine came out I was of course, very excited to get the vaccine, like many people but that excitement quickly turned to, uncertainty, as I found out that I didn't have any response to the antibody or to the, to the vaccine. I didn't develop any antibodies. I was enrolled in a study that looked specifically at the immune response to the vaccines in immunosuppress people, particularly transplant patients. And it was found that after the initial two dose series that probably about 50% of immunosuppress people with transplants didn't form an adequate immune response and didn't have antibodies. And that was the case for me, even after receiving a third dose I still didn't have antibodies. And so again, being able to go out and go to work but also trying to not be at home all the time, trying to have a social life. I had to be very cognizant of my increased risk of getting COVID. Again, thankfully in the bay area, rates were always low. People very much took vaccination and masking very seriously. So, I felt a little bit more comfortable going out while continuing to wear a mask at all times when I was indoors and trying to avoid larger crowds. Even now as things are starting to change again with different variants, the Delta and the Omicron variant there's certainly this large amount of uncertainty that I face in terms of like what degree of protection I have and will things ever be able to go back to some sort of semblance of how things were before in terms of being able to interact and live in the world.

Pete Poullos:

So does the fact that you didn't make antibodies mean that you didn't have any response to the vaccine or are there other sort of unmeasurable benefits?

Ken Sutha:

Yes. So in some research studies, they've also looked at cellular immunity against the vaccine particularly T-cell response. And that was not tested in the specific study that I was a part of and is not a part of the routine medical care. So I never had that test. So it was possible that I could have had some sort of cell protection in the absence of antibody protection. Since that time I’ve actually received a fourth dose which is essentially now a booster after my initial three dose primary series as an immunosuppressed person. And finally, I found out that I did now have antibodies, but again, it's not clear cut how long that protection will last, whether or not I have sufficient quality of antibodies to neutralize the COVID virus.

 

So I, even with that knowledge, I still need to try to protect myself and essentially behave as if I'm not vaccinated. That's the advice that we give all of our immunosuppress patients and that's been given more broadly is because we still don't know enough about the response of people with, with immunosuppression to the COVID vaccines, because they, again, they are new and we know that immunosuppress people have decreased responses to other kinds of vaccines, whether it be flu, tetanus, etc. cetera that even if I do have some sort of detectable response that it's not 100% assured that it's going to be protective. So, I'm still going to take measures to protect myself.

Pete Poullos:

As a last question, I'd like you to offer some advice to any trainees out there who might be listening to the podcast.

Ken Sutha:

I think my main advice is really just to find community. I think that one of the great things about SMAC for me has been being able to connect with people like minded individuals that we're passionate about disability and in healthcare and ways that we can improve the system. Likewise, I think that I’ve in the last like year or two, I’ve been really fortunate to connect with a lot of other doctors with transplants. I think that for a long time I felt like I was a zebra, and I was the only person kind of going through the experiences that I was having, in terms of navigating healthcare with immune suppression with the transplant, dealing with issues related to rejection and things like that.

 

But I think now that the age of social media and increased connectedness, I think it's easier to find other people who, maybe they don't have the exact same experience with you, but have experiences that will, that might resonate with yours. And there again, as we discussed before a kind of a collective power in being able to identify with those other people and to, to learn from their experiences and to commiserate that the road through medicine isn't always an easy one. And particularly, so for those with disabilities and chronic illness and difficult times will certainly come and there will be challenges and a lot of problems that you'll face. But I think that at least for me personally, being able to lean on others around me and being able to have that that community has been extremely helpful in helping me to weather the storm and to continue to push forward.

Pete Poullos:

Well, thanks so much, Ken, for joining us, it was such a pleasure talking with you. And although we talk pretty much every day in a more, in a more formal all setting. And I think that our listeners are going to get a lot out of this conversation and your insights. So thank you very much.

Ken Sutha:

It's a pleasure. Always great to, to have these more in-depth conversations with you. And as I mentioned before, a huge fan of the podcast I really enjoy listening to it. And the I'm so honored to, to be amongst  the outstanding lineup of guests that you've had.

Sofia Schlozman:

To our guest, Dr. Sutha, thank you so much for joining us for this episode. The Docs with Disabilities team is so appreciative of not only your openness and honesty when discussing your experiences in this episode, but the work you do every day to make Stanford and the medical field a more inclusive and welcoming environment for people with disabilities. To our audience, thank you so much for joining us for this episode. If you have not already done so, we encourage you to listen to our other interviews and subscribe to our podcast.

 

This podcast is a production of the Stanford Medicine Alliance for Disability Equity and Inclusion, the Stanford Department of Radiology, and the University of Michigan Medical School Department of Family Medicine MDisability initiative. The opinions on this podcast do not necessarily reflect those of their respective institutions. It is released under creative commons attribution, non-commercial, non-derivative license. This episode was produced by Pete Poullos, Lisa Meeks, Sofia Schlozman, with support from our audio editor Jacob Feeman.