As the director of web and mobile digital accessibility at HealthPartners, Steve Sawczyn leads a team dedicated to making health care simple and accessible for everyone. Steve, who is blind, has used his own experiences to inspire his team’s accessibility work and says he has learned to challenge what people say is impossible.
As the director of web and mobile digital accessibility at HealthPartners, Steve Sawczyn leads a team dedicated to making health care simple and accessible for everyone. Steve, who is blind, has used his own experiences to inspire his team’s accessibility work and says he has learned to challenge what people say is impossible.
Hosts: Kari Haley, MD, and Steven Jackson, MD
Guest: Steve Sawczyn
Steve and the web and mobile digital accessibility team can be reached at accessibility@healthpartners.com.
HealthPartners website: Off the Charts podcast
Got an idea? Have thoughts to share? We want to hear from you. Email us at offthecharts@healthpartners.com.
Kari Haley:
He is a rehab doctor from Chicago.
Steven Jackson:
She's an emergency medicine doctor from the Twin Cities.
Kari Haley:
Together we're examining the health equity emergency.
Steven Jackson:
Inviting voices for change without the cue cards.
Kari Haley:
I'm Dr. Kari Haley.
Steven Jackson:
I'm Dr. Steven Jackson.
Both, together:
And this is "Off the Charts."
Steven Jackson:
Hello and welcome to another episode of "Off the Charts," where we ask candid questions about what equity means in health care. And you're in for a treat today. Our guest is a thought leader and consultant in digital accessibility matters at HealthPartners and supervisor of the digital accessibility team. I want everybody to welcome Steve Sawczyn to our show.
Steve Sawczyn:
Well, thank you so much. It's great to be here.
Kari Haley:
Thanks so much for coming on the podcast, Steve. It's great that we are here chatting with you. I think my first opening thoughts would be maybe for you to tell us a little about yourself, one. And then two, tell us more about what this digital accessibility team is here at HealthPartners.
Steve Sawczyn:
Well, sure. I've been blind since birth, and I moved to Minnesota after accepting what was supposed to be a very short contract with Target. I was supposed to be here for just a few weeks, and that was about 14, 15 years ago now.
Kari Haley:
You're still here. We got you.
Steve Sawczyn:
And I'm very happy I chose the only state colder than the one I left. I moved from Maine to Minnesota, so I managed to find a colder state. And I've had an interesting career in accessibility. Growing up, I didn't realize accessibility was a thing. I figured that people with disabilities just had to find their own way, and that was the only way they could be successful in terms of technology. And eventually I realized that was of course not true, and I sort of drifted into teaching people who have disabilities, either blindness or other disabilities. And it was fascinating to me. I just learned a bunch of stuff. And from there I sort of gravitated into the more technical pieces of digital accessibility, mainly website accessibility, mobile app accessibility, because technology has really helped to allow people to overcome barriers in an incredible way.
And so that journey that I'm still on, has taken me from Maine to Minnesota. I've traveled to other countries, been to India for accessibility work. And it's just fascinating stuff. So digital accessibility team here at HealthPartners is the team that makes sure that our website and mobile app and other digital experiences are accessible. So that people with disabilities are able to engage with those experiences along with everyone else.
Steven Jackson:
You don't plan on moving to Antarctica, do you? Because you're on a trend of getting colder from one place to another.
Steve Sawczyn:
I don't plan on it, but you never say never. Anything is possible.
Steven Jackson:
I'm a rehab doctor. One of the populations of patients that I care for are those that have spinal cord injuries. And I learned early regarding labeling. For example, it's easy for a lot of people to say somebody with paraplegia, they're paraplegic, or somebody with tetraplegia, they're tetraplegic. And so we would love for you to speak on the intersectionality between disability and identity and how sometimes they're often very different. What are your thoughts on that?
Steve Sawczyn:
I think they are very different in that we tend to create a label and assume that constitutes a person's entire identity. And it is entirely possible and indeed probable that someone with a disability identifies in other ways beyond just their disability. The disability may be a secondary characteristic just as hair color might be a secondary characteristic. You could, for example, have a disability and identify as someone who is African American. You might be having a disability and also identify as part of the LGBTQ community. So the idea that disability constitutes the entire identity of a person is really challenging and also limiting I think, because if we think about someone with a disability strictly through the lens of that disability, we lose sight of the fact that they also are members of other communities. And are identified in different ways that may be more powerful to them or might resonate more with them and how they identify. And that's a thing we really should never lose sight of.
Steven Jackson:
Why do you think that is? Why do you think, I guess as a society or as a world we so easily slip into, I don't want to say highlighting, but definitely making a person's disability the personal focus or maybe the person that does not have a disability? How do you think we got there?
Steve Sawczyn:
I think we love labeling. I think we like to-
Steven Jackson:
Really?
Steve Sawczyn:
Yeah, I think we love to sort people and identify them and then that's it and move on from there. And I think we're all probably guilty of it to a degree, and the best we can do is our best to try to overcome that, to change that behavior. But I think on some level, it's natural even among people with disabilities. I try to be very sensitive to this, but I have a friend and former co-worker who is blind, is Black and is gay. And I asked him one time, how do you identify? Those are three very distinctive things. How do you prioritize that? Where do you start? And he said, "How do I identify?" He said, "I'm a dad." And I thought, wow, you have kids, too. And I didn't even think that this person might have a life beyond the three identities that I was trying in my head to prioritize.
Steven Jackson:
That's something.
Steve Sawczyn:
And to him, he's a dad and he loves being a dad and that's his thing. And everything else is secondary to that. And it was fascinating to me because I thought, oh man, I'm guilty of the same thing that I keep talking about. So I think it's human nature. I don't know why it is. But the other thing is I think there's this idea that someone with a disability has always had the disability. And that may not be the case. In my case, I've been blind since birth. But there are plenty of people who have only been blind for a short time or have had a disability for a short amount of time. So they identify maybe in a very different way because most of their lives have been crafted around other identities.
And this disability piece is new to them, possibly newer to them than it is to the person trying to identify it. And so for them, maybe that hasn't become a part of their identity yet. And so now we've done this thing where we're sort of forcing an identity, forcing them to identify in a particular way that maybe they're not ready to even identify as at this point. So why we do it? I don't know other than that, I think we just like to sort things into boxes and put labels on things. And this is sort of an offshoot of that.
Kari Haley:
Yeah, I think it can go very, very deep. But I think there's also just that really face value it's easier that way, to just be able to simplify a person down to one or two primary things that makes it easier for you sometimes. I feel like we do this in medicine quite a bit too. I try actively not to, but sometimes it's hard when in the ED it's like a super busy shift and we have 17 patients. And I 100% identify sometimes the patient as the person with belly pain, the person who's dizzy. I identify them by their chief complaint because that's how I need to do it to be able to sort through the 17 people I'm taking care of at one time. But based on your experiences, obviously it does happen, do you have experiences in health care where you feel that your disability has been the primary driver? Or where your passion lies in making health care accessible and making providers and those of us who are in health care understand better?
Steve Sawczyn:
Absolutely. I think in health care it's the biggest challenge. And frankly, one of the biggest problems that we face is that labeling or mislabeling happens very, very frequently. I remember a couple of years ago I went to the doctor, and my wife had come with me and the doctor turned to her and said, "Are you mom?" And I thought, wow. Now my understanding is she looks younger than I do. I was just assumed I would be there with my mother. I don't know. But a couple of weeks ago I went to another clinic and it was after a long day, and I probably did not respond the most appropriately when this happened. But I went by myself and the person checked me in and she said, "Well, do we have anyone with us today?" And I just felt like I was really being talked down to, and I said, "Well, I don't have anyone with me, do you?"
And she's like, "Well, you don't have to get so upset." And I said, "You don't have to ask the question. I've already checked in. There's no reason for you to even ask me this question if I have anyone with me." What do you care? I'm here. I'm on time. I've checked in. Why are we even having this conversation? You don't have a right to know that necessarily. Why do you presume that?
Steven Jackson:
Interesting.
Steve Sawczyn:
And I thought you wouldn't go to any other patient necessarily and be like, who is with you today? Do you have someone with you? Unless you had a reason to do that? And so I wound up being the one that was told, "Oh, you shouldn't be so upset." I'm like, wait a minute. That seems so strange to me. And why do we need to know that? So I think oftentimes what happens is that assumptions then get made, this person can't do this by themselves. This person must have a caregiver. Someone else must be here to fill out paperwork for this person. And rather than ask the person, do you need assistance? Whatever, the assumption is just made that, oh, this is what has to happen in this person's situation. And then the other part that happens sort of along with that is people will forget that, I think in many ways that the person deserves a certain amount of respect. For example, I'll have people come up and just grab me, no, no, come over this way. The chair is off to your left. Let me just grab a hold of you.
And that's not OK. It doesn't respect any sort of personal boundaries. Now if they've asked like, "Hey, is it OK if I show you where the chair is or let you know or whatever." That's one thing. But people grab my arm, my hand, my backpack strap, my cane. It's like the same people would not presume to do the same thing in public, I would hope not, to other people. And yet suddenly it magically becomes OK if they see this person has a disability, therefore I am now able to do this. So I think that's the other sort of offshoot of this is A, sort of the assumptions that get made. But then B, the reactions that people have that may not really be OK normally, but somehow magically seem OK because this person has a disability. So it's OK for me to touch them or to move them or to pick up their stuff and move it where it's more convenient for me or whatever it is.
And that's challenging. And I think to be fair to the medical folks, if you're in a situation where you need to prioritize and triage and kind of keep things moving, you don't necessarily have time to have all of those conversations and figure that stuff out. And that I'm sure creates a huge challenge as well. But yeah, I think in medical situations it's very challenging and I think it creates a barrier where people who have disabilities occasionally if not often will think, gosh, do I really want to go to the doctor? Is it worth it? What am I going to deal with when I get there? What kind of stress am I going to have on top of the stress I already have because I don't feel well or because I need some sort of care?
And that's what sort of got me into digital accessibility, is my daughter had a serious medical condition and she's doing great now. But for a while we weren't quite sure, and I was trying to pay a bill on a website, not ours. But I was trying to pay a bill and I couldn't do it. And I wound up having to call them and I waited on hold, and then they told me I should pay it on the website. And I said, "I couldn't. That's why I called." And they said, "Well, do you have someone at home who can help you with it?" And I said, "No, I don't." And I thought I should be with her. I shouldn't be doing any of this. This should be a simple process and it's not because it's not accessible for me. I should be focused on her care and on being with her, not on reverse engineering their system to figure out how to pay their bill that they won't let me pay by phone. This is ridiculous.
So I sort of refocused and I realized that health care is one of those things that people are often looking at online resources, while they're dealing with pain or caring for a loved one or something that That's what their focus needs to be. It definitely doesn't need to be accessibility and how do I access this information and how do I get out of this? What I need? And so I realized that in my opinion, and admittedly it's biased because of the experiences I've had, that it's a very important sector that just absolutely needs to be accessible because you don't always have a choice to go somewhere else like you do oftentimes in retail or even in banking. You can just switch to somewhere else. But you can't do that necessarily when it comes to health care. And I think that makes it more important than ever to make sure everyone has access to the information so that they can get the quality of care that they need to get.
Steven Jackson:
Well, I think first of all, you're educating me for sure. And I know you're educating our listeners, and I think you highlight just a lot of opportunities for education. And it's a couple of things I want to approach. Number one, being African American, and with the rise of conversations around race. And obviously on this show, we talk about health equity and trust, trust with patients and providers, trust with leaders in their teams, trust with organizations and communities, so many aspects of that. Sometimes I feel like on one hand the responsibility does lie with me to some degree to educate, but again, I need to live my life, too. I need to grow as a physician, grow as a person. I don't have time to educate every person out there who needs the education. And I'm wondering, do you often feel that way? And what responsibility do those, and I guess I can't just say without a disability, but those who want to know more, where does the balance lie between education of the person versus education of the person that might identify as a disabled or another demographic, so to speak?
Steve Sawczyn:
Yeah, it's an interesting balance. It's an interesting line to find. I think it happens quite a bit. I used to have a guide dog, and whenever I would go to the airport, inevitably someone would stop me and want to talk about my dog and all this stuff. And I just wanted to get to my gate because I had a flight to catch. It's not that I didn't want... And I remember one person was like, "Well, you're being so rude." And I'm like, "I have to catch a flight. I don't have time to talk to you right now." I didn't come here to talk to you. And so I think what happens is that balancing that want and desire to educate, but I think for those that are wanting the education to realize or to sort of look at the context, is it appropriate right at this moment for the person to give you that education or to give you the information you want? If I'm at a coffee shop drinking coffee and working on my laptop, maybe now is not the time to come over and be like," Hey, have you always been blind?"
Steven Jackson:
That's true, though.
Steve Sawczyn:
You just wouldn't do that normally. And so I think that I love to educate. I love to raise awareness. I think it's fantastic and important work because I think I'd rather people ask questions than to make assumptions. But I think time and place is very important. Speaking of airports, I was at one another time and a teacher came over and she said, "I see you're busy at the moment. I teach in the local system. Would love it if you could talk to our class or if you know someone who would." And I thought, wow, she doesn't just assume I'm going to drop everything and rush to her classroom, which I actually would have been glad to do.
She said, "I'm looking for this info. If you can help me, here's my information. But I see you're busy and I'm not expecting you to react to it right now." And I thought, thank you so much. I appreciated that a lot and I was happy to make sure that I was able to get in contact with her. So I think that's part of the line that is hard to find, is people recognizing that while we may be happy to educate, we also are people doing people things. And we are not put on this earth expressly to educate you, without putting too fine a point on it. And I think that often gets lost and people get kind of upset or indignant when they don't receive that immediate response. And they forget the fact that, oh, wait a minute, this person might be here for some other reason than to just be here for me.
And it is hard to find that line, but I think education is very, very important. There's nothing more damaging, I think, than when I'm out somewhere and a small child says, "Mom, why does he have that white cane?" And the mom is like, "Shh, let's not talk about this." And tries to shush the child. No, if it's possible, let's educate the child. And if you don't know, then it's a good segue. But the worst thing to do is to make the child feel in some way that they should not have asked the questions, because that's inhibiting curiosity. And curiosity is great. Curiosity is how we move forward, I think. And so there's sort of those two very different extremes.
Steven Jackson:
Yeah, it kind of perpetuates ignorance too. And at HealthPartners, we have different campaigns and initiatives. One of them is make it OK, particularly regarding talking about mental health. And I think some people stay in the darkness of ignorance when it comes to mental health because sometimes in certain circles it's taboo to talk about. And so yeah, let's not talk about that here. And sometimes based on how you're raised, you don't talk about that stuff in the house or you keep that under wraps. And I think it's in a similar fashion, the same way when you think about disabilities. Where I trained for residency, we would help the Paralympics. There was the wheelchair games that were actually held at the VA (Veterans Affairs hospital) that I trained at. I don't know what's... It's been a while now. I don't want to date myself, but it's been some years.
And leading up to those games, we would have different events for residents. It would be for education or also be for experience so that you can help people that are doing say, power soccer or adaptive golf, because we're there essentially as we kind of assist with the experience because we're showing people different ways of doing things. I don't play golf anymore, hey, there's a different way to play now. And I would always make it a point when I could to have my kids with me because I've seen kids point, I've seen kids when they see a wheelchair or somebody who's blind go the other way or almost be afraid because who knows what they've heard in their own household. Like yeah, we don't talk about them or we stay away from them. And I just think, again, it's just an opportunity to really have a real conversation about that. And it goes back I think to some degree, to the intersectionality between disability and identity.
Steve Sawczyn:
Yeah, I agree. And I think also those things may also be impacting the person with the disability too. There are many people with the disability who, for example, may not seek mental health services because it was taboo or wrong as they were growing up. And yet they very much need those services struggling to come to terms with their new disability. I kind of feel a little lucky that I was born blind because I didn't have to get used to it. I don't miss it. I don't miss seeing because I never did. So in some ways that's kind of an advantage. I didn't have to mourn the loss of something. And that's I think a real struggle for some folks who have disabilities that may have always been hesitant to seek mental health services. So now you're navigating two pieces. Now you're navigating the new disability and the anxiety I guess or whatever, around seeking mental health treatment.
And that's a difficult thing to do at the same time. And certainly not everyone is going through that experience, but that's an experience that, again, when we label we run the risk of forgetting that, oh my gosh, this person has other struggles too. That the fact they can't see or they can't walk or whatever, that might not be the biggest struggle that they're dealing with. It may be the most visible struggle that we see, but internally they may be dealing with stuff on a level that is a much bigger struggle than what we might be able to view externally.
Kari Haley:
Yeah, I think just kind of thinking about our conversation here, a lot of it, too, when we've talked about in the past with any sort of marginalized group, especially the othering that we do, so it's like the cross section of othering. But then also trying to get beyond the othering and accepting and the acknowledging. We have to acknowledge the disability, but it doesn't define the person. We don't need to other them. But then also the respect for the person for not interrupting their life to make it about you instead. So it's still your life. It is your disability. It's great that people want to learn more about it, but you wouldn't necessarily do that to someone who does not have that disability. You're not going to go up to them. And I don't have someone come up to me to try to interrupt me at the airport because they want to talk about my bag, but they want to maybe interrupt you in your life because they see you have a dog.
So it's like that othering, but that also the respect that we need to have for each other. And I guess my point would be too, just thinking about how we can treat each other well. And what does that mean in terms of how we can treat each other well, especially in health care. Do you have any final thoughts, I would say, on what we can do better?
Steve Sawczyn:
I think you said it. I think it comes down to respect and just humanity and dignity, and just recognizing that the person that you're talking to or caring for or whatever is a person. They may have a disability, they may be gay, they may be Black, they may have a disability and be those two things. And it's entirely possible. But either way, they're a person that is deserving of compassion, of dignity and of respect. And having a disability doesn't add to or detract from that, it's just another part of what makes that person the special person that they are.
Steven Jackson:
Honestly, I think it goes without saying that we're going to have to bring you back. We've only-
Kari Haley:
We've scratched the surface.
Steven Jackson:
Oh, my God, we've barely even done that because there's just so much-
Kari Haley:
It's a bit on the surface.
Steven Jackson:
There's so much I want to ask you. I'm not going to make it about me, but there are questions I think that'll be very valuable to unpack for not only us as hosts, but for our audience because conversations needs to be had. And I love what Kari just talked about with the othering and the things that we wouldn't do in other contexts. But we'll pull you aside and interrupt your life because we feel like we can. That's not cool.
Steve Sawczyn:
I've got so many stories, so many stories.
Steven Jackson:
I can only imagine.
Kari Haley:
We'll have to block off a good couple of hours because I want to hear that.
Steve Sawczyn:
Oh, my gosh, some of them are just wild. I'll tell you about the Bruins game I almost went to that I didn't intend to go to because people assumed that's where I was going, and they literally picked me up. I Hockey
Steven Jackson:
Oh, no.
Kari Haley:
No, they didn't.
Steve Sawczyn:
Hockey fans they're pretty intense at times.
Kari Haley:
Yes, it's true.
Steve Sawczyn:
There are lots of stories and mine are fortunately very comical, which is great. But unfortunately, many people have stories that are more traumatic, which is really the unfortunate part because at the end of the day, it really is a result of that lack of respect or lack of humanity being shown that has such dire consequences. So I'm really happy the conversation that we're having and hope it continues and would love to be a part of it however I can be.
Kari Haley:
Well, thank you for taking the time out of your day to come chat with us. For all the work that you do at our organization too, to make sure that we are being an accessible organization. I would be remiss to not mention that there is an accessibility email address for anyone who does have questions about what we're doing at HealthPartners or any suggestions. It is accessibility@healthpartners.com. So do you have any other final closing thoughts, words of wisdom, excellent stories? I know you have many.
Steve Sawczyn:
I do, but just I guess treat... The golden rule, treat others as you'd want to be treated, that sort of stuff. Please do write in if you are someone who has a disability and you are having accessibility challenges with any of our sites, please do write in. We'd love to think everything is fantastic, but we need to know when it's not. Ultimately, you need to be able to focus on getting the care and the information you need, and it's our job to make sure you're able to do that. So don't get frustrated and go away. Just get frustrated and send an email. It's fine. They all go to me, and some of them are not very nice but I get that most of them come from a place of frustration. So please do reach out if you are a member patient and you're encountering some sort of challenge, because we want to make sure we help you overcome that challenge or resolve whatever the issue is.
And if you're curious what we're doing, how we're doing it, reach out as well. Heck, if you just want to say hi. It's always great to hear friendly people who aren't mad at me for something I haven't done.
Steven Jackson:
Love it. Well, Steve, thank you so much for your time today.
Kari Haley:
Yeah, thank you so much, Steve.
Steve Sawczyn:
Thank you so much for having me. It's been a pleasure.
Steven Jackson:
"Off the Charts" is a production of HealthPartners and Park Nicollet.
Kari Haley:
It is recorded by Jimmy Bellamy, with creative by Peggy Arnson, Tina Long, Tim Myers and Jeff Jondahl.
Steven Jackson:
Production services provided by Matriarch Digital Media.
Kari Haley:
Our theme music is by Ryan Ike.