New Matter: Inside the Minds of SLAS Scientists

Accessibility in Lab | Conversations Around Accessibility with Sara Siwiecki

January 16, 2023 Episode 138
New Matter: Inside the Minds of SLAS Scientists
Accessibility in Lab | Conversations Around Accessibility with Sara Siwiecki
Show Notes Transcript

Welcome to the third part of our series on Accessibility in the Lab. Each episode explores the importance of accessibility in the lab, academia, the workforce and other applications.

In the previous accessibility episodes, we asked our guests for their input on how to talk to someone about accessibility – specifically in education and the workplace. For this episode, we're expanding our look into the conversations that can make all the difference for someone with accessibility needs. Our guest for this episode is Sara Siwiecki, a Biophysics Ph.D. candidate at Yale university, who actively volunteers for two Yale organizations serving graduate students: the Yale Disability Peer Mentorship Program and the Yale Graduate Student Disability Alliance.

Key Learning Points:

  • Advice on how and where to begin with having these conversations
  • How scientific events, conferences and other activities can be more accommodating 
  • Tips for how to speak with someone who is not receptive to accessibility needs

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Hannah Rosen: Hello everyone and welcome to New Matter, the SLAS podcast where we interview life science luminaries. I'm your host Hannah Rosen and today we are continuing our series on accessibility in the lab by focusing on having conversations around accessibility. Joining us today is Sara Siwiecki, PhD Candidate at Yale University. Welcome to the podcast Sara. 

Sara Siwiecki: Thank you for having me, excited to be here. 

Hannah Rosen: Oh, it's our pleasure. So, to start out with, would you mind just kind of giving us a little bit of your background and tell us what got you interested in the topic of accessibility in the lab? 

Sara Siwiecki: Yeah, so I'm a fourth year PhD student at Yale in biophysics and I work on jellyfish, which is really fun and exciting and do a variety of kind of like in person, wet lab, experimental work, sometimes a little bit of computational work, and recently dabbled a little bit in field work. So, that has all been really fun to kind of get to see all the avenues of science that are possible. And then in terms of lab accessibility, basically I got involved because lab accessibility became something that was like, very personally affecting me. And then from there I kind of like, realized how much of an issue it is in general. And so, I have a degenerative genetic disorder where basically my vision is kind of like, decreasing over time. And this started when I was doing my undergraduate degree, so I didn't really have any issues until I was about like, 20 years old. And then in the past like, five years it's progressed to the point where basically I have like, really constricted tunnel vision. So, my central vision is pretty good and because of that like, most people can't usually tell that I can't see very well. And so during the day I have really constricted tunnel vision, and then in the evening I am almost nearly completely blind. So how this translates into the... into the lab is obviously during like, my normal personal life like, this has a lot of effects on like, social things and stuff like that, but in the lab things like using microscopes, kind of like navigating new spaces, field work was really tough in terms of like, figuring out what accommodations worked for me, and there's very few people with visual impairments, but also disabilities in general, and science to like, talk to in terms of to figure out what is most helpful. So basically, I just started doing a bunch of like, research myself and a lot of brainstorming and talked about it with friends and realized that like, so many different things in the lab are inaccessible to a lot of different people of like, varying disabilities, so that's how I got into this is kind of, it was personally affecting me and then I found that it was kind of like, almost interesting actually to kind of like, brainstorm new ideas of how to make labs accessible. 

Hannah Rosen: Well, yeah, I mean that's... that's fantastic that you were able to go out and do field work. I'm curious if you don't mind me asking, you know, what were those conversations like around getting those accommodations for doing field work? Because, you know, I've done field work in the past and it's... it didn't seem like the kind of environment where accommodations were taken. Like... like, I mean, we were... it was demanding for even, you know, people without disabilities, so I'm curious what, you know, how... how easy or difficult was it for you to have those conversations? 

Sara Siwiecki: It's yeah, it's definitely super demanding. Uh, we were doing stuff like, all... all hours of daylight and before and after that. So, in terms of that I basically, before I went on this trip I kind of was just like, thinking about with my partner and some friends about like, safety issues that I had and kind of what I could do to fix those problems to the best degree that we could and try to just be as open as possible about those issues. So, after kind of like, brainstorming with my friends, I then talked to my advisor about it, who, my PhD advisor like already knows about my disability, and we've worked on stuff in our lab here on campus to make things more accessible. And she was very like, understanding and luckily like, knew she wasn't going on this trip with me but like, knew the people that I was going with and she was like, I feel comfortable like, advocating for you rather than you just like, coming out of nowhere with these people that you don't really know like, asking for all of these things. She was like... I... I'm happy to like, vouch for you. So I'm really glad and like, grateful that she was like, so supportive about it. But basically we then like, would talk to the people at the research station and ask like, what the environment is like there and what we could do to make things a bit easier for me. So, with like, field work, basically I asked for actually my partner to be able to be with me at the research station for the first few days so that like, he could help me navigate the area in the evening so I could get to know the area, because that's really hard for me at night by myself and I didn't know anybody that I was going with. It was like a workshop that we were doing and I didn't want... like I didn't feel comfortable just like asking random people I've just met to like, hold my hand and walk me around everywhere. So that was really nice that they accommodated for that. And then other than that it was like, more normal, it's lab stuff like making the microscopes accessible for me. Basically just like, having them understand that like, I might need more help and like, having an open conversation and like, a dynamic conversation over time to see what we could do. Like, we were doing lots of snorkeling and one of the instructors was like, oh do you wanna like, use my dive light because that might help and like, showed me like, how to use like, gloves to make like, things look like, brighter or they just like, have a nice background while underwater. So, people were really helpful and like, really understanding. But also, being there, I was like, wow like, things are really, really inaccessible. And I mean, it's kind of like, an issue that just like, happens worldwide. And obviously it depends a lot on like, funding for places to be more accessible. But I at least had a good experience. I know it... it can definitely be probably just not possible, depending on what your disability is, but luckily, people were able to like, help me figure out how to make it work for me. 

Hannah Rosen: Yeah, that's great. And I'm sure it helped having your PI who is a person in a position of authority to be able to kind of come in and... and pave the way for you a little bit by talking to people with you. That's yeah, I mean, that's fantastic. I'm so glad that that worked out for you. 

Sara Siwiecki: Yeah, yeah it was great. It was also, I guess, I also got a little bit of support from university’s like, accessibility office in general because I... I, going into it I was initially like, kind of freaking out because I was like, I had no idea how this works like, at Yale or like, any place in the US. They... they're like, required to like, make things accessible for me, but I was like, I'm going to another country and I'll be at a US institution in another country, but I don't know what that means, like, legally. So, they kind of helped support me and that they were like, if they like, when you're there aren't doing anything and you need, like money to buy something or just like, people to help you have conversations like, they were there and to support me as well, which was also like, super important. And luckily we didn't really end up needing that, but it was nice to know that I had that like, backup support. 

Hannah Rosen: Yeah, absolutely. So kind of, you know, talking on a broader scale, you know, in general, why should we care about having these sorts of conversations around accessibility? 

Sara Siwiecki: Yeah, so I think accessibility conversations are really important for a lot of different reasons. One of those is the concept of universal design. I don't know if you've heard of it, but it's basically like designing things in such a way that they are accessible and usable to as many people as possible, kind of regardless of disability. So, conversations around accessibility are important because like, even in just like, normal senses, people might be like, oh I'm a morning person or I'm an evening person, and being able to kind of like, find jobs and create your work schedule in such a way that can like, accommodate that is usually like, most useful to most people. Obviously, not always possible, but that's kind of just like, a really basic and like, super common way that like, accessibility and just the sense of like, creating a life that works best for you is important. But in... more in terms of like, actual disabled people, a lot of people in the US like, are disabled. So, in the US it's almost like, 20% of the population is disabled at some point in their life and anyone can be disabled at any time. Like, if you break a leg or something like that and you need to be in a wheelchair or crutches, you can always just become disabled. Just kind of unfortunate, but it is a fact of life and... and making sure that things are accessible and being able to have like, open conversations about how to change environments to make them accessible is really important just so that, not like every single human being has to have this conversation over and over and over again, because that's really frustrating, obviously. And, in science like, there the disability representation is even lower than what it is in the total population, I think it's like 9% or maybe even lower than that in terms of how many disabled scientists there are out of all science, which is a lot lower than 20%. So having these conversations in science is also really important because not many people are talking about it, so it makes it easier to talk about it also, the more you talk about it, yeah. 

Hannah Rosen: That's really interesting. I wonder, you know, cuz you're talking about this whole like, morning person versus night person and it kind of takes me back to when I was in grad school and we had, yeah, we... we would have some grad students who would, you know, roll in like 10 or 11 and then work until, you know, 8 at night, just because that was what worked better for them. And it was an environment that was conducive to that, and I'm wondering, you know, both in academia and in the workplace, do you think that having conversations about that and people advocating for things that just work better for them personally, even if they don't have a diagnosed disability necessarily, but just saying hey, my personality works better if I can do, you know, this work schedule? Do you think that, that ends up helping people with diagnosed disabilities in the long run? 

Sara Siwiecki: Oh, definitely yeah. Like, if everyone was having that type of conversation, that would be like, really helpful for me. For example, like, I don't love working into the evenings because it gets dark and then it becomes like, a whole thing that I have to like, think about how I'm gonna get home, which is like, possible but I don't love doing it all the time. So I usually ask like, as much as possible, like, if I'm just going to work during day. And luckily for me, I consider myself a morning person so that works for me. But if I didn't have to have that conversation and people were just like, when do you want to work and I would just work whenever that would be, that would be great, because then you don't have to like, spend energy explaining why I'm asking for what I'm asking for, basically. 

Hannah Rosen: Yeah, absolutely. It makes it less of a big deal and just, yeah, part of the... part of the norm, which I think is the ultimate goal, really. Yeah, exactly, that's great. So, what can be some of the challenges that surround having conversations about accessibility? Both you know, as a person with the disability asking for accommodations or something, or even just you know in general, trying to make the environment more inclusive? 

Sara Siwiecki: Yeah and so, a lot of these conversations require like, a lot of vulnerability. Vulnerability, and trust to the... like, with the person that you're having the conversation with. And also, just kind of like, courage and confidence in yourself and what you're asking for and having all of those things is very challenging. And I know, especially like, with having these conversations with an advisor or any real superior. Unfortunately, almost everyone I know that has these... has to have these conversations is really uncomfortable and scared to do so because they're worried that their advisor will think like, oh, you're just like, making excuses or not working hard enough or being like, "lazy,” and that's really disappointing. And unfortunately, why like, it is so scary to have these conversations is, it's not something that's like, not heard of like, I know people personally that have had that experience. And that's really tough to go through, because then you kind of have to decide, like, OK, do I want to make this a big thing or just like, live life uncomfortably and potentially be even like, more unproductive, which is really not in like, your advisor's best interest. But yeah, like, having... being able to trust that what you are saying is... trying to be listened to is really important and taken seriously and that you know that like, you're not going to have to have this conversation again or remind people over and over like, that you need whatever... whatever and it's... it's also often like a... a concern of like, privacy. And that I know like, a lot of people as well, like, are worried about having these conversations because they don’t know fully like, where this information is going to go. Like, the information should just be... stay with the person that's being told the information, but that's not always the case, and that's usually a concern and challenge as well. It's kind of like all of these things and, especially like if you also don't know, for example, maybe what accommodation you need, which is really common in science and that you're just like, this isn't working for me, but I don't know what is available, that requires a lot of like brainstorming on your part and being able to do that like, kind of ahead of time before having a conversation with an advisor can be difficult because it does require some back and forth. You're also almost kind of like posing something to them, like this is what, like, I think is best and like, having them trust you is really important, so yeah it can be challenging for a lot of reasons. 

Hannah Rosen: Definitely, and do you have any advice for individuals who maybe are trying to have conversations about accessibility, but then the... the people that they need to have those conversations with, such as a PI or an advisor or a boss you know, aren't... aren't being receptive to what they're trying to say, you know? Do you have any advice for what you should do in those situations? 

Sara Siwiecki: That's really tough, and I feel like my best advice as a first step is always to just like, take a moment like, for yourself to breathe and like, know that what you're asking for is totally warranted and OK. And... and people being unreceptive is not like, your fault, and you're not just making it up or things like that. And... and then, once kind of like, the person feels like, ready to, I would say, at least how things usually work at Yale, for example, and I think most universities in the US, is going back to the accessibility or disability office and telling them what the conversation was like and seeing what the options are from there, whether that be figuring out a way to like, compromise with your advisor and that you're like, OK, maybe I'm not going to get fully what I need, which is really disappointing, but I can do whatever which is going to help a little bit, and hopefully advisors are a bit more accepted to that. Or I have also heard of people going and talking to the accessibility office and it kind of becoming a little bit of a bigger situation and that the accessibility office is like, OK, no, we're going to talk to your advisor like, without you, basically, and advocate for you and tell them that they have to do this. Uh, because at the end of the day they have to do it. Like it is, uh, illegal for them not to provide accommodations and... and it's usually kind of a conversation of what they think is reasonable. And sometimes without like, the student present, that conversation can go a little bit better because the advisor is not really talking to somebody that's under them, but like, talking to somebody that they have to listen to if they want to like, maintain happiness at their job. So yeah, those conversations are tough, but I think there are kind of like, is to go and that ultimately the university wants to keep like, their students happy or even a workplace would doesn't want to do things that, like, makes people really upset. 

Hannah Rosen: So yeah, yeah, it is unfortunate though, because I would imagine you know, after having those conversations between either an advisor and the student resources or, you know, your boss and HR if you're at a company, I would imagine that your advisor or boss is probably... they might harbor a little bit of resentment. You know, after you know, they'll... they'll be forced to do it, but it might not make for the best work environment, and so that's really, I mean, it's really disheartening, and I wonder if you would have any thoughts for, if there's anybody listening here who maybe has that very old school mindset of suck it up and deal with it you know, it's you know, your problem, not mine. You know, what would you say to them to try to make them understand why these accommodations and these conversations are so important to have with their students or employees? 

Sara Siwiecki: Yeah, I think that's really... it's really tough because you really don't know like, what the person is going to say or how they're going to react. I think in like, these cases, like yeah, a lot of times that will create a very like awkward working environment. And it's potentially scary if you like, need a letter of rec from this person for the future, or a reference or something like that and... and I think it kind of like comes down to, unfortunately, like, deciding like, how... how necessary it is for you to like, work with this person. Like, if you're in a lab and like, this comes up relatively early on in your PhD, like do you need to like, work with this person, or is there somebody else that you can find that is more receptive and understanding? And you can go that route, but obviously that has like, a lot of challenges in itself of just having to like, talk to new people, learn new things, do a lot of like, self-advocacy, or otherwise. I mean, I guess like having conversations about like, the importance of disabled people in the workplace is pretty good. I was looking into like, some readings about like, why people... disabled people aren't really in a lot of stem spaces. And a lot of it is just because of attitude of like... bad attitude of people in the workplace around disability. And this one study found that actually having kind of like, trainings where people, faculty, or whoever, were shown that disabled people are in STEM and do productive work, and having like, a variety of people in your workplace really helps for innovation and kind of just making everything comfortable for everyone, and then that can be shown to like, be effective sometimes. But obviously the implementation of that is really difficult, and if you're already feeling like you are not being listened to by somebody like, further pushing and being like, oh, like no disabled people matter, like genuinely, that can be really hard to further talk about with somebody that's not being receptive. But, potentially at more of like, a higher level, an administrative level, maybe can be helpful to just like, talk about it more too so that they will potentially become more receptive and like, make it actually connect to them as a person in ways that maybe they feel like they're not being accommodated for so that they understand what you're talking about. 

Hannah Rosen: Yeah, I think that that's a really good point, and it's something that I think is valuable to discuss, is that these conversations shouldn't just be happening between somebody with a disability asking for these accommodations, we should be having these at all levels, because where we're going to see the most change probably is at these higher levels. You know, between the administratives and the, you know, advisors, or you know, wherever that higher level of the organization is like, that's where change is going to be affected. And so yeah, having those conversations at that higher level absolutely is crucial I would think. 

Sara Siwiecki: Yeah, yeah, definitely. It's something that I... I always hear people in the disabled community in STEM like, talking about that. They really just want more trainings for people at the higher level to know what disabilities, or how to go about having conversations about accessibility, things like that. Because it often seems like people have virtually no training about it, so then it... it really does make it difficult for everyone like, including the faculty and that they're like, they don't know what to do, and if they were told what to do, it would probably just be easier for everyone. 

Hannah Rosen: Absolutely. And I think too, especially with... in my experiences with... I don't want to generalize, but a lot of times you get with the older faculty or you know, older staff, you kind of get this mindset of where “I had to suffer through all this stuff, and so you all have to suffer through it too.” And so, I think that that's a tough mindset to break as well of just like yes, things... these things weren't available to you, and it would have been great if they were. So why aren't we making it easier for the next generation? 

Sara Siwiecki: Yeah, yeah, it's... it's unfortunate because it does feel kind of like a... a radical mindset in a lot of ways of being like no like, what if life was easier? Exactly. Does it need to be hard for everyone? No. 

Hannah Rosen: Yeah, it's so crazy. That has always blown my mind, this idea that it's like yes, no life shouldn't be... you should be suffering and working... working extra hard to get through this part and it's just like, why? 

Sara Siwiecki: Why? Yeah, yeah. 

Hannah Rosen: So, you know to that end, if there are people out there listening who want to create a safe space for these conversations to have in their labs, you know, what are some of the things that either lab mates or advisors can do to create a safe space for having conversations about accessibility in the lab. 

Sara Siwiecki: Yeah, I think simply like, opening the space for that as much as possible, like when relevant, is kind of the first step of like, when somebody first joins the lab being like, is there anything you need in your lab space to make this work best for you? And that immediately like, opens the door for you to share any accessibility needs that you might have and shows that your advisor cares enough to have this conversation, which overall will lead everybody to be happier. So kind of on an advisor level, that's really helpful. In terms of like, just existing in a lab with other people, having conversations with my lab mates is usually really nice as well, and that can be like, as simple as just like, I usually... I think I just... I've had conversations with my lab mates at different times, like probably not even relevant to like, something in the lab. Like, we were probably at the lab outing or something, getting something to eat and I was like, oh, by the way, like, I really can't see in the evening. Just FYI, if I start walking into things like, you know why. And then that's led to actually in the lab people asking me like, oh, do you need this, like, do you need that, is there some way I can help you, uh, if I seem to be like, struggling. So having an open space and just like, asking people, often is the easiest way to go about it and to make people feel safe and comfortable because you're giving people room to be able to talk and not have to like, self-advocate constantly and have to bring it up a lot. And, of course, like, there's extremes to this or that, like asking disabled people for like help constantly is not helpful and... and knowing, like, limits to that. But kind of just like, occasionally, if there's something new going on or like, for example, if something... someone moves something in the lab and like, they would know that I would have trouble finding it, that's like, most people would have trouble finding it, letting them know things like that are usually really helpful. I also think like, recommending, kind of, ways to be involved in a community with people that are like, understanding is really helpful. So, for example, like, at my school we have a like, a peer mentorship program for disabled students and promoting like things like that, like, even if you're not a part of it, but just knowing like, oh, like, if you think you want extra support for the people that really understand like, there's this program that I know of. So, kind of just like being familiar with resources for new students or new people working in your lab is really helpful as well, so they can have community and support outside of lab and in lab together. 

Hannah Rosen: Yeah, and that's... that's really great advice. I wonder, you know, what are the differences between having these sorts of conversations with your lab peers and an advisor or school administrator because you know, obviously with the school administration, your advisor, you likely have to have those conversations kind of right off the bat, but I imagine it can be a little more challenging to figure out when's the right time to bring this up with your lab mates or peers. So, you know, what's your... what's your advice on that front? 

Sara Siwiecki: Yeah, with peers, things I find are usually often a little bit more relaxed and easier to bring up because a lot of times like, peers, or your friends and people your age in the same like, life situation that you are, and they wanna support you. So, I find that with friends it's... it's really dependent on the context of when... when basically accessibility needs come up that I'm like OK, I should talk about this now unless it somehow organically comes up before that, which sometimes does happen. Fortunately for me, I guess, I do a lot of like, disability advocacy, so I'm always like, oh, I need to go do this thing and people are like oh, what is that? So then it like, very organically like, leads into a conversation about my vision. But in other cases, when that doesn't happen, it's usually just when something comes up that I'm like, OK, like, just by the way, like, this is what's going on like, if you have any other questions about it like, let me know, this is just what I need. And people are... have always been like, supportive about it. Like, the only challenges really are sometimes just having to remind people or people like, not quite seeming to take it seriously and that they're like, oh, everybody struggles, everybody’s blind. And I'm like... But that's like, the only challenging thing, but it's not like... it's not that frustrating compared to like, things with advisors and like, genuine accessibility needs. Those things are kind of just like, low level like frustrating, at least for me. And yeah, so peers are... are usually OK and lab mates are usually like, really helpful and understanding with school administration, I find, kind of unlike advisors in a way. Like, if we're talking about like, the accessibility office, or like, other people like, that are high up like deans or something like that, they usually like, at least here, want to keep you happy. So, like, I rarely have a conversation with a school administrator that like, I leave feeling super frustrated. Like, I always feel like somebody's listening to me. It's just a matter of if like, action is actually going to happen based off of that conversation or not. So sometimes, like, things end up falling through the cracks and that's frustrating. And like, that's the challenge of like, holding administrators accountable, basically. But in general, those conversations themselves are usually OK until they reach the point that you're like, OK, we've talked about this three times and it's still not being fixed. So, that's where that frustration comes from. But most of the time I... I feel that they're trying to help, and it's kind of like barriers that they're having to go through to reach a solution. And so, most of the time those seem OK. And then yeah, advisors, like we were saying earlier, those are usually challenging, and that you have to be like a lot more personal and it's somebody you're working with like, day-to-day. Whereas like, administrators, you're not seeing them every single day, so that can be tougher because it's... it's a lot more... has to do with like, who you are and how you work rather than... it's like calling somebody up and being like, I need this for an administrator and them being like “Ah! OK!” Yeah. 

Hannah Rosen: I wonder... so, I know a lot of times, you know, if you're working in a lab and maybe you have a lab mate or a peer that either you know or you suspect is struggling with a disability but hasn't felt comfortable talking about that with you yet, but you... you want to express to them that you're supportive and you're willing to, you know, advocate and help and, you know, just kind of be there for them. Are there any good ways to kind of approach that conversation to make sure that it's a safe... to... to let them know it's a safe space, but without kind of overstepping? 

Sara Siwiecki: Yeah, yeah, that's a really interesting question. Uh, I think like, a lot of times, like, if you show that you're being a little vulnerable, people are more likely to like, come forward as well and speak a bit more personally about the issues that they might be having. So, for example, like, I don't know, I... I can't think of a super detailed example, but like, if you're having some sort of issue that you're just like, “oh like, I'm just really tired” or like, I was sick or something and like, didn't get a lot done and then like, it's so frustrating like, da da da. Like, kind of like, sharing your own personal struggles with something, whether that be like, illness or like, you have a lot of family stuff going on or whatever that might be leading into some way, like, making your work life not as ideal as you would want it to be, and... and kind of saying like, yeah, like, is there anything that is bothering you or like, anything that you would want improved in the lab is really helpful. And just like, having regular check-ins, I'm just like oh, is everything going in the lab OK for everyone, or like, do you need anything? I give space for people to say something, but it definitely can like, take a while for a lot of people to open up and... and that's OK. Like, if you see someone that you're like, uh, they might, like, need help with XYZ, if it's something that seems like, simple and not like really like, kind of like, outing them, I guess by bringing it up it might be OK. Like, I don't know if I'm like, looking for something on the floor, for example, people are like, oh like, what are you looking for, like, let me help you. Like, that's helpful without like, really pushing too far into like, what's going on. So, kind of like, starting small I guess and like, being open and vulnerable yourself is helpful and really nice to just create a comfortable workspace for everyone. 

Hannah Rosen: Yeah, definitely. So, to that end, I wonder, you know, are there any differences with conversations around accessibility when it comes to invisible disabilities, such as like mental health issues or, I'm sure even for you you've experienced it because your... your disability isn't immediately evident.  

Sara Siwiecki: Yeah, yeah definitely. I think that, that plays a huge role into how these conversations go and how you get... how like, your accommodations end up being implemented. And... and that... yeah, for example, for me like, I can go a while without needing to tell anyone or anybody really suspecting anything. Like, a lot of people just think I'm like, quite clumsy, which is relatively normal and like, I am, I think outside of like, not being able to see very well, I think I just AM and... and that's OK. But I think like, uh, it can be a lot harder because it requires like, somewhat like, even more vulnerability, and just that you're like, really have to open up and like, trust that somebody's going to believe you, even if they don't see like what you're talking about with your disability, because obviously they aren't you and they're not going to know and... and hoping that people believe you is pretty much it. Which is like, unfortunate because I think a lot of people do run into kind of like, imposter syndrome like, with disability. Like, I know like, I do sometimes, of that it's like, no like, I don't seem disabled enough for this and that's really hard. So, I think like, there's a bit of a personal aspect of like, working on your own confidence, like in yourself, to be like, no this iIs what I need and asking for that. And then there's the part that's the actual person that you're talking to, and knowing that they're going to trust and listen to you, I think like, sometimes like, even providing resources or things like that is often helpful. Like, I've had people tell me that like, it would be useful for me and for others probably, and having these conversations to kind of like, map out like, what my vision looks like a little bit so that they can like, kind of anticipate and understand what's going on. And like, they don't have to like, ask me constantly like, what I need or if like, something is not working for me and... and they can be a little bit more proactive about it. So, I found that sharing resources is really helpful or like, I don't know, just... just talking about it. For example, with my advisor when I first told her, she immediately was like, oh, I know somebody else that has that exact same condition, which is was really cool because I was like oh great like, you understand, like, I don't have to over explain myself to you because you have a friend that you like, grew up with that you have experienced being around. So, I think kind of trying to find a way to like, relate to get people to relate as well is helpful because I feel like somebody... everyone knows people that are disabled, whether they know it or not because of invisible disabilities, so kind of trying to humanize it a little bit is helpful as well. 

Hannah Rosen: Yeah, absolutely. I was just thinking, as you were saying that, you know, you had mentioned earlier that something like 20% of the population is struggling with a disability, and so I would imagine, yeah, we probably all know way more people who have disabilities than we realize. And maybe, you know, the more common these conversations become, the more people will realize that “ohh I do know a lot more people with these disabilities and they've been struggling a lot more than I realized.” 

Sara Siwiecki: Yeah, yeah definitely yeah. And I think in a lot of cases like it's... it's kind of like, about like, disability identity a little bit too of whether somebody that like, does have something that would qualify as a disability like, wants to have that conversation and like, be involved in that space because like, there are a lot of people like, it's tough to say like, you're disabled, it comes with a lot of assumptions that people might make about you. And that's not easy, depending on what environment you're in, so there's a lot of people that I think don't want to identify as disabled, even though they might be, and so don't have these types of conversations. But it is genuinely, yeah, like, easier for everyone like, the more people that are talking about it and like, the more comfortable everyone can be in their workplace and also just like, with themselves and being able to function like a normal human being. 

Hannah Rosen: So, one more thing that I really wanted to kind of talk about was, you know, we... we talked kind of at the beginning of the podcast about field work and your experiences there. But there's another area that I feel like kind of gets overlooked pretty often, which is, you know, academic and professional conferences and the accessibility there. And it's... so, like we're not really having a lot of conversations about accessibility there, so can you kind of share what are some of the accessibility challenges that are common at these conferences, and how can people work to make their presentations or experience as a conference is more accessible? 

Sara Siwiecki: Yeah, that's a great... great point because I feel like they are kind of like, short little things that people are like, “oh, whatever, like, people will figure out what they need, we don't need to like focus on it.” But conferences can be super inaccessible to a lot of people and... and I know like, a big one that I've heard about a lot since COVID started is people that are, you know, compromised or have like, chronic fatigue and things like that, that it's really difficult to spend all day like, four days in a row in this like, new place like, staying in a hotel and having to travel to get there and then having this like, super demanding schedule where a lot of the times are going to be like, listening to people or talking to people and have to be like, “on” like, the whole day can be really hard for some people. So, I think, in that sense, like, having breaks or like, knowing that like, people are not going to be at all sessions, and that's fine. And I think everyone experiences that of being like, I'm just gonna sneak out now and no one notices. And just like speaking that that's OK, um, and you don't need to be at everything, but also having like, virtual components to things and not making it like, weird if somebody's like, on the virtual parts and making sure that they also feel included even if they're not physically in that space. Yes, and I think that's... that's a big conversation and something that I've seen, at least, a lot of conferences are doing are still having virtual components, even if they are returning to having like, big annual in person conferences, which is nice. And... and then in terms of presentations, I know for people with... that are deaf or have hearing impairments that, obviously having like, sign language interpreters there is helpful, but I also know like, not everyone that is deaf uses sign language, so it can also be nice to have, kind of like, real time captioning available, which is easy, luckily. I guess when things have become on zoom, because zoom just has like, a live transcript available, which is really great. But in person we don't have like, subtitles following us around everywhere, although you can make that happen. So, I think it's like a relatively new technology, it's called, I have the name right down, let me just find it. It's called like, captioning real time transcript or something, and it's called it stands... the like, acronym for it is CART and it's basically just like, having a microphone that everybody that's going to speak is going to speak on a microphone, which is helpful if you're in a big room, as well, obviously, and then the person that is using this technology has like their own, like, headphones that are connected to the microphone so they can hear and have that transcribed in real time, which I know is really helpful for presentations or even just like, genuinely talking like, if you're at like, a social and allowing people that are hard of hearing to be able to participate in these conversations as well in ways that like, they haven't for a long time unless there's like, an ASL interpreter there. And so that's a really big one. And... and then for visual impairments and people that are blind, visual presentations can obviously be really difficult to translate into something that would work for people that can't see like, a figure or a whole presentation. So, something that's often recommended is to make like, your slides or a poster available to the person that has that type of visual disability ahead of time. But also, like, in the moment so that they can have a digital like, component of that. To be able to have like, the text that's on the slides or on your poster read out to them and then having like, alt text for any pictures or figures that are there so that they know at least what they're looking at. And obviously, this is kind of like, easier as well if it's like, a poster presentation, because you're usually like, talking back and forth with the person, so they can make... very clearly explain to you what's going on in all parts of their poster, even if the person can't see the poster. But with poster... with the like, PowerPoint presentations can be a little bit harder because it's usually like, one person talking to like, a big room of people, so being able to like, have those slides for their own review is helpful. Sure, and other than that, I think like, just having spaces that are kind of like, a variety of spaces for like, networking and things like that, like, having rooms that like, if there's alcohol involved, might end up being quite loud and that might not work for people that have autism or ADHD or other types of neurodiverse people or people that just want to like sit and be in a relaxed space rather than in like, a loud bustling space with a bunch of people. Having space that's kind of more just like quiet tea, coffee time so people can chat in a more calm environment is really helpful as well, because those are often like, components of conferences that I feel like don't always have that type of accessibility implemented in them because they're kind of sometimes seen as like, extra. But obviously I feel like a lot of times with conferences like, the most useful parts of the conference are when you get that chance to like, actually network and talk to other people, so making sure that those are available is really helpful. But overall, like, I think what's most useful is when you're first to have the registration for the conference and things like that, leaving a space open for people to say what they need so you know who's going to be there and what type of accommodations you want to account for when you're planning to come is really the first... first step that everyone should do and then everything on top of that of kind of just like, making sure where you can like, implementing a lot of accommodations ahead of time without people needing to ask necessarily is also really helpful. 

Hannah Rosen: Yeah, absolutely. Those are some really, really great insights and a lot of stuff that yeah, I hadn't even really thought about, but now I'm definitely going to be thinking about. 

Sara Siwiecki: Yeah, I... I didn't know like, several... several things and I was like, oh, these are really cool ideas. And yeah, reading about them was interesting to get to learn what type of stuff... oh I just found, CART stands for Communication Access Realtime Translation. 

Hannah Rosen: Thank you, thank you yeah. That's awesome. Well, unfortunately we're almost out of time, but I wanted to just ask real quick, is there anything that we didn't get a chance to talk about today that you think is really important to add to this, you know, topic of having conversations around accessibility? 

Sara Siwiecki: I think my like, take away point would just be to be kind to other people and not assume that people aren't paying attention to you, or are very clumsy, or like, aren't working to you... the expectation that you might think people are working at. Just being kind and leaving space for people to... to comfortably talk to you about issues they might be having is really all that's necessary and like, you don't like, obviously all of these fancy technologies and things are really amazing and super helpful, but at the end of the day, just having basic conversations human to human, it is like, the most important part before getting into how to actually implement accommodations and make science accessible and to, uh, to talk about it with other people because disabled people would love other people to be interested in accessibility because it really does help everyone. 

Hannah Rosen: Yeah awesome. Well thank you so much Sara for joining us today, it was a real pleasure to have you here and we look forward to keeping this discussion going and seeing you at future SLAS events. 

Sara Siwiecki: Yeah, thank you so much for having me. These conversations are really important, so thank you for giving me a space and others to chat about this as well. It's really awesome. 

Hannah Rosen: Our pleasure. 


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