 Thank you so much for having me in this forum to talk about practices for improving accessibility and inclusion and field, laboratory and computational science. I know I'm part of conversation five here. The first conversation was really about intersectionality disability and diversity. And then conversations two through four, we're about best practices for accessibility first in laboratory settings, then in field studies and then in computational work. I appreciate the work of these prior sessions to focus on these topics. But how we put all of these things together in thinking about access to careers and all their facets and their stages and into recruiting, entertaining disabled talent, disabled researchers disabled scientists, and the work that we do, while also recognizing that people can become disabled during their lives. So this is also about keeping and engaging in scientific research and science work over our lifetimes to my title here is the dream, which is to say my title is access at every stage, which is the dream for for all of the sciences, in terms of disability inclusion, and indeed beyond to have access at every stage to be able to go through education and career steps and not encounter barrier after barrier to your own participation, enjoyment and enjoyment and inclusion. The next slide is that this talk might also be called barriers at every stage, which is how it can feel for people working through the accommodations process, or wondering about disclosure, or having to creatively hack their own careers. In terms of accommodations. And then to be pushed back upon. By by artificial ideas about who belongs right because often there's an assumption that if you're too disabled, you do not belong. The title could also then be wanting to belong in science, or wanting to be to be able to be in science engineering and medicine to be, and to be without struggle that access and accommodation, often currently represent. So who am I to be talking about this work. Well, my work, weirdly, for the National Academies and to be a speaker here my work is about stories and storytelling and the narratives we tell about disabled people, particularly in relationship to technology. Typically, when we see news and entertainment stories about disability. Technology is helping disabled people overcome their disabilities. But stories from the disability community and from disabled people themselves aren't like this they don't tell the story, or if they do it's far more nuanced to technology might play a role in helping a person adapt. It may be something that's a constant source of the need for maintenance and repair. It might be something that helps in some aspect but it's not the sort of cure all that it's pictured as in a lot of our news and entertainment stories. I hear that this story seeps into how people think about accommodations that you get this thing, this accommodation of this technology, and things are magically transformed right, we're always told that technology is life changing for people with disabilities. And stories usually aren't about that. But this is the general perception. So, and here I'll use the terminology of Tanya Titchkowski, T a, and why a T it ch kow sky, where she talks about includeable, right that so much of the ableist environment that we're in demands that disabled people change themselves, function in particular ways to be worthy of being included. And that's sometimes how people think about accommodations well, if a disabled person is worthy enough has normalized themselves enough, then they might be able to imagine how this flows in thinking about doctors owes first keynote here, where he talks about intersectionality and who fits in terms of who gets to be includeable. I want space. I'm working in a department of science, technology and society I work with humanists and social scientists. But we look at the things scientists and engineers are doing. And my training is in philosophy of technology with a specific focus on technology and disability. I currently am working under an National Science Foundation career grant number 1750260, although this work does represent the opinions of the National Science Foundation. But I'm thinking a lot about disability community work later lately. I want a space for us to be proudly disabled in all the places we are for work and life to be able to disclose disabilities at work without fear. To get what we need, even when we can't disclose or when there is no clear label to disclose right not everyone has the diagnosis they need to access accommodations. We need systemic change to how we approach the business of disability more generally that is the processes at work in our workplaces as scientists. I think this is particularly imperative in the sciences, engineering and medicine, where non disabled people have often been as experts about disabled people in ways that often re-emphasize overcoming stories. And a lot of the work of science technology and medicine is about addressing disability in various ways. So having disabled researchers is incredibly important to getting what we're doing right, to serving the people we want to serve correctly to being in solidarity. With disabled people around us. And here's where it gets tricky because disability is an identity as well as a community, as well as a social construct about how we frame and think about the world and how we sort of people. The category itself disability points to a wide array of people with a lot of different neurologies, body configuration injuries and conditions. Many of us who are disabled are multiple disabled. We also have people from every other category of identity you can think of. So it's important to plan for disabled people to be, to be here, to be, to exist in these spaces without harm and without extra labor beyond what non disabled people encounter. So let's talk about this current approach to the business of disability. And I recognize that my talk is going to be a lot about accommodations in ways that I maybe didn't expect when I started writing down my ideas for this talk in fact. I need to say some things, and probably some mean things, unkind things about accommodations, because our mindset around disability inclusion is often well, those people have accommodations or we can make accommodations and then to da, we've included them. The accommodations mindset is one where if disabled people show up or if you become disabled, it's a surprise, and you then have to make a request to be included. And that request isn't a simple process. So, in fact, if you would like an accommodation first you have to identify barriers to your participation. Right, you have to know what the problem is in the environment you're encountering sometimes you know it's a physical barrier and something you can literally point to there's no ramp into this building. Other times, sometimes, you know, the way work is set up can be part of the barrier, right, the physical environment is part of it, but sometimes it's the flow of work sometimes it's, you know, a barrier to participation can be that it's really unclear what a process should be. So, once you've identified a barrier to your participation, then, in fact, in most workplaces, you are asked to get the appropriate documentation to show that you're worthy of this accommodation that it's an appropriate accommodation. And that usually involves a physician signing off. And of course it's assumed that you have a physician that they believe you, and that they will fill out the paperwork to help you get an accommodation. Not everyone has access of course to primary care, or the sort of documentation that they may ask for from specialists. When it comes to specific disability types. And of course then, once you've identified the barriers, once you've gotten this appropriate documentation which is not an easy process and a lot of cases. Then you're expected to present your documentation to the proper authority, possibly disability services office, or human resources department. Thankfully, they will know what to do when you approach them and ask for these things. And then it usually initiates a conversation between the authority. So the certification authority whether it's disability services or HR, the person who is your direct supervisor, and any supervisors that they have are possibly part of the mix and you, this is called the interactive process. Then, then you can work to fix whatever barrier it is, whether it's, you know the need for screen reading software. If you need to rest your eyes for longer periods of time, whether it's a nearby facility to work in right it's you can't get to the place, especially for people who are newly disabled this is something that can be really disoriented it's harder to get where you were going. It could be a nearby parking spot if you experienced a lot of fatigue, or proximity to public transportation, it could be the ability to come into work later or do telework. And, you know, even simple things like the permission to sit down on the job are part of what, you know constitutes, you know an accommodation in these cases, and then you can get that one thing changed. You go through this whole process, and you're given permission to get the one thing that you identified as a barrier changed. Now hopefully, give it a larger conversation, but you're not always said to having a larger accommodation about what accommodations you might need in the future. And in fact a lot of disability resource offices are not are not really wanting to talk to you about accommodations don't lead in the future they want to talk about the state you're in now, and what you need at the moment, which then there can be delays. If you have a progressive disability this is really frustrating, you would like a way to have seamless transitions as you need more supports put in place. That would help you work better anyway. So you've gotten through all of this red tape and you get the one thing changed whatever may, maybe that allows you to be to be included, but only be included in very specific terms, where you have had to navigate the most often hostile process, the paperwork authority bosses, and just simple expectations of work that people may be unwilling to be flexible on constitute extra steps to being places to being in science, and to being in research and this is a process that unless you're never really like privy to you don't see all the steps, it takes the doctors visits to get bio certified and in the terms that Ellen Samuels talks about accommodations mean that you can be here and can be included, but only if we make alternate arrangements for you. We get called special, and don't call us that by the way accommodations mean, you'll be asked to prove yourself worthy to be disabled enough to be documented enough meaning that you know what your disability is accommodations mean extra work for institutions who have set up this network, this stages of paperwork and things. As well as for individual people going through the process accommodations are also the basement in terms of access and inclusion. They sometimes allow temporary access to a job or program, and this assumes it's all gone well has moved efficiently, and where you are trusted about your disability status. This doesn't mean that disabled people hate accommodations. It means that accommodations don't structurally change anything they don't make science more inclusive. They don't open the gates of the Academy for us. They don't make lasting changes to the way we as researchers and colleagues go about our business. They don't change to access and inclusion when everything is one off accommodations. You probably want a story at this point. Since I said I study stories. So gather around asynchronous viewers. I was once asking one of my mentors about how she got accommodated at work, how it was when she arrived at her current institution and she told me about arriving at her new job. She needed someone with an apparent physical disability. I needed some particular voice to text software so that she could type essentially to write all the papers and write up all the research and take notes and let's just say the software was important to her work. And she presented her documentation to the ADA unit before she even arrived in human resources at the time, and they agreed that she needed that software. She had a process of months of back and forth where she had to repeatedly inquire about the software, when it would be ordered, how to get it on her computer, which unit would be paying for the software. And this is where things got held up significantly where there was no plan for how to pay for the software package she needed. She was an up and coming star in her field at the time. She was incredibly slowed down her department share had been copied actually on a lot of this communication. And after months of her chair watching this communication. You know, they had a discussion and this researcher, of course, had a startup package, but that money is not supposed to be spent on assistive technology and you can think about how that might, you know, put disabled researchers behind their backs and they have to pay for their assistive technology and not the things they need to do their experiments. And the chair to this chair's great credit, recognize that this delay in getting the new faculty member and necessary work tool was going to impact her ability to write and publish the chair intervened and had the department software from the department budget, so that her new faculty member to get on with her research, no more going back and forth between units about the software and who might pay, no more discussion of it at all. This was for an accommodation that everyone agreed was appropriate, and which was well documented and kind of obvious, given her the physical nature of her disability. For something not really all that uncommon voice tech software is a pretty standard accessibility tool. It took about nine months into her new job as a tenure track faculty member for her to finally have that software. So we talk about this extra labor and the extra time the accommodations process takes we're looking at. We're looking at delaying people in their careers in significant way. So we often talk about the leaky pipeline. Yeah, when we talk about like other minority groups, but this is one where we can see where disabled people always start behind because of this accommodations So the thing is this, what my what my colleague encountered was not an uncommon situation and she was in a good position with a chair who was paying attention, and who didn't say well we shouldn't have to pay for that and go back and forth with assistive tech and HR some more. She was in a relatively good position right as a tenure track faculty member, not everyone can disclose like she did and I know graduate students who have had to retake retake to get retake testing to get the documentation they need. In order to be certified for with services for students with disabilities. And to get that testing. It took six months to get the testing and it costs $3,000 to get the educational testing she needed for a diagnosis she had had since she was five. She bombed her first semester in her engineering program. Because she didn't have the, the accommodations that she knew she needed that she had been certified in the past as needing. So she got the accommodations in place. She was a great engineering student, but the sort of lag, the extra certification. I know her GPA isn't what she would want it to be because it doesn't actually reflect her abilities. You know giving getting for her a little bit more time on tests, like makes a huge difference to her being able to take those tests getting more flexibility on time really mattered. She's held up way laid in a way so many people are and, and this is where leaks often occur in this pipeline. This is often the case for disabled students and researchers, but we're usually not tracked by university diversity initiatives are departures aren't witnessed. People burn out from seeking accommodations, or from being afraid of doing so because of what it will take, and always having the extra work of inclusion foisted back on to them as disabled people. I think sometimes about how it can feel to be held back on purpose, because of some of the barriers of work. Many disabled people feel like they're caught in a loop when it comes to accommodations processes, especially if you have disabilities that are variable. Right, so it's not constant sometimes you can do some things sometimes you can do other things I think about people with pain flare ups that shape their days. And lots of disabilities are variable even as an amputee. If my, if my hardware breaks, my leg breaks, I have to truck out to my prosthetist make sure he has the time, get fixed up I think about just the time it takes in terms of variability, just with something. You know, even if it doesn't cause me physical pain, what it means to get back on track when I'm way laid by maintenance. And this accommodations loop is what this is the term used by Margaret price and they are GRET PR I see, and others who have worked on what's called the disabled faculty study. I want to talk about the study for just a little bit. It is about all sorts of faculty not about science researchers particularly but I think it has a lot of good observations about how faculty are encountering different processes in our workplaces and that includes, of course scientific researchers as well. So this is a study that's been conducted over over eight years now. As disabled researchers working on disabled projects. They took a different view of how they were going to structure and have a timeline for the research. So this study is led by Margaret price, Stephanie Kurtzbaum at Delaware marks Salzer and Amber O'Shea a temple and involved anonymous surveys and semi structured interviews and it's sampled for maximum variability meaning they wanted diversity in their semi structured interviews. So they recruited interviewees for diversity. And they had themes of just themes that keep coming up for the people they're talking to our issues of disclosure, like negotiating whether you tell people you're disabled and how and when accommodations process and that's, of course, what I'm focused on the experience in time and this isn't unrelated to the accommodations process as might be apparent from my stories just a moment ago, and then, then looking at different forms of support the nature of barriers and differences and experience between different groups of disabled people and Margaret price. She's written and she has this piece time harms. And, and she says, although accommodations are often referred to as measures that level the playing field. This metaphor represents a dangerous misrepresentation. Close study of the accommodations loop her term shows why the loop is arduous to traverse must be traversed over and over again an exact exact costs, not only of time and money but also of emotion. The loop must be traversed by anyone seeking accommodations, whether they are quickly granted or fiercely contested, and perhaps most important the loop is almost always invisible to those not traversing it. She talks about the need of constant labor and bio certification that documentation. And then when people leave drop out the loop just closes. The disappearance of both the need for the accommodation the disabled person in any trace of its history. This is not structural change that we're seeing. She also talks about how institutional and here I quote institutional discourses suggest that waiting for an accommodation is a value neutral event. It might be inconvenient or frustrating, but if the accommodation is eventually forthcoming, and if everyone has good intentions, no real harm is done. Thank you that we must counter this assumption by recognizing a basic law of Crip space time. Time can cause harm, and this is her title time harms. So, what can we do when we think about our current situation with accessing inclusion and how many people think accommodations are how we should manage disability. You're going to lose a lot of disabled people if accommodations are the process. Not all of us have clear diagnosis not all of us can get documentation. What we need in some ways is to Crip the sciences and to Crip is a term that is so Crip is a word being reclaimed in the disability community like queer is and you see different people talking in queer studies about queering things. This is a similar term in disability studies about creeping things and Margaret price of course was talking about Crip space time. Elyon Samuels has also written a lot about Crip time, and it's about this sort of acceptance of disability and expectation that disability will be part of where we are what we go how we plan, and a sort of flexibility and approach to how we think about time in the case of Crip time. This, I think, when we're talking about creeping the sciences, we often have an idea that things are supposed to look one way, right that research follows a very clear path or plan. But even within the sciences there's a great diversity of course and in how science proceeds, and there's no one perfect way to be. Even if that's what we often think and what eugenic rhetoric has seeped into our brains and check sheets that we should look particular ways. We need to be open to honoring more ways of being. Sometimes that means changing our pacing and our clocks. We need to be more forgiving in terms of the attitude we have towards timing. So Crip as in Crip time or clocks move differently sometimes very quickly or sometimes intensely. Honestly this shift can go here with how we think about research projects to. I think about what this means in my own work with other disabled faculty. We have a disabled faculty writing group this year, and the university that I'm part of. We have this week on a Google Doc and opportunity is given to write together on zoom because of course we have immunocompromised people and we're not leaving anyone out. And we won't be writing it all in person this year because of the ongoing COVID-19 situation. But we're checking in on each other, checking in on writing but also checking in on sort of the barriers we're encountering and working with one another. And the sciences also like speaks to the flexibility that we see in the universal design movement and universal design for learning and it's really about fitting education, careers and institutions for wider variety of humans, not asking disabled people to make or break to preconceived moles. Of course this is beneficial beyond the disability community. And what we call the curb cut effect right curb cuts are used by wheelchair users but they're also used by people who have dollies and strollers and other real implements to get around in various locations. And I think disabled people work for more than just the disability community. And what I'm suggesting is when we encrypt the sciences, it will do that too. I think also of the way in which crippling the sciences means letting disabled people work against some of the things we've been doing wrong in the sciences and allowing critique where disabled people are not well regarded within science. And the way in which produce rule Williams are you a W I L L I am s critiques the field of human computer interaction, and specifically robot development aimed at autism interventions. Sometimes the experiments she critiques literally scare children. Sometimes we're describing how the children react, don't necessarily realize that that is a scared response from autistic children like Rua, and other autistic researchers can. It may mean that we have to shift avenues of research when we recognize harms to disabled people. We have to also think about institutional change in terms of taking the opportunities were given to make things more accessible and disability friendly. So think of Martina swantex work and a R T I N A S V Y a N T E K. I think about her work on my own campus, which sticks out to me here. Dr swantex did a deep dive for her graduate work on institutional policy documents over 25 to 30 years here, where accessibility seem to be an afterthought. We were going to master planning sessions for the current such like, like a few years ago, and even the master planning sessions where they said they were soliciting feedback from the community were often in inaccessible spaces with bad acoustics. At one point Martina was attending a session, and she had to stand, because all of the seating was on like stools that could move around. Lots of people in the disability community, high schools that move around are going to hurt your back impact your sense of balance. There's lots of reasons high schools are a bad thing. And, and, and ironically, she was also reading all of these past master planning documents, and every one of them mentions the sentiment, and in fact she is back to 1983. The master planning document mentions that all new construction should be working to make things more accessible, not less. And 30 plus years later, we were still seeing this in action, even as they were soliciting feedback. It was clear that they haven't thought about disabled audiences. In that year, Dr swantech and I had participated together with our campus disability group in an event to withdraw attention to newly constructed steps to replace old steps, where they had the opportunity to like knock down several buildings they rebuilt those buildings the steps were supposed to go through. And there were no ramps that they install the way around the building was actually blocked for a long period of time by construction fences, no way to get through. You could be a wheelchair user or if you can't do steps. You would actually have to go into a different building, hoping the building was open at the time you need to transfer first campus and use an elevator. And this is still mostly how we access that space, because the pathway along the accessible route is so much longer. I'm still, and this was a few years ago. They made decisions they didn't take opportunities to make things more accessible, even though they keep talking about this commitment. We need to think about flexibility and use this is one of the principles of universal design, but it's something we need to elevate in value, especially as we design laboratory spaces and research projects. When you think about the variety of people, you could have work on a project we should think about how, how to make these things more flexible for us by different types of people. So I'm structural, by which I mean physical structure changes to laboratories at times, but also thinking about this in terms of programmatic work. And we should be listening to those doing the feminist work of complaint. This is a term from Sarah Ahmed around disability issues in our research spaces in our program so when it comes to programmatic barrier removal. So how about how we do prelims and comprehensive exams for for advanced degrees how we do this matters. Are there multiple ways to do it or only one route. So I think about this with particular students who have encountered this barrier and might not have been able to get accommodations, we can build programs that allow exams to be taken in multiple ways. So many times our comprehensive or preliminary exams involves sitting for eight hours a day. Days a week for two weeks to sit and answer questions. I've thought about, you know, I encourage my students, not even my disabled students all students to negotiate. Like what it is going to look like to do their exams there's some flexibility in the program that that I'm part of because we have a lot of non traditional students. You know with families and day job so we can't always structure prelims and comprehensive exams, assuming people have two weeks to sit quietly in a room. And then, and there have been times when we've restructured instead of two weeks in a room. It's, there are three sections to the prelims in my department, but this exists for a lot of different programs. We do a section at a time with breaks in between. It's the same questions, the same amount of time, just divided out specifically on your question areas it doesn't change any of the regular exam, but it allows for more people to do the work, which is ideally what we want to make accessible and inclusive it's not, it's not that any requirement has been changed unless it's a requirement was a physical tech test of whether you can sit in a room that's not really what we want. Right. And I think we also have to ask ourselves what are we requiring in terms of leg work. I think about all of the extra steps to paperwork to different degrees and various work processes that can be simplified. We shouldn't ask for more information we need. We think about this in our scientific research when we do survey methods, but we can think about this and turn it inward on the work we do are you know what are we requiring. Are there forums that can be simplified processes and paperwork, not even just disability paperwork that can be simplified. And also is there like a clear map for people on which paperwork happens when I often find that this is where students who are coming up in the sciences struggle, particularly students with disabilities who have may who may have executive dysfunction and filling out paperwork itself right they're doing their good engineering work they're doing their good science work, but filling out these forms, but they'll encounter once each, you know can present an extra barrier so I often ask my colleagues like, can you fill out the paperwork. Can you set up the assistive tech do you know how. Do you know how to book your ASL interpreter. Do you know how to get braille ordered. If you have someone requesting braille do you know which offices to even go to. How do you figure out these things right this is the work we're always placing back on disabled people but it belongs in our hands. As administrators as supervisors as mentors to be ready for these things to I have literally filled out the paperwork for a number of disabled students who just couldn't finish paperwork. I see the paperwork a lot as someone who serves on on various committees and it doesn't cost me nearly the time it will them and the time and stress of filling out that paperwork and it's easy right the barrier. Is one that was unnecessary to begin with it doesn't change anything about what the students knows or whether they're a good scientific researcher. I also think about this and this is my last slide about mentoring and community in the disability world, we exist better with rich disability communities as a reference and a resource to know how to navigate processes to sympathize with one another to tell hilarious stories and have the last the release of laughter with one another when we're encountering ridiculous situations. It's a place to engage in cross disability understanding and solidarity with others. The disabled artists collective sense and valid talks about how none of us lead one issue lives. And so our community shouldn't just be about disability when we gather as disabled people, but all sorts of barriers that people encounter and mentorship in the disability community looks different. It comes in different directions. For me, I acquired most of my disabilities when I was 30 I'm a part of hearing chemo brain amputee with Crohn's disease and tinnitus. I love the sign language interpreter catch up. You know, bingo, I've got the card. And most of these disabilities I acquired at age 30. And one of my early disability mentors like into what it was like to be disabled as a professional to be on campus with someone who had became, came disabled many years before me, but was also an advanced PhD student in another department, and a little bit younger than me and with her and others we formed this disability Alliance and caucus on our campus, and I was learning from students and staff members at the time who were my elders, in terms of being disabled. You can be a much younger person and be a disabled elder and mentor in ways that speak to crypto time and crypto space that we already diverge from normal constructs of time. Even when it comes to mentorship and advising sometimes to this can be hard for newly disabled people to take advice from people they see as junior or lower to them in a hierarchy. But when it comes to learning the lay of the land in which the land maybe newly hostile to you. This is an incredibly important part of our community, and a way to think about how we mentor each other as disabled people as researchers. I know when I became disabled I thought very seriously about quitting my job. Every time I came to campus. It was so hard to get to my building. My building doesn't have an elevator, I was moved downstairs. So every time I went to my office, which I had partially moved into and started unpacking. And then they change up space in my department, and I was still too sick to come in. I was a medical leave for a while. And they told me I the office I had just moved into was being was going to be taken by another department and they had a different office to move me into. And one of my graduate students packed up my whole office and moved to the other office at that point. The kindness. Shout out to Keith. I know that was something that was shown in that. But it was hard. I was also young enough as a disabled person that I was stared at on campus, right I was on double crutches. I was bald, right and most of my disabilities were acquired, due to cancer and chemotherapy. I was just, I completely hostile and new world, and I was lucky to have a few other disabled people on campus, Martinez long tech, Jenny Dick Mosher, who, you know was the PhD student other department who was filling me in on how to do things here. This was even outside of accommodations this was just to go to my office. And I think a lot of people. Even with the slog it's a really important to understand that other people are facing that too. And to have different hacks around that they've thought about, and to be learning from one another and I'm still learning from the disability community from Dr. Oh, from other people where I am and at other campuses. And it's really important to keep paying attention, even to each other as we do disability work. So, thank you. I look really forward to doing this less asynchronously and having a discussion with some of you. Now, if you're watching this in two weeks. Alright. Thank you so much. Oh, and I'll give you my slides. In the chat when we're actually live together but I have a whole bunch of resources at the end of the slideshow with links. In case if anyone wants to delve further on any of these issues. Thank you so much.