Shelby Acteson Part 2: How we make the world more accessible
In part two of our conversation with Shelby Acteson, we dive deeper into Shelby's work to correct the ablism that is embedded in our systems and how we make a more accessible space for everyone. Undoing the processes, procedures, and policies is what we need to do to move forward, and that starts with changing the philosophy of how we approach these issues, Shelby provides amazing tangible solutions throughout this epsiode.
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Our Host
Ari O’Donovan
Transcript:
Ari O'Donovan: (00:00)
Welcome to part two of our conversation with Shelby. If you missed part one, go ahead and take a listen to that previous episode as we pick up right where we left off. Are y'all comfortable? We hope wherever you're listening to this, you're comfortable. This show is for the Bipoc communities in Oregon hosted by a black woman about the amazing work we do every day in this state. So let's build together, connect with our communities, add some laughter and humor even when it's a difficult conversation. Let's boost our voices
Shelby Acteson: (00:36)
And we have all these people who have different ways of being and different ways of being in the world and navigating the world. And we need to make the world that we create accessible to all of them. And it's on us. There's nothing wrong with you. We didn't build this building. Right. So you can get in. It's that simple.
Ari O'Donovan: (00:56)
Can you tell me a little bit of what you've done at Harvard and O H S U?
Shelby Acteson: (01:01)
Well, I actually started my work in accessibility at O H S U. Came up through kind of the educational piece. I was an instructional designer and worked with faculty to put their courses together and do curriculum development. And was actually working on a federal curriculum for health information technology that needed to be retrofitted to be accessible after they created it. Talk about, you know, hey, we created this great curriculum, it's really needed nationwide. It was sent out to 82 community colleges and and then went, oh should be accessible. And, and by law it had to be because it was federally funded. So it was kind of a circular thinking and how did we miss that and now we have to do it. And we did it. And that was my foray into accessibility in terms of making lectures, online lectures, it was all an online curriculum making all that accessible for the people that we were serving.
Shelby Acteson: (01:58)
And then I fell into this other position, , I uh, work with the student access office. I was doing student learning support at the same time so it made sense to branch off into that. Um, but at O H S U when I started there, the accessibility role was a part-time role. It was half-time. And if you think of the number of students going through those programs, just because they're studying to be a doctor or a nurse or doing research, um, it doesn't mean that that people with disabilities shouldn't be in those spaces. Making contributions to that work and having access to that information to follow that path. I managed to convince the powers that be that we should branch off that learning support piece and take accessibility and make it a full-time gig and see if we could really be impact and expand the number of people that we are serving.
Shelby Acteson: (02:52)
Because the numbers, you know, you look at the population in general, it's about 25% of the population has a disability and it might be lower as you go into certain programs, educational programs. But we were not seeing near that amount of students coming through our doors for accessibility requests. Again, a lot of that had to do with stigma and bias. You know, doctors don't have disabilities, right? And there was a lot of education that went around that and a lot of relationship building and, and discussions around why people with disabilities should be in these programs and should be serving our populations as healthcare practitioners. So that was really exciting. That was my first taste of wow, how impactful this work can be. From then I went to Harvard and I was in a central administrative role, but I kind of walked in with some other contacts I had in the medical sciences field and really was able to forge a fantastic relationship with the school of medicine there and work with them to rebuild their disability services office, if you will.
Shelby Acteson: (04:04)
And to increase significantly the amount of students that felt comfortable coming to that office to request accommodations. For me, that was really exciting to follow that through. We hired a really fantastic person to run that office and, and I worked really closely with some of the students who were feeling like they didn't have enough support and they really were spearheading this and it was great to be able to make sure that their voices were heard and that process, cuz it is about them. But the work I did at Harvard was in general was much, much broader than that. It was in a central role over all of the 13 schools at Harvard and each was at a school in and of itself and it was very decentralized. And so my work was bringing people together who were on the ground doing accessibility work in those and providing resources and connecting them to each other, which was so important.
Shelby Acteson: (04:54)
It's like, oh wait, you've accommodated that at the school of business, so we're not doing that at the law school. I'm like, well , let's talk about that because in general kind of overall archingly we need to have a consistent approach to what we're doing. So a lot of my work was that. But I was also able to work with people across the entire institution and, and get some interesting collaborations and projects going. One of them was a small internal grant that we got to increase accessibility in science labs and Harvard is full of research science labs and you know, in addition to the educational piece, the science labs where students are learning and obviously you know the medical school there as well. You know, they've got labs that they're working in and, and so I worked with a group of people who probably wouldn't have met otherwise cuz they were in such different fields.
Shelby Acteson: (05:52)
You know, one was a research scientist himself, one was a, at the medical school doing other kind of work in the labs. Oh doing practical work in the labs with students. So we connected all those people and created a curriculum for managers in labs so that they could start independently low cost, being more aware of how to make their labs more accessible using universal design principles. We did have a little bit of money to give them to maybe purchase some standing desks or adjustable chairs as a start. But it was really about the education piece and recruited a lot of people to do that. That was super exciting. I think a couple other projects I did at Harvard and, and I won't take too much time, it, it was a fantastic experience. It was really operating on a much broader realm. But we did a lot of work with HR and the diversity and inclusion folks to integrate accessibility into HR onboarding, into required trainings into the diversity space.
Shelby Acteson: (07:00)
Spent a lot of time looking at their curriculums that they're putting together and where can we insert this and where can we be included? And, and that was very new for Harvard, like it is for many institutions. But it was really exciting and I think we made a lot of progress. There's more progress to make but we really did have a seat at that table and could represent people with disabilities in so many different conversations across the institution. So it was really exciting. I'm trying to think. Okay, we have one more project which was really interesting. So Harvard is a, a vast campus. It's very old. There's lots of historical buildings, there's lots of historical imagery and statues and artwork and you know, orchards of people on walls and museums and there's a lot of visual imagery. And I was part of a task force that did an analysis of all the visual imagery across the three campuses that made up Harvard all across the city.
Shelby Acteson: (08:02)
And the impact of that was having on diverse people. When you walked into one hall, there was a wall and all of the people on that wall were white and they were all the leaders, the historical leaders of the Harvard University. And they were all white actually. They were all white men in an adjacent room. There were statues of all white men, things like that that were very, very obvious that we cataloged and identified. And then there were things that weren't so obvious just the way that, for example at Harvard they don't have dorms, they have these things called houses and it's much like Hogwarts , you know, and Harry Potter, I kid you not. So they have these houses and you belong to a house for the whole time you're there. And there's a culture in each of the houses and each of the houses have traditional regalia that they put on and identities.
Shelby Acteson: (08:55)
And some of those identities were not necessarily say politically correct because they were historical and they came from so far back. But those played into this kind of visual imagery cuz they were crests and there were things in these houses representing the historical identity of those houses and perpetuated by the alumni cuz if you were in that house, you're in that house for life. And it was very interesting culturally. And so kind of really looking at cultural imagery and how it impacts diversity and how it impacts whether that campus is welcoming to people who are not white men. You know, they only allowed women at Harvard, you know, a couple decades ago they were in another school kind of off to the side. So it was a very interesting project and they did come up with a very large remediation plan to start exploring how to explain first of all how these things got here.
Shelby Acteson: (09:59)
And it was very tricky cuz how do you balance the historical framework upon which an institution was built? And some of it wasn't good, some of it was based on slavery, some of it had other connections to things that were not positive, but that's your historical foundation of your institution. So how do you balance keeping that? Cuz it did contribute to how that came to be today with being sensitive to how that is impacting people who were negatively impacted in the formation of that institution. It was fascinating they were putting together the plan as I was departing to come back home. But it's work like that. And there were people from all over the institution from so many different perspectives and you know, the amount of faculty on that group too who had the historical knowledge and a different framework to, you know, a student walking across campus going man that building gives me the creeps. You know, so it was really fascinating. I think it was, it really provided me with a much broader scope on the work that I do and also really kind of brought home to me the the physical accessibility of spaces and how those spaces make you feel.
Ari O'Donovan: (11:21)
Yeah. That is such important and impactful work. The Harvard has a long way to go it sounds like with the way that they are the things they have for students,
Shelby Acteson: (11:34)
You know, I'm using their that as an example because I was part of that institution. But you know, talking to colleagues across the country, you know, all high large institutions of higher ed, especially some of those large private ones are having to reexamine their private history because it's becoming public in this digital age and this age of information that we have. I think it's just very interesting because there is an evolution happening about history of institutions and what is our foundation that we stand on to do whatever your institution is or an organization or a business. You know, there's that historical piece is important to people and people are able to find that information out. And so now how are you going to respond to that and address it and I guess start to amend, not amend your history but look to adjust your practices going forwards based on your history. It's something that all organizations are dealing with and it's challenging. It's very challenging cuz you still have to run your business or teach your students or you know, whatever task your organization is is there for. And yet you still wanna make sure that all these other parts and pieces are in place. Because if it's not accessible, if it's not inclusive, then you're not going to be serving all of the people.
Ari O'Donovan: (13:11)
It's important to do that reexamination for schools, for businesses, everybody should be doing that. Reexamination, I, it might be uncomfortable, it might lead you in a direction you don't wanna be in, but you have to do it so we can be more inclusive so we can make things more accessible and give people opportunities who deserve them. Yes. And should be able to have access to them.
Shelby Acteson: (13:38)
Yes, yes. And make sure that we're not leaving any voices out of the conversation. I think, you know, that's, there's just, there's, there have just been so many voices that haven't been heard. And back to digital accessibility for everyone, not just people with disabilities, but information really does provide people with more knowledge and more of a voice in so many different realms. And yes, sometimes you know, people are using their voice on, you know, I'm thinking of Twitter comments and things like that, you know, where people have not put some boundaries around how they're communicating out, but people are still feeling like they can participate in those conversations and to express themselves without barriers. It's not my role to judge what people have to say and how they're saying it and, and more people are expressing themselves. So that's a positive. I think there's, you know, I'm old school probably need some more manners out there but, but communication is happening and people are, you know, feeling freer to say what they feel and bring up what they see and ask for things to change. So
Ari O'Donovan: (14:57)
I think it's a step in the right direction. I
Shelby Acteson: (14:59)
Really do. Yeah.
Ari O'Donovan: (15:01)
Can you share some information with us about your philosophy surrounding the social model of disability?
Shelby Acteson: (15:08)
Traditionally most instant institutions and our medical system is used what's known as the medical model and the medical models. There's something wrong with you and you need to fix it, you need to heal yourself, you need to get better. It's on the person with the condition if you will. And there's more than just the medical and social models of disability, but those are kind of the two main ones that folks focus on. So the medical model of disability is pretty prevalent still. It's used across the board for getting your disability benefits, for getting your VA benefits, for any kind of governmental interactions around disability. And it's basically, you know, alright, prove to us that there's something wrong. It's all on you. Show us the documentation. This is how much credit we're gonna give you for how disabled you are. That's just how the system is built.
Shelby Acteson: (16:04)
Now the social model is very different from that. And the social model is predicated on the fact that there's nothing wrong with the person. We haven't created a program or a service or an environment for that person to exist in. So the burden, instead of being on the person who has a need, the burden is on those of us who are tasked with creating programs and bringing folks together in spaces to make those spaces accessible. And so it really flips the burden because there's such a high burden on people to disclose a disability, to get proof. You know, they've gotta go to their healthcare providers, it has to be in certain language, it has, you know, depending on who's asking for it. There's all kinds of paperwork, there's all kinds of steps. There's approval like your disability has to be approved, which is not how we're thinking about it with the social model in terms of this is who you are and this is a person, you know, and we have all these people who have different ways of being and different ways of being in the world and navigating the world.
Shelby Acteson: (17:20)
And we need to make the world that we create accessible to all of them. And it's on us. There's nothing wrong with you. We didn't build this building, right, so you could get in it. It's that simple. There are some institutions that are looking at the social model. I have to say that it isn't an either or situation. Some people are like, oh, we need to get rid of the medical model completely and we only do the social model. But even if we are completely proactive in organizing our spaces, I don't feel like there's any way that we could anticipate every need of every person. There always needs to be a space for a reactive piece where people come to us and say, I need this. You know, we can do everything we can to make a use universal design accessible practices to make a space and a program accessible.
Shelby Acteson: (18:15)
But there's always gonna be exceptions and a big piece of the medical model. And this is a piece that gives a lot of people with disabilities grief. And I know it does. And there are parts of it that I would like to make adjustments to, I guess . But when people are asked to provide medical documentation of their disability, some people look at that and go, oh, okay, this is your diagnosis. And then they use their stereotypes to go, this is your diagnosis and this is what I think should happen happen. But when I'm doing the interactive process with folks to figure out what we can make adjustments on, I use that medical documentation to go, oh wow, okay, so this is a barrier that you're coming up against because of your disability. How does that translate to our space here and how can we fix that?
Shelby Acteson: (19:06)
And sometimes folks, especially if they're newly diagnosed or they're just becoming more aware of their disability or aware of their condition that might qualify as a disability, they haven't looked at what adjustments and changes could be made. They just know that they're having difficulty with the space and difficulty with the program or difficulty with the format of communication. And so that medical document that is a piece of that medical model is really helpful for some disability providers to go, Hey, did you think about this? Or, I noticed that this was listed and let's explore this. And so I don't think that's ever gonna go away and our whole medical system is predicated on it. And so that's not gonna shift. But I am seeing a shift to integrate more social model thinking and more universal design so that we can start giving tools to people to be independently accessible.
Shelby Acteson: (20:08)
Here's some practices that you, here's how to make an accessible document. If you make this document accessible, then we can post it on our website right away. It doesn't have to go through a third party in order to get it remediated and accessible before somebody can access it so faster from point A to point, you know, to your target audience. So there's tools that we can give people to be proactive. There's ways that we can build environments, there's ways that we can conduct meetings. So all these other things that we can do on the kind of general social model, universal design accessibility piece while still operating within this medical model that we're kind of stuck with. You know, it is what it is, but what can we pull out of it that's useful and how can we break down the barriers of that model puts on people and the attitudinal things that come along with that medical model and replace that with some of those social model things about, you know, what, what can we change about what we built so that you can get in here experience the same way.
Shelby Acteson: (21:14)
Because every individual can make their surrounding space accessible, their documents accessible, their meetings accessible. If every person does a small part, then you're gonna get some critical mass to start to actually shift a culture of processes and procedures that have ableism baked in. And part of that, learning these tools and learning these new skills is understanding the why and connecting it to an experience that a person has so that they can then get on board with what's being done. I really think it's important to help people find the why, otherwise we're not gonna get very far with this. It's gonna be a big plan and four, you know, three ring binders sitting on a shelf somewhere that doesn't get, you know, referenced and it doesn't move anything forward and it doesn't create a sustainable practice. I really feel that we do need to lean into the social model and becoming more prevalent and becoming more utilized across some of the institutions that I've worked in. And you know, we really tried hard at Oregon Health Authority to educate people about the social model and and to try to shift the thinking. You know, some people think the ADA is the ceiling, oh if I do exactly what the A d A says, then I'm done. Whereas I think of the ADA a as the floor, it's the bare minimum, let's get that done and then let's add on all of this other accessibility because it's the right thing to do. And that's a shift. That's a really, really big shift.
Ari O'Donovan: (23:04)
Absolutely. And I really love the idea of the social model. If we're going to have both the social model and the medical model, I'd like to see a predominance of the social model. I think it'll be a better outcome for everyone.
Shelby Acteson: (23:20)
Yes.
Ari O'Donovan: (23:20)
Yeah. Um, it'll take a lot of shame away too. Yes. From people feeling like a disability. Yeah. Or their lived experience, they should be ashamed of it. It's the problem,
Shelby Acteson: (23:30)
It, it's
Ari O'Donovan: (23:31)
Something that this is my problem and I need to do something about it. We have got to get away from thinking like that in society. It's, it's a structural problem. It's a societal issue that we can do something about. It's not just all the burden of the person experiencing whatever's happening to them.
Shelby Acteson: (23:50)
Exactly. Well that's back to that systemic ableism, systemic racism, it's integrated into all of the processes and procedures and policies. You know, over time leading up to, you know, right now looking at, you know, looking at it and trying to move it forward. People have been putting a lot of effort into moving things forward for years. But it does have to get to a critical mass. We do have to have practices that we can offer people to change. You know, changing a philosophy and changing the way of thinking is very difficult without giving people something tangible to make change. I did a lot of work at O H A with inclusive language and I hear every once in a while words come out. I'm like, ah darn, don't say that. But you know, we want people to be invested in this work and if we can help them integrate one accessibility practice into their daily workflow and it benefits somebody that they know directly and that person comes back and goes, oh thank you. That made it so much better. I could participate in this so much more and I felt like I belonged. And then boom, we've got another champion of our work and we keep collecting those people along the way until we get to this critical mass where the culture starts to shift.
Ari O'Donovan: (25:16)
That's really what you need more champions of this work like you
Shelby Acteson: (25:21)
Absolutely.
Ari O'Donovan: (25:22)
Absolutely. Others out there to encourage other people to get on board, to understand, to find the why, to see how it connects to them so we can make everything better for so many people that have been left out unfairly left out. And I think it starts too with learning about mm-hmm , why this is important and some of the facts where we are historically and how where we can go in improvement. Can you tell listeners where they can learn more about you and ableism?
Shelby Acteson: (25:55)
Well, in terms of ableism, I have couple resources. One is called Project Lets L E T S and perhaps we can provide people with that link. And basically it has a collection of resources around disability justice, which is really the crux of the why we you people really need to understand about disability justice and the work and the struggle and the effort that went into the ada. A even coming into being is absolutely compelling to learn about. And I, I can't imagine it wouldn't be impactful for so many people who don't, who've never read those stories before and who haven't been exposed to that. And then there's another website called Roots of the Same Tree. It's actually a podcast series and it is about the intersections between ableism and racism. So I think that would be really helpful for folks to make those connections. I may not have been as eloquent as people who are bringing lived experiences to those stories.
Shelby Acteson: (27:00)
So I think that would be a great place for folks to start for some resources on that. I can be contacted directly, obviously through my email. I'm also on LinkedIn if you wanna dive a little bit deeper into the work that I've done previously and all my other positions in accessibility. Quite some detail, probably more than people need, but I'm also available as well for in organizations to consult for around accessibility and how to bring accessible practices to their work. And it's just something I enjoy doing and you know, I'm very much about not giving somebody a box of fish but teaching them how to do it themselves. Empowering them to be part of the change and part of the shift in the way that we think about people with disabilities and how we create our world to be inclusive of everyone, including people with disabilities.
Ari O'Donovan: (27:56)
Most definitely we will include all those links and how to contact you and find you in the description. And I think if anyone needs a consultant that knows a lot about disability and accessibility, you are their girl. For sure.
Shelby Acteson: (28:14)
. Well thank you . I think there, there are plenty of other people out there, but I sure would be more than happy to chat with people and walk them through it, talk it through it, however we wanna get through information to learn more about it.
Ari O'Donovan: (28:29)
Outstanding. You've shared so much great information, I learned a lot, I learned so much during this podcast. I know listeners will and I'm so glad that I got to talk to you, Shelby, thank you for being on my show.
Shelby Acteson: (28:44)
Well thank you for the opportunity. I really appreciate, it was super fun. So
Ari O'Donovan: (28:49)
Wonderful. Everybody follow, find out more about Shelby, check out the resources she talked about. They'll be in the description, learn more about this. It's really important and the only way that it's going to get more noticeable and people getting more focused on making changes is for people to know more information. So we gotta start there.
Shelby Acteson: (29:10)
Exactly. Exactly. Excellent. Excellent. Appreciate it. Appreciate it a lot.
Ari O'Donovan: (29:17)
Thank you. And that's all I have for you guys today. We'll see you on the next episode. Thanks for listening to this episode. Came bringing the community info without the community. Appreciate you showing up. If you wanna reach out, hit us up on IG at boosting our voices or at our website, boost oregon.org. Keep doing great things, keep uplifting one another and we'll do the same. See you next time.