Shelby Acteson Part 1: The Intersection of Ablism and Racism in Oregon
In the first of a two-part series we deep dive with Shelby Acteson her 10+ years of experience guide us through how these issues intersect, issues of accessibility, and the all-important understanding of the why and how it connects to you.
If you're looking to better understand how Oregon can be better for everyone, this is a series you won't want to miss.
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Our Host
Ari O’Donovan
Transcript:
Ari O'Donovan: (00:00)
This week's episode of Boosting Our Voices will be a two-part episode for y'all with our fabulous guest, Shelby Acton. Part one will release this week and part two will be released the following Wednesday. Thank you so much for listening to boosting our voices. This program has been brought to you by Boost, Oregon. You can find them online@boostoregon.org g,
Shelby Acteson: (00:26)
And I think that's what we hope for in all the work that we do. Whether it's, you know, dealing with systemic ableism or systemic racism or any other form of discrimination. How can we get individuals to understand the why? Why is that a problem? Ah, light bulb. And then we can take that and build upon it with education and information.
Ari O'Donovan: (00:52)
Welcome back y'all. My name is Ira O'Donovan and I'm Boost Oregon's Diversity program manager and your host of boosting our Voices. Today we have Shelby Eson with us. Tell me and listeners a little bit more about yourself before we get into the real discussion.
Shelby Acteson: (01:12)
Great. Well give you a little background on my work and accessibility and so I've been in this business for about a decade and then some, I started here at O H S U, Oregon Health and Science University and then moved back east to Harvard University. That was quite the experience and recently returned and just finished a temporary gig COVID related at Oregon Health Authority. And in addition to my accessibility work and I got into accessibility through education, having been a teacher way back when and in the middle of there I worked in nonprofits and was director of development for quite a few arts and educational programs and also reproductive health organizations. A bit of a broad background. Personally, I'm super happy to be home. I'm from here, so really glad to be back in the Portland area and close to my family in France.
Ari O'Donovan: (02:07)
That's amazing. You've really been doing a lot of really great work. So I'd like to know, can you tell us a little bit about policy and procedures that are related to accessibility? What noteworthy changes have been exhibited in the last decade or more?
Shelby Acteson: (02:26)
Well, in terms of policy and procedure, typically what people are familiar with is accommodations. And accommodations are when we make adjustments or modifications to a way of doing things to level the playing field for people with disabilities so that they have equal opportunity to be successful at work, to learn, to attend events, to participate in public functions. And so policy and procedure is based on the ada, the American Disabilities Act. And unfortunately the A D A was written in a pretty broad way and it's up for interpretation on many levels. So we use that as a guide for putting policy and procedures together. But things have evolved, obviously because our world has evolved. So some of the biggest changes that I've seen in the 10 plus years I've been in this business, and you all probably are very familiar with this, is digital accessibility. You know, 10 years ago we did not have to worry about whether our websites were accessible on a broad level and we didn't have to worry as much as to whether or not our documents were accessible or if we are using inclusive accessible language, you know, part and parcel of digital accessibility.
Shelby Acteson: (03:46)
We've also seen kind of a parallel trend of diversity, equity, and inclusion efforts, which have really changed not just our world and how we do business and how we move in the world, but it also really impacts people with disabilities because traditionally people with disabilities have not been included in that diversity discussion. Back to kind of changes that I've seen, the digital accessibility is a real big one, and especially with coming out of covid, digital accessibility was really at the forefront so that we can ensure that people had the information that they needed to get information about vaccines and to get services and get out and get tested, and how do they navigate that system if it's not created in an accessible way. And we'll get to that more. I think we've got some other things to cover around how covid really impacted accessibility for folks.
Shelby Acteson: (04:43)
A couple other things that I've seen along the way, we really are having to be more mindful about products that we choose to use, especially digital products because they're not all created equally and they're not all created with accessibility in mind. And so a lot of organizations are now looking at the whole procurement process to see if we can be proactive in what we purchase and what we utilize. During covid, it was great. People were being so creative and really trying to, oh, we could try this app or we could try this other way of communicating. We could try to connect with people on these different levels. How do we be social when we're all isolated? And so there was a proliferation of these very creative ways that people could connect, but many of them weren't created with accessibility in mind. So we were able to connect a lot of people, but 25% of the population or more has a disability.
Shelby Acteson: (05:41)
And so we may have already excluded those people from this movement for digital communication and for connecting people during covid. Another big piece that I've seen since the ADA amendments were passed in 1990, it seems a long time ago, but it really expanded the definition of disability so that chronic health conditions and mental health conditions are covered by the A D A. And that has really expanded the scope of what people on the ground providing disability accommodations are doing and how we're assessing our workplaces, our educational environments, how people are coming into the public spaces, because chronic health and mental health conditions, that changes a lot about how we adjust our spaces and adjust our communication.
Ari O'Donovan: (06:33)
That's really phenomenal. There's been so much change and some people might hear about those changes or read about them and say, wow, I feel like we should have been doing all these things all these years. And it's like you think about that in the same way you think about changes to improve the quality of life and things for bipo communities, for women access to resources that white men have always had. So accessibility is a similar thing where it's like, yeah, we have these things now, but it's because a lot of work has been done. It's because people cared and it's because people decided this is a problem, let's do something to make it better. And what you were talking about with the COVID 19 pandemic and how we had all these new digital resources, people were taking classes online more working from home, and you would think that it would open up resources for people that needed more access when it comes to accessibility and have disabilities and things like that. But it wasn't quite at the same pace. Mm-hmm. with other people that didn't need those resources. Mm-hmm. and it should have been
Shelby Acteson: (07:44)
Exactly, exactly. But on a positive note, so many folks with disabilities or who maybe just lived in a rural community weren't able to get out and get to a meeting. So many people were included because we had to move to that digital format for meeting, you know, public meetings, all, all the workings of government, all of that had to move onto a digital platform that everybody could get to. And so there was some gap bridging there. And students could work from home, people could work from home. But when the pandemic came to an end or, and I guess, I don't think it's truly at an end yet, but I think that many people were like, oh, I just want it to go back to the way it was. Let's just make everything and go back to the way it was. Let's have everybody come back to the office.
Shelby Acteson: (08:39)
Students need to be in their seats. And we forget that there were a lot of good things that came out of the changes in the way we communicate during the pandemic that positively impacted people with disabilities and other populations as well. And so the idea that we're gonna go back to the way it was, we need to continue to move forward and to take those positives that we learned and continue to apply those, we have to look at a different model. We can't just go back to the way it was because our world is different.
Ari O'Donovan: (09:13)
It's very, very different. And I don't really wanna go back completely either. I want people to have access to Yeah. Things they need, right? So that they can participate and interact in the same way that other people do in a way that makes sense for them. Yeah. It's just like, are we going to now go back to not washing our hands as frequently , because Covid 19 is more under control now, so therefore we don't need to take these kinds of precautions and sanitizing surfaces so frequently. Like no, I should kind of keep those though,
Shelby Acteson: (09:45)
Right? , right.
Ari O'Donovan: (09:46)
Just like we should keep the progress we've made. So can you tell me about some proactive policies that are now in use?
Shelby Acteson: (09:53)
Absolutely. There has been a huge shift in probably the last 10 years in digital accessibility. People are having to be more proactive because any organization that receives federal funding has to be providing accessible communications. And if we're all using websites and we're all using online registration systems and we're all using our phones for everything that we do, that's digital communication. And we have to be proactive about building those systems and how we build them. And being mindful that if it's on your, your digital screen and you think people can access it, that's one thing. But does it translate to your phone? Does it translate to your iPad? And so digital accessibility has moved a lot in the last 10 years. But I have to say that a lot of that is because of lawsuits and complaints and grievances. And unfortunately that's kind of how things change in the disability world.
Shelby Acteson: (10:59)
There are many amazing advocates doing disability rights and they have been from the beginning of the whole disability movement to get disability rights and the ADA on the books. But those advocates have to work so hard to be heard. And the law's been in place for quite some time now, quite some time decades. And people think that they don't have to do anything else. Oh, the laws in place, were good, you know, people with disability have the law, but really we have to continue to evolve. And I think that's probably, you know, a common theme is just because there's a law in place doesn't mean that it is stagnant. And we are operating from when that law was passed decades ago. Our world has changed. Digital accessibility has changed. A lot of lawsuits came about with digital accessibility, um, in the last 10 years. And there were so many, the government Department of Justice stepped in, did some, you know, did some analyses, was doing visits to universities.
Shelby Acteson: (12:06)
I was in universities at the time and they were really trying to figure out what the problem is and how it could be remedied and what was the ADA a really saying, you know, how can we apply this law that didn't have anything to do with digital accessibility to our practices today? So a lot of institutions now have digital accessibility policies. Oregon Health Authority, I was just working on putting together digital accessibility policy for them with an emphasis on that procurement piece so that we could start making sure that those products that we use, those platforms that we buy are accessible. And so I think that piece has really come a long way. And you know, there are standards and national standards in place for how to build websites. There are specialists on how to, you know, people who are engaged and doing that on a daily basis.
Shelby Acteson: (12:59)
And organizations are feeling it, you know, feeling the need and the necessity to get people on board to make sure that they are being compliant. So that's all good. We're not there yet. We're not there yet, but we're getting there. And that's a huge change from when I started in this business. And accessibility digitally had nothing to do with what we were doing. So a few other proactive things going on that I really feel are important to kind of moving the dial one is kind of this process of onboarding people into employment. And the same thing goes for onboarding students into higher education program or bringing people into a new space, if you will. Whether it's a digital or in-person, social or educational employment. The whole process of bringing people in and orienting them to, in a new environment, we can do a lot better.
Shelby Acteson: (14:01)
It's one of those things that isn't really kind of part and parcel of here's how we set up accommodations and here's what you need to know about the ada. If you can't get in the door to the organization in an accessible way. If you have to go all the way around the building to the back entrance and then get a call somebody to get a key to use a lift to get up to the next floor. And then you have to figure out how to navigate where that office is. Oh, and by the way, the doorway, you know, there's no actuators on the doors and the doorway isn't wide enough to, to get a full wheelchair through we, you know, how how can we get people even into that space? And so that whole onboarding piece is something I'm really passionate about. And it kind of goes back to some central themes of how do we make it accessible for everybody all the time, as opposed to, let's wait until somebody asks us for something cuz they can't do it.
Shelby Acteson: (15:00)
And that puts so much burden on the person who can't get access and the process for requesting accommodations and requesting access. They can be very, very arduous and dehumanizing, I think prove to us, prove it. Prove if you're disabled, so disabled that we have to change th something, the attitude is still out there. And I think that oftentimes it's not personally intentional. People are trying to be mean. They just don't know the why. They don't know the why. And especially when you're dealing with invisible disabilities like chronic health and mental health, how am I supposed to know you're disabled? You need to prove it to me before we can talk about your accommodations and giving you access to this program or this space or this service. You know? So getting away from that reactive model, moving to a more proactive model is really, I think what's gonna start to shift things even more. I think that one of the other things that proactive policies, I think about diversity efforts and disability.
Shelby Acteson: (16:16)
If we include disability in diversity, equity, inclusion efforts, if it is one of the populations that is sitting at a table having a conversation, then we are gonna get further along with breaking down all limitations and barriers that systemic ableism is bringing to the table. , if we have people at that table talking about disability as part of the diversity conversation. And I think that that's a very proactive thing that we can be doing and something that is very new to a lot of folks who are working in that d e I space. And so there's, you know, so much opportunity for education and collaboration.
Ari O'Donovan: (17:00)
Absolutely. I definitely think that it should be included in d e I work, it upsets me the more that I hear from you and the more that I think about it, that someone that has just started a new job that has a disability and needs accommodations isn't able to have those immediately. It's something that they either have to go request with paperwork and all this other stuff, and they may not even be able to get into the office to be able to do that. That is insane. That really angers me. And I'm a big fan of mental health and all the disabilities associated with that. That is so real and it can affect you so greatly. And it really is an invisible thing that we need to be doing more work with.
Shelby Acteson: (17:52)
Just thinking about spaces and how do we proactively make spaces feel safe for everybody without somebody having to, you know, divulge and disclose a challenge that they have. Because that isn't necessary for us to make a safe space. It's the historical way that we've approached disability and changing that is a challenge. You know, now most buildings are accessible because we have building codes, you know, that give us parameters and frameworks for making the doorways wide enough. But if you're looking at, you know, I spent three and a half years at Harvard University, it's a very, very old institution. And many of those buildings were built many, many, many years ago. And every building isn't required to have an actuator. If you build a new building, it has to be up to code. Um, but when we're looking at existing buildings that, um, have been around for a very long time, you know, making those up to date and making them accessible isn't required unless you do a big rehab and you spend a certain amount of money.
Shelby Acteson: (19:05)
So there's, there's ways it's impossible to go and, and put door actuators. I'm using that as an example. You know, you push a button and the door opens, it's a hands-free kind of thing. It's impossible to put door actuators on every historical building. And you know, we have them everywhere we go. Um, and, and when that happens, we have to anticipate the fact that not everybody can get in that building. So what are we gonna do? We can't just demand every building has an actuator cuz some of those buildings don't even have the capacity and the electrical and the framework and the infrastructure of the actual structure to install some of those things. I would recommend that we find a way, but it's a whole nother story . But the thing is, is that if we know that we are, that we have a space like that, then why are we using it for everyone and is there a better space and is there a better way to make this happen?
Shelby Acteson: (20:04)
And so I think that, you know, yes, we have laws in place and we have building codes and, and then we have this other piece of it, which is what I like to focus on, which is this bigger, how can we make it proactively accessible and inclusive for everybody and not just go, oh, well we're following the building code and we do what the ADA said here. What else can we do? Because we still have people having to go through an arduous process. And if it's too arduous, people won't disclose and people won't ask for accommodations. And then we lose those voices at the table.
Ari O'Donovan: (20:42)
Right. Shelby, I heard that we really don't have to just do the bare minimum. We can do more than that. Yeah. We can find ways. Yes, we can. We have a lot of creative thinkers out here and people interested in coming up with new ideas and having ingenuity. I think we can apply that to this type of situation so that more people can have a seat at the table that deserved to be there.
Shelby Acteson: (21:07)
Oh, absolutely. Absolutely. I think part of that is just changing the mindset of people in general about where does disability fit into the diversity conversation. You know, most people have had some experience with it, but probably not enough to have a broad understanding of how it works. So they're going by their personal lived experience. Maybe they have a relative who has a disability or they've been touched by a friend or somebody else in their circle who has a disability. But that's a pretty narrow interpretation of disability. And people with the same disability, it might manifest completely differently for each individual in each different space that they're in. And so education, I think is, is one of the key pieces of that so that people understand the huge amount of diversity in the disability world.
Ari O'Donovan: (22:11)
Absolutely. There's so much, there's a lot of intersectionality. Mm-hmm. , there's all kinds of connections that people don't readily think about. And that's what I'd like you to share with us next is what is systemic ableism? And can you talk about racism and ableism and how they intersect?
Shelby Acteson: (22:29)
I will do my best ableism is discrimination in favor of non-disabled people. It's that simple. I'm gonna just discriminate against you because you're not as able as the gen population. That includes things like social prejudice and stigma and bias. All of those things are packaged into there. And stereotypes. And I think stereotypes speaks to what we were just talking about, this whole educational piece and people looking at other people with disabilities based on their pretty narrow maybe personal experience with disability and how can we expand that out because that's where stereotypes happen. Oh, my friend has a D H D, you should be doing this. Or they used this or they had this adjustment. And that's helpful in some ways and does kind of connect people, but it's such an individualized thing that we forget that we can't make those judgements and we can't kind of create those generalizations because it's just so different for each individual.
Shelby Acteson: (23:39)
So in terms of how racism and ableism intersect, you know, we know that disabilities stereotypes and all that stigma and bias is experienced in some ways, um, by the bipo community. And so we've got systemic ableism across our institutions. And let me get to systemic ableism first before I move on. Systemic ableism is when institutions, policies, practices, society rules are favoring people who are abled over, people who are disabled, systemic racism along those exact same lines, favoring people who are a different race than white populations and putting racial stereotypes, stigma, bias, all of that comes together. If you combine somebody with a disability and they're carrying all of that stigma, bias stereotypes with them who are also bipo, think about the combination of all of that oppression that they're experiencing because of those two pieces of their identity. And everybody has multiple parts of their identity.
Shelby Acteson: (25:00)
I mean, even when I was describing my background, you know, I do accessibility work. I sing in rock and roll bands, I worked in nonprofits. You know, I have all of these identities and facets of my personality, as does everyone. And if some or all of them are also connected to any kind of systemic discrimination, systemic ism, it could be any ism, then we are increasing the difficulty for them to access participation in our society. And that, you know, impacts their work, it impacts their education, it impacts everything. And so I think that in order to kind of connect those two things, you know, we need to look at assumptions and cultural biases and then figure out how to bring those up, elevate those voices and get people, like I said before to the table together to talk about the impact of these intersections. Because oftentimes in my experience, disability is just put in a little box over to the side.
Shelby Acteson: (26:15)
You know, oh, disability has a law, but they have the ada, we're just gonna put 'em over here. We're gonna deal with people with disabilities in a complete vacuum. And that's just not realistic. People are so much more complex than that. And I think that, you know, there is a surge right now in the D E I world diversity, equity and inclusion around racial equity. It's very, very big in institutions that I've come from. And I'm sure it, it's trending. I know that's a trendy thing to say. It really is. That is the focus of diversity efforts right now in the institutions that I've been in. And that's fantastic. It needs to be. And it's, it's been lacking sorely. We know this and we're not there on that one either. You know, much like people with disabilities, there's so much tokenization in how we present and how we educate people around that, oh, here's a person with with a disability.
Shelby Acteson: (27:16)
So they're gonna represent everybody who has a disability and talk about how you can be more equitable. Here's somebody who's bipo, they're gonna be the spokesperson and the token bipo person, and they're gonna know everything about everything there is about racism. Can't do that. We can't do that. We really need to be more cognizant and conscious about how we're asking marginalized populations and people who are already experiencing all this oppression. How are we asking them to come to the table? And I think that is really where all of these intersections kind of tumble together and exacerbate barriers and limitations that people have to participation. It's as complex as human beings are. And getting to that point where people have a, a real voice at the table. I, I have seen a lot of tokenism in my experience and there's nothing that makes me cringe more and want to just pull somebody out of an environment where that is happening and protect them.
Shelby Acteson: (28:26)
It's also misrepresenting. We need to have the whole spectrum of voices at the table, not just a token person. I do not have answers on how we get from where we are now to somewhere better in the future. But I do think that there's so much work happening now, especially as part and parcel of human resources, HR departments and kind of a global increase in awareness for racial institutional racism. And that's, um, a huge, huge acknowledgement. It's just how are you gonna get the work done going forward? And it's, it's happening. And you know, I know that change takes a lot of time in my work. There's never been an instance where I've gone into an , an institution and said, okay, great, we're gonna change the whole culture and we're gonna have it all tied up in a pretty bow by next year with any kind of change, any kind of change, especially systemic changes so deeply embedded. It's a five year, 10 year plan that there has to be a plan, otherwise it just stagnates out and we don't make any progress. But if increments are in place and we strive for goals and there are tangible goals that people can actually utilize, then we're gonna get closer to the goals.
Ari O'Donovan: (29:53)
We definitely will. There really does have to be a plan. I really hate tokenism that gets under my skin. And when you are talking about a bipo community member that is also disabled, it is hard enough maneuvering through white spaces as a bipo individual and then you throw a disability in there and it's gonna be a different experience for someone that is Asian with a disability. For someone that's black or someone that is Latinx, it's gonna be a different experience. And we can't just pick one and say, this is the poster child of all things bipo and disabled.
Shelby Acteson: (30:34)
I think one of the things that I didn't mention is that, you know, traditionally, historically with iPOC populations, they have had fewer and poorer educational opportunities, economic opportunities and healthcare opportunities. So if you think about those three things, you know, a lot of my work has been in healthcare at Oregon Health Authority and then I, I worked with, you know, all of the students at O H S U who are going to be the next practitioners out there and be our medical caregivers. Um, but with the bipo population, there's traditionally a lot of barriers for them to even get equitable healthcare. And, you know, our systems are all set up, you know, everyone should be able to go to a healthcare provider or emergency room and get equal care. But there have, there's a lot of traditional historical things that have happened over the years connected to healthcare specifically, which adds an even more challenging layer to what people need to navigate when they do need care.
Shelby Acteson: (31:46)
We really became more aware of it. I think other people became more aware of it. When I was working with the Covid response and recovery team at Oregon Health Authority, um, you know, a lot of the work that was done was fact finding and going out into communities to figure out why people weren't responding to the crisis by either getting tested or getting vaccinations. And all of these very diverse populations were coming back and saying, oh no, mm-hmm , we're not doing that because of what happened here. Or this happened in my experience, or this happened to the population of people in my family. And you take all of that when you're trying to address a global pandemic and equitable care for people, it really complicates matters because, you know, our goal as Oregon Health Authority was, you know, public health, what can we do to protect public health, to impact public health?
Shelby Acteson: (32:53)
And at that time it was vaccinations. That was the one thing that we knew would help. And people have reasons for not wanting vaccines, you know, as many people as there are others as many reasons. But we knew that that was one thing that would work and how could we encourage people to get them. And there was so much stigma and so many barriers in place, people didn't even wanna talk about it. And so it really kind of changed the scope of our diversity team, not necessarily my accessibility team, but we worked pretty closely with them. But the diversity team really had to shift and change the way that they were putting messages out and really cater to different populations. I'm thinking of the black community in particular. The most effective way to impact and to get information to those communities is to go to their faith community and identify their community leaders and get them on board and give them the messaging and let them talk to their community.
Shelby Acteson: (34:02)
And once people understood how important that was, I worked peripherally on a guide for faith communities and faith leaders on how to navigate all of the parts and pieces of the pandemic, um, specifically to reach that population they served. And so there's lots of different ways that we can navigate to get good communication out there. Always, always, always. It's great we can address different communications and for example, a community where faith is important and we can segue information through there, but are the disabled people in that faith getting the information that they need are the, you know, L G B T Q plus getting the information that they need in that faith or in that space, you know? And so there's so many different layers and different ways of communicating with different layers and how do we, in a crisis, in an emergency, how do we choose the best way to communicate with people so that they can get the healthcare that they need?
Shelby Acteson: (35:13)
And yes, we have many challenges there, but I, I really saw people go, oh, I didn't realize that. I thought we were just gonna send everybody the same little poster and everybody was gonna get the message. It was a light bulb for some people. And I think that's what we hope for in all the work that we do. Whether it's, you know, dealing with systemic ableism or systemic racism or any other form of discrimination. How can we get individuals to understand the why, why is that a problem? Ah, light bulb. And then we can take that and build upon it with education and information.
Ari O'Donovan: (35:57)
Really, you gotta get people to understand the why you really, really do. Because if you can't get to that point, nobody's going to care enough to do anything. So you've gotta get people to understand the why. You've gotta get people to understand how it is more connected to them as an individual than they know. Right? And coming to trusted leaders, that's the whole , that's everything behind the peer advocacy program at Boost Oregon that I lead. We really wanna get to those trusted leaders, community members, faith leaders, people that community members trust. That is the best place to start. Yeah,
Shelby Acteson: (36:38)
I agree. I agree. And, and for a state organization to kind of get a taste of that and understand and, and not only get a taste of that, but put it in, you know, implement a plan for that and see results, I think that was really impactful. And it unfortunately, it took a international worldwide pandemic for that little shift to happen. But I guarantee you that that will be carried forward in the work that they're doing now, that they're currently doing now for public health. So is incremental and it builds on it itself. I think sometimes we get frustrated because, oh, it's not changing fast enough or it isn't happening the way we want it to. But all of these little tiny incremental pieces, they do actually impact people, individuals along the way. As we're getting to our goals,
Ari O'Donovan: (37:40)
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