E57: AI, Accessibility, and Public Policy with Alex Bennewith

In this episode, Alex Bennewith, a seasoned disability policy expert, shares her 25+ years of experience shaping federal legislation to improve access in healthcare, transportation, and technology. She highlights recent wins like the updated Section 504 rule and warns of both opportunities and risks in the rise of AI, urging inclusive development and design

Transcript

 Speaker 00:04

Welcome to the IAAP United in Accessibility podcast. Today's guest is a powerhouse in disability rights and public policy Alex Bennewith, former Vice President of Government Relations at United Spinal Association with more than 25 years of experience advancing legislation and federal regulations. Alex has played a key role in shaping national policy on health care, access accessible transportation, inclusive technology and civil rights for persons with disabilities. In this conversation, we explore what it takes to create lasting policy impact through persistence, partnership and strategic advocacy. We also discuss emerging challenges in AI, the evolving landscape of accessible transportation and the growing need for authentic disability representation in every stage of policy making. Let's dive into it on the United in Accessibility podcast.

Rachel Paul 01:11

Welcome everyone. Thank you for joining us for our United in Accessibility Podcast. I'm Rachel Paul with IAAP, and today I'm joined by Alex Bennewith with the United Spinal Association. So, I would just get started by having you introduce yourself and tell us what motivated you to pursue a career in advocacy and policy strategy, especially in that health and disability field. 

Alex Bennewith 01:37

Yes, thank you so much, Rachel. It's great to be here. Let me just introduce myself. I'm Alex Bennewith, with Alexandra, but Alex for short. I'm Vice President of Government Relations for United Spinal. I have been with United Spinal for, this is my 14th year, but I've been in the policy and advocacy space for over 25 years, and really, it all comes down to personal issues and family and having a lot of family members that are dealing with chronic illness and disability issues. So it really was the only thing I could imagine doing and the only thing I want to do, and I'm just honored and passionate and thankful that I'm able to do this work, and it's such a, I get a real high truthfully, I do when, when we get wins in the policy space, because I know that it's going to help you know folks on the ground, people's quality of life, and I see that every day, just personally, but also just for the membership that I serve at United Spinal. And just to let you know who United Spinal is, United Spinal represents wheelchair users, people with physical disabilities, people that use mobility devices. You know, as there are as many as 5.5 million wheelchair users in the United States, based on the latest US Census Bureau data that is fairly old. It is going to be updated very soon, so I'm sure it's going to be closer to seven or 8 million, truthfully, but that's the official number so far. We have chapters across the country, and we do all things related to accessibility and improve quality of life for our membership and the broader disability community, from technology to healthcare to employment, disability rights with large, accessibility, and we can talk more about the physical accessibility of the built environment and web access issues as we go on, but, yeah, it keeps me busy. Keeps me very busy.

Rachel Paul 03:45

Yes, you are very busy, and it seems like your work has allowed you many opportunities to collaborate with different federal agencies. Can you share how you engage with those agencies, like the White House, the CDC and even the FDA, and how have those policies impacted the individuals that you advocate for?

Alex Bennewith 04:05

You know, so I have been at United Spinal for over 14 years Ish, this is my 14th year. My role is to engage with federal agencies and the White House and the legislative branch to pursue and promote better quality of life issues and regs and legislation. So really, it's all about partnerships, and it's about collaboration. And so, I have to be able to make the case, whoever you are, if you're a Republican, if you're a Democrat, if you're in a conservative administration, if you're in a liberal administration, I don't really care about that. That's not my focus. My focus is, how can we agree on improving access, how and improving accessibility, improving quality of life for people with disabilities? What is that solution? And that's the first thing. So, when you look at it that way, you end up, I think, in my experience, end up getting a lot of synergies in the private sector and the public sector. It’s really a question of building partnerships, of introducing yourself, of looking to see what we can work on together. And you know, on the on the congressional front, you may have some opposition with one office, one congressional office on something, but they may be a huge supporter on another issue. So, you never know. You have to be respectful. Obviously, you have to be professional with whoever you engage with. And then if there are disagreements, you have to let people know what your disagreements are and be and move forward based on that, you know, respectfully. So, I think that's, that's how I approach everything that I do, by engaging with agencies. You know, we've had a lot of good wins lately, and I'm happy to answer that more in the in the next question.

Rachel Paul 06:04

Absolutely, and I'm sure that must be challenging, because your mission is never going to change, but every couple of years you might be dealing with different people. They have different offices, different administrations. So that must be very, very challenging if I get some momentum going, some setbacks and

Alex Bennewith 06:21

Some setbacks, but then some wins. And it's cyclical, but you always, you know, in the advocacy in the policy world, you always have to be, it's a marathon, not a sprint. The more momentum you get on an issue, the more success you are able to achieve. So, you have to do it so that people can say yes. You have to create an environment where they cannot say no to you. So, you've got to push at all levels. You've got to push on the grassroots level. You've got to meet and make sure people are vocal and people are hearing, and people are seeing the issues. And then, you know, Congress is like high school, truthfully, if the cool kids are doing it, then everyone else wants to do it, you know. So, you've got to create that environment where, oh yes, this is what's happening. I have to be in on this. I have to be supportive of this issue, because everyone is talking about it. So, you have to do a media push, a grassroots push, a congressional push, and then a push in the executive branch as well, so that they're getting it from all angles. But you also have to absorb a lot of information from everywhere, so you can keep up to date on the new information or provide insight to help things go your way from the inside, we've seen a lot of that with air travel. We got a few wins, quite a few wins. Last year, the display community did. So, I'll give you an example of a huge one that really impacts so many, and it's to do with accessible medical diagnostic equipment in hospitals and clinics. There's a rule called the 504 rule, which is part of the Rehabilitation Act of 1973 which was given a huge update, a historic, first comprehensive update in almost 50 years, where they were looking at accessibility in all aspects of health programs and activities that receive federal funding, so accessible weight scales and accessible examination tables are now going to be required, along with a lot of other things, but just to take the accessible weight scale as an example, it really illustrates the challenges that our community faces. I think I can count on one hand five weights, accessible weight scales in the county of LA, individuals need to be weighed. Individuals who are wheelchair users need to be weighed, and they cannot use regular scales. They need to have a larger footprint and a ramp to get onto a digital and accessible scales. Individuals who you know, women who are pregnant, who have gone their whole pregnancy without being weighed. How do you provide guidance on medication for that if you don't even know somebody doesn't know their own weight, how do you on an examination table? How do you examine people for brain cancer? Or what happens is you don’t, and people get tumors that have been undetected, and you know what happens there? But the tragic story, also, with the weight scale issue, from a dignity perspective, is that many members will have to use weight scales at postal offices or even at zoos, because they don't exist enough in the regular health care system. So, the 504 rule that came out in May was huge for us. It was huge, and it really is a game changer anytime there's quality of life improvement, be it small or large. It may be small to us, but it's a game changing to our community. So, I was really happy with that, but that took a lot of a lot of work over many years to get to that point, and luckily, we had all the synergies in place, right? We had the administration was working on it. We had interest from congressional offices, and obviously a lot of our community worked together to submit comments. You know, over the years, we have been working with the Department of Justice, and this is not just a one and done thing, it's over many years been talking about this issue, but that was a really big one. Really big one.

Rachel Paul 10:46

Well, congratulations on that win. I know hard work and energy went into that. I imagine with your 25 years of experience, you've seen a lot of change and seen the landscape changed. How has that changed over the years?

Alex Bennewith 11:03

Yeah, and there's so much good stuff to share. 25 years sounds like a long time. 25 years is actually a generation. When you look at collecting data or looking at information, 25 years is considered a generation in time. And so, I'm thinking of when I first started. We weren't seen, you know, if you, if you go back to the 70s and 80s, right, the 60s, 70s in California, where a lot of the disability rights movement started. And you know, at UC, Berkeley, actually, in California. And then you think about 1990 and the Capitol Crawl, March of 1990 where there were 1000 people with disabilities protesting to ensure that the Americans with Disabilities Act was passed. 60 of those folks rolled up the US Capitol because they weren't able to access the building. They had to pull up the steps. Those things are visually, you know, amazing historical moments in our history, but they're just, their spotlights, they're kind of flashes in the pan, and then people forget. I think definitely 1990 but there are so many other bills before then that got signed into law, which have been helpful, and we just talked about the Rehab Actin 1973. But there are so many things that you can't think about, you don't know about until things happen, like even, for example, with the ADA, we could never have envisioned that there would be on demand, transportation. We never could have envisioned that. So, there are some challenges with access to some of these companies in that space, in the rideshare space, because they are not governed by the ADA. They consider themselves. They are a tech company, and they don't have to comply with some of the ADA rules. And we could not have envisioned that in 1990 you would be able to just click a button on your phone and have a have a car show up to your door. I mean, these are things you can't think about. So, as much as what you can imagine. What I've seen is that definitely since covid, so covid is another generation, a key generational change in the movement, right where we had been fighting for things for so long prior to covid, it's like BC right before covid. You know, things like telehealth, another tech issue were fighting constantly would have to ask for extensions on telehealth, on Access to Medicare, approving virtual or phone access to doctors and prescription access virtually. But all of a sudden, with covid, everyone understands finally, that, Oh yes, telehealth is important, and we all need telehealth because of access, and that directly impacts and improves quality of life of definitely, all people with disabilities, but especially people with physical disabilities who may not be able to get into a car, who may not have access to other transportation. We are seen more, I would say that's the difference. But not enough. I think the more we’re seen, the more we are included and integrated in every system and not segregated. We don't need segregation and that I mean in everything. I mean in design. I mean in app development. I mean in programming, segregation is never a good thing, and I see that at the person level too. The more people are included, the more there's a better understanding of what the needs are. And so, I'm here to promote that in our community and make sure that people. They can speak out for themselves, but I want to point that out too for my community. But I think there has been a huge evolve, evolving of, you know, understanding a little bit better display rights, and I appreciate that with, you know, some of the wins I just talked about, but there's definitely more to do. You know, when you when you're having to deal with AI and the impacts could negatively affect our members. We know the discrimination challenges and the programming challenges are related to AI and automated test taker things and things like that. And you know, things like multi factor authentication, which can be burdensome for people with limited dexterity, unless you have some other types of authentications, like biometric authentication, things like that. Always thinking about it as a a paradigm shift. It's not that you can't look at things individually and separately. You have to look at it as a paradigm shift when you're thinking about programming things and design development basically,

Speaker 16:09

With the adoption of WCAG, 2.1 in many countries, there is an increased demand for web developers, designers and other professionals with knowledge of web accessibility standards and guidelines. With this growth comes the need for an objectively verified level of expertise. The Web Accessibility Specialist exam will provide individuals and employers with the ability to assess web accessibility competence complete the WAS and CPACC exam to earn the special designation of Certified Professional in Web Accessibility.

Rachel Paul 16:48

You mentioned a lot of these other barriers. I know a lot of your work has focused on transportation. And can you talk about some of those barriers in those sectors, and what needs to be changed still?

Alex Bennewith 17:01

Well, I did talk about accessible design and universal design from. So, there are company, I'm not going to point to specific companies, but we know there are various companies in this space. You have apps and you can order, you know, cabs and rides, shuttles and different things to to whatever your location is. The challenge is, with some of these companies that they actually don't have accessible vehicles. So, what they call accessible vehicles may not accommodate power wheelchair users versus manual wheelchair users. So manual wheelchair users are folks who are able to, it's on camera, but I'm doing the movement with my arms of moving your own wheels. That means you're a manual wheelchair user. You can, you can use your upper body pretty much power. Wheelchair users are individuals who do not have the ability to be they don't have the upper body mobility issues. The paralysis is a lot higher up in their spine, so they may have some limited dexterity in their hands or dexterity. It's a lot bigger footprint, the power chair. It's a lot heavier, and it's a lot bigger all around. So you have to have a wrap for folks to be able to roll into the van or the shuttle. And obviously, not all companies are alike when it comes to that we are because of that issue, we have launched a couple years ago now a secure ride Coalition, which is made up of various companies in the auto space, as well as in the wheelchair company space, along with the United Spinal we're co chairing it, looking at developing automated securement systems for wheelchair users. So you don't have to rely on another person to secure that person into the spot on the shuttle or the van. So that's a tech solution, which would be wonderful, and we were able to get the Department of Transportation, Small Business Innovation Research Grant given to two contractors that were working, that are working with us, with the coalition, on this effort. So that is going to be a huge game changer. Again, I use that word, but I don't use it lightly, because those folks that aren't able to have access to a car, cars are super expensive, especially if you have to adapt them, another $80,000 on top of buying the car. If there are more transit options that are accessible to all wheelchair users, not just manual, then of course, that's going to be great. And I'm looking at legislation. I've introduced bills in the past. We've been successful at getting more funding for transit options, for seniors and people with disabilities at the state level. But we're going to be pushing that even more by looking more closely at tech solutions in the transportation space and seeing how we can get better transparency and coverage for folks in some of the harder to reach areas, underserved areas, rural and urban. So, you have, you have underserved urban areas too. People. Forget about that, but just a lack of services. So, we're trying to build the number of services and track more of how we can get more info on that to build and provide more services.

Rachel Paul 20:42

Piggybacking off that with talking about technology, there's a lot of progress has been made in assistive technology. Again, everything's so pricey. Talk about, you know, having to change a car, any of these assistive technology devices, but they can help empower individuals with disabilities. So, what are your thoughts about that? And then maybe, what about AI that's been such a hot topic? Do you have any thoughts on the impact AI is having on assistive technology?

Alex Bennewith 21:13

Yes, yes. I mean, AI is everywhere. AI is huge. You know in the healthcare space and in the employer space, let me just go to the employer situation, but it's used to look at resumes. It's used to interview people and make assumptions about people you know being interviewed, which may be incorrect. You know, somebody who, for example, has an autism condition may not be able to look somebody in the eye, and it's really just a condition that they have. It has nothing to do with, you know, being disrespectful or not being able to do their job. So that's a specific example. I mean, there are some good things, you know, there's a there's some good things when it comes to looking through a lot of information all at once, if you're doing a research project or something for work. But there always has to be a human in the loop, kind of to review that data. You have to kind of have some protection on AI. You don't want to be discriminated against because of AI, and that's a huge issue. And so there may be also some information and resources that are shared, but individuals have to be notified of when AI is being used and when it isn't being used, because an AI solution may not be, you know, be accessible. So those are some of the things that we have to think about when it comes to employment. And just having a having an Accessibility Coordinator at places of employment is also one way to for protection in employment and just not understanding people's understanding their rights, you know, their employment rights and EEOC Equal Employment Opportunity Commission came out with several helpful tips and tricks and tools for employers to use, you know, when they're considering you the use of software you can't, you know, you can't have timed things that time out for people, as I said, you know, individuals may need, may take longer to use a keyboard. But it doesn't mean that they cannot use it. They just have assistive technology to help them use it so you know, timed things would be bad, and that's and that can be set with AI algorithms, things like that. I'm just looking up some other stuff. Yeah, and obviously, understanding the ADA and opportunities for protection, if there's any bad faith efforts. Wearables is another thing that I didn't even mention, but if you need to wear something to monitor something, wearable technologies will be different for people with disabilities, and they might be for people without disabilities, especially if somebody has limb issues or limb differences. So that’s something to think about, too. How is that data being collected so and if you're reviewing that data, you know, you have to be mindful of what the inputs are. I was telling folks earlier. You have to program it well and be inclusive as much as possible, because what you put into the AI programming is what you get on the output side, you know, but virtual options are great. Obviously, we want to encourage that, and you know, see, be supportive of that where, where it does include increased access, but we also have to be mindful of the limitations of AI and being open about that and understanding that. That's my answer on the AI thing, it's so huge, it's so huge, you probably have just one podcast on more than one on just the AI stuff, but um

Rachel Paul 25:09

 And it changes so quickly. And yeah, what we talk about today could be different next week.

Alex Bennewith 25:14

Yeah, but just always understanding that you need to be cautious about how you roll out AI and you need to have input from the disability community. And I know that the Access Board has done a good job of this, and the EEOC has looked closely at it. So, you know, we just have to be cautious when we do that. I didn't get into banking, but I wanted to address that too, because it gets into a little bit of the AI privacy and security concerns related to employment. So, banking and employment, I guess you know you need to get your money if you're employed, you use a bank. Many of our members who have limited dexterity end up I know one person who works for me, he asks for somebody to put the card into the ATM for him, because he cannot do it himself. I mean, relying on the kindness of strangers is not a strategy, and it can be very dangerous, like things like passwords too. I know I switched over more to the authentication side, but it's related to banking and employment, but having, having ownership over your own password and verification authentication process, nothaving to, you know, have it be read by somebody else, or having to be input by someone else, you know, that's  really important to try to figure that out. And I know I mentioned some of the things that could fix that

Rachel Paul 26:43

Like voting, too. That's something that comes up a lot. You know, we just had a big election, and we hear the stories and stories about inaccessible voting. And yes, having to go in to have to ask for, you know, assistance, or someone to put in. And 

Alex Bennewith 27:00

Yeah. 

Rachel Paul 27:01

So

Alex Bennewith 27:02

Yeah, it's similar. And we're looking, we definitely are involved in that too, where you have to have opportunities for individuals to be able to mark their own ballots. Yeah, it's a private right for folks to have that absolutely,

Rachel Paul 27:05

Well, you've certainly had a tremendous career and a very impactful career. So, what does the next 25 years look like for. What projects are you working on? Is there anything you know, any upcoming legislation, bills you're working on? Where can we follow you and see what's next?

Alex Bennewith 27:42

Yeah, well, I think AI is going to get so much bigger. I do want to do a lot more in that space. I didn't even get to the benefit determination of AI too. And so that impacts everything in the federal space about how people are eligible for different benefits and services across our federal government, and that's a whole mess in and of itself. But where does it take? I don't know. I just want to keep doing this and getting more visibility for our members and making my own job defunct. I don't know if that's even possible, because there's so many issues to deal with, and as I said earlier, you can't really imagine what the issues are going to be because, and that's kind of the exciting thing, there's always something new to address and think about how this impacts our community. So, I think I'm going to be around for a while. I just wanted to go back to AI too again, to say there are some great things about AI, about how it helps our members search the web for things you know, get support for different tools. I mean, it's wonderful, but we just have to be careful about it. 

Rachel Paul 28:54

Well, it has been a pleasure getting to chat with you again today, and I look forward to crossing paths again and following updates from you on what's happening.

Alex Bennewith 29:04

Yeah, thank you so much. I'm happy to you know, have this official podcast with IAAP. I'd love to continue working with you all. I know that you know, AI and other tech is evolving constantly. So would love to share our insight as United Spinal my insight and our members, insight into how we can get more visibility for our members and better access. Thank you so much. 

Rachel Paul 29:31

Thank you.

Speaker 29:34

Do you want to continue the discussion from this podcast, members can access the strategic leader in accessibility community of practice in our member connections platform. If you are not a member, please check our website for all IAAP membership benefits, or email us at info[at]accessibilityassociation[dot]org and we will be happy to talk about membership and help get you engaged.