Who Audits The Auditors When Disability Groups Miss Accessibility

If we can name every brand that gets accessibility wrong, why do so many disabled people still avoid working for disability organisations? That question drives our conversation with Deborah Ruh about Billion Strong’s new Disability Power Index, a “mirror” built to measure how well disability organisations actually walk the talk on accessibility, inclusion, and representation.

We unpack what makes this index different from the many corporate scorecards already out there. The focus stays on governance and leadership, employment, programs and advocacy, communications, and economic ecosystem inclusion. We talk candidly about why leadership without lived experience creates mistrust, how inaccessible internal processes shut people out, and why credibility collapses when organisations that claim to represent us cannot meet the standards they promote.

We also zoom out to the bigger systems problem: technology and AI accessibility tools are advancing fast, yet real inclusion can stall or slide backwards when the community is fragmented and under-resourced. Deborah shares how Billion Strong plans to strengthen methodology with university partners, fund the work through a membership organisation model with scholarship options, and build practical resources so the index helps organisations improve rather than just get judged. We close with a hard truth and a hopeful path: when we coordinate and raise our own bar, we gain power to change everything else.

Subscribe, share this with someone leading a disability organisation, and leave a review to help more listeners find Access Chat. What would you measure first to prove an organisation truly serves disabled people?

Transcript

Welcome And Why Deborah Is Back

Neil Milliken 0:00

Hello and welcome to AXSChat. I think most of our regular participants are gonna recognize our guest today because it's Deborah. She might have been here before a few times. So Deborah, uh welcome as a guest this time rather than as a it's it's we're here to talk about Billion Strong and the work that you're doing in a different sphere. So we talked about Billy and Strong before, we've had Steve on, who's now your CEO of Billion Strong, but you've recently launched a new initiative and you've been going through a lot of strategic reviews and changes. Can you remind the audience what you've been doing with Billion Strong and what it's now working on?

Debra Ruh 0:48

Yes, and and I I really want to thank you and Antonio for letting me do this because I know we've been doing this show for 12 years, but still I do appreciate the support that you know you both have given to it too. And we as you said, we have talked about Bullion Strong before. I started Billion Strong in 2022, and and we and it was an idea that I had. I actually somebody else said they said something I thought, oh, and I got to this point. But one thing that was cool, some people might remember, is that I won this little contest, this creator accelerator program contest at LinkedIn with the idea about bullion strong. And at the time, they gave us $20,000 to launch it, which is very, very, very kind of them. I appreciate so I always like to uh thank LinkedIn, but at the Zero Program, the Xero Project, we were just talking off air about how amazing those people are, but at the Zero Project, Steve and I announced that we were creating the Disability Power Index. And the Disability Power Index is created for the disability community. And a lot of times I will say it's a mirror for the disability community because, you know, when you think about the infrastructure and the community and, you know, you know, all of us together globally, the disability community, you know, the disability organizations, the organizations of people with disabilities, people call them different things, but the reality is we should be the ones that are really standing up doing the hiring and the educating and that we're fully accessible. We really, I think it's time for the disability community to really take um time to look at ourselves to see how are we doing? Are we being innovative? Are we being accessible? Are we being inclusive? And also it's sort of sad to say that I've had many people with disabilities say to me, I don't want to go into the disability organizations, Deborah. They don't pay well. Oftentimes they're not including us. So even the disability in our own field, we don't want to go into these organizations. So I think it's just really important that we take a look at what it means to be leaders and including people with disabilities ourselves.

Antonio Vieira Santos 3:00

So, Deborah, some people that might be listening to us, they might say, Oh no, another index. Okay, we have so many indexes. Can you please explain what this index is about and why you decided to go with it?

Debra Ruh 3:13

Yeah, and thank you, Antonio, because that is such a good point. I actually reached out to one of my friends that works for a large corporation and she said, I heard you did the index, count us in, we're gonna do it. And I said, Okay, well, you're right. There's a lot of indexes out there, but most of them, Antonio, which is thank you for the question because it's a good point. Most of them are to look at how corporations are doing. There are multiple disability indexes out there to how are the different brands doing? Are you including us? And they have different metrics and stuff, and a lot of them are paid for. You have to, as the corporation, pay to do the index for them to see how you're doing. The disability power index is actually a mirror to ourselves. So we are not looking at corporations, we are not looking at governments, we are actually looking at disability organizations, and we're saying, how are we ourselves doing with the index? And the information we're using is all of the information that these organizations have out there publicly. At the same time, we are doing quick audits and stuff of it. But we are looking at, you know, once again, is the disability community actually accessible? Is the disability community hiring people with disabilities? Disability it's sort of strange that I have to ask these questions, but we all know, everybody that's listening to this probably knows that the disability community hasn't done a good job of including the disability community and making sure everything is fully accessible to the disability community.

Neil Milliken 4:48

Great point, Deborah. I I think that actually sort of defining what we mean by community is also a a part of this because quite often we see charities and disabled persons organizations or OPDs or DPOs, depending on what which bit of the world we're sat in, that uh claim to represent disability, but the makeup of the leadership of those organizations is quite often not filled with people with the disabilities that they're uh claiming to represent. And and this is definitely a bone of contention amongst the community of people that are not working within these organizations. And also we know anecdotally that many of these organizations also have issues with accessibility and and working for them actually sometimes is quite hard if you have a disability because they haven't walked the talk. So I think it it's it's a really interesting exercise that you're undertaking here because it undermines the credibility of DPOs if they're not doing what they're telling other people to do.

Debra Ruh 6:04

And also, is it fair? Is it fair for we know that we're a billion, we're over a billion people with disabilities. We know for the stats we have, we know we have at least 1.3 billion people with disabilities. Probably it's much higher because you know the stats are dated and we haven't got stats from every statistics on everything. But the reality is it is sort of a little teeny bit embarrassing for us to sit here and say, I cannot believe that insert corporate name, corporate brand, that they when actually we aren't doing it ourselves. And we know we're not doing it ourselves. We all know we're not doing it ourselves. But it's time to actually, you know, take a look at it. And I'm being very strategic how I'm looking at it. As a matter of fact, I've done a few things even since that I announced it at the UN at Zero project, and that I put together a board that is actually going to evaluate me. Every single person on the board is a senior leader and have personal lived experiences with disabilities themselves. I just think once again, if you're gonna have a disability organization, why don't we walk the walk too at Billion Strong? But I also had actually Claude, AI Claude, told me that I get it, Deborah. It's wonderful. I think it's a great idea, but who's Deborah Roo? Who's Billion Strong? And so it told me that I really should have a credible university partner that's validating the methodology before the launch. So that's something that I'm working on right now. I'm talking to multiple universities. Because once again, we don't want this to be about Deborah Roo. We don't want this to be about Billion Strong, but just think what we could do if we got it right, the disability community. First one to go talk with on mute, you win the prize.

Tech Is Moving Faster Than Inclusion

Antonio Vieira Santos 7:48

So so we all hope that that university is also accessible because we also know that sometimes in the university community, you know, they are not the most accessible organizations in in the world. I can give you a few examples from Irish organizations, but I'm not going to bother anyone now. Never in the history of technology technology was so cheap to improve accessibility. Okay. Never in history we have so many tools like we have today, and they were accessible to so many people at the same time. Of course, there's always people who don't have access to the most recent tools due to economic constraints. But even some of the tools on AI that we use today, they allow three options that you are able to use it and do something with it. At the same time, we see that progress is basically we haven't seen that much progress. If we mix that the fact that we have the technology, we have everything, it's almost like instead of going this, we seem to what we expect to happen is not following the technology developments. So how do you see that Billingstone can contribute to that? To to improve things.

Debra Ruh 9:06

Whenever we were at, when we did the announcement at Zero Project, Steve said something. And once again, Steve Tyler is the acting volunteer CEO of Billion Strong. He works full-time and gets paid by Leonard Cheshar, which is an amazing group. But what he said was that we were barely, you know, we we were not moving forward, but we were doing our best to not move backwards. And then a lot of stuff happened that we won't talk about here. And it has thrust us backwards even more. And you bring up such a good point, Antonio. Forget following how fast technology is expanding. As fast as expanding, no, we are not being included. No, it is just a joke. We're not even on the road to being included. Not really, when we actually know how to do it now. We know how to make everything fully accessible. And AI is helping us fill in so many gaps. AI is just going to be such a gift to our community, but not if we don't get together. If we don't get together and start supporting each other and really having each other's back and demanding more of ourselves and the organizations that are that are funded to support us. And I know all this stuff. I am a person with disability myself. I have a daughter with Down syndrome in the United States. I get what is happening all over the world. All over the world is pretty intense. But I don't know who can argue with why don't we be the best? Why doesn't the disability community be the innovators? Why are we let me tell you what we can do and taking that to the corporations? I think it's really sort of unfair what we have been doing to the corporations. And we were trying to figure out how to be included. Maybe what we do is we go to the corporations, we convince the brands to include us, and then we'll solve it. Well, no, we instead we just infite it. You know, these corporations cannot get it right. I'll do this one little quick grant. They can't get it right because, for example, in the United States, we have over 350, excuse me, we have over 350 blind organizations in the United States. So if you're a big brand or even a medium brand and you want to support people that are blind in the United States, I would like you to tell me which one you should pick. Because all the other ones are going to get mad at you for picking that one. Just saying, yeah, I just think it's so important for the community to say we haven't actually been that feared of corporations either, because a lot of the corporations have been tried and we still went after them. So I'm just saying, why don't we do it? And then we can actually help the corporations and the government and the others fully include us. Sorry, I'll stop now.

Neil Milliken 11:48

So can you tell us a little bit more about the sort of the things that you're evaluating? I think that you know we we've talked quite a lot on access chats before about how the disability organizations don't collaborate terribly well. But but I mean what are the what are the things that you're measuring in uh in the disability power index? I think you have like five different domains. So what are those things that you're you're you're looking to evaluate and help, and as you say, not finger point but just hold a mirror to?

Debra Ruh 12:23

Right, right. And that's such a good point, and thank you. It's and thank you for the five domains, but we're looking at governance and leadership, employment, programs and advocacy, communications, and economic ecosystem inclusion. So, for example, we're looking at, you know, do you openly talk about all of your internal, all of the proposals you send out? Are they fully accessible? And are you showing preference to vendors that have disabilities? So just once again, things like that. We're writing them all down and looking at all the different pieces. And right now, once again, we're working with public information. And we are going to give the organizations, you know, time to respond back. But the more I dig into it, the more I realize if we're gonna do it right, gotta walk the walk, you know, that's why our university partners are becoming more and more important as we pull this together.

Antonio Vieira Santos 13:17

But research costs money, you know. So if you're going to do all this work, you need funding. So what what is the model to get that money in order to be able to do what you aim?

Debra Ruh 13:29

Thank you, Antonio. You know what, I I am very bad about saying on social media, anybody that follows me about lack of funding, I think I whine a little too much about it. But the reality is, I don't think that's where we are anymore. It's not that, I mean, I think it's more about it's time to bring in the partners that are gonna really believe in what we're doing and join us. It it really is. And one thing we're doing, we have multiple programs that we're working on creating right now. And and I'll be really honest, when you go to the Billion Strong website, it still looks very static. We, you know, we're not getting the stuff out there because money isn't flowing necessarily, but you know, you got to do everything in the right order. And so, but we also are creating a university research alliance to really bring our universities and the research together because so much good research is being done, but we don't always know it's out there or where to find it or who's doing what. So just you know, pulling them together. We also believe that the way to fund it is by funding it ourselves. And so Steve has decided to make Billion Strong a membership organization. And so we, and we're figuring all that out. We we have actually, I can announce our first member, and I'm very proud of this. It is Access Chat. Access Chat is a small social enterprise, and we are the first member. So I really, really am grateful to my partners for doing that because we also want to walk the walk. Billion Strong will also be indexed to make sure we at all times, and you know what, with accessibility, you can screw things up. You can. You can knock things out of access so easily. And so one other thing that came out was as it's like we're trying not to, as we're looking at, we don't want this to be seen as a tax. We want to be seen as, gosh, we could do better, you know? And so one other thing that I was advised through the advisors and the all the AI that I'm talking to and all the different research I'm doing with the universities is that we want, we need to make sure not only consistency and they're following you, but that we have the means to help. Okay. And so one thing that we want to do with all of this is we want to make sure that there are free resources out there. We also have training courses. We can, we want to have a list out there of allow people to say, hey, I'm a vendor, I have lived experience, and so that you can find the community. Our commitment is we will have resources out there. We're not just gonna say, cannot believe that you haven't done this. We'll actually actually have resources out there where they can get it. We will provide some free consulting and stuff to help. But the reality, if you're really committed, you need to be working with vendors from our community that know how to do this. It's, you know, Billion Strong isn't there to take that on. We're gonna help and we're gonna show you the resources and we're gonna show you who our vendors are. And also then corporations come out there and can come and say, what are your biggest priorities? And I'm gonna tell you a quick story that I might have told on air before, but just a real quick story. Whenever President Obama was elected, wow. Anyway, he hired a CIO that came from my Commonwealth, my state, Virginia, and he knew about the work I did. And so he invited me, along with eight other organizations, to the White House to talk about what the disability community in the United States needed, you know, during Obama's first administration. And what an honor to be invited. Oh wow, what an honor. So I'm there with these brilliant other people. And but I will tell you, sadly, some of those people started arguing and fussing with each other about what the priorities were. And finally, the Obama team said to us, listen, we are talking to the African Americans, we're talking to the Latin Americans, we're talking, started naming off all the groups and said, Why didn't you, the disability community, decide what your priorities are and come back to us? See, that was a sad little meeting. But how many of those meetings are happening all over the world? We can do better. We are the innovators, we are the employers, we're the investors. So, and back to the comment, the question you asked, you said, Antonio, how do you fund it? We fund it by doing it ourselves. We fund it by, you know, supporting the Disability Power Index. And also, Billion Strong is committed to having a very small team because we want to work with our community. So, and so many people now are going into. I I know we used to use the term gig economies a long time ago. People are becoming a lot more people are moving into entrepreneurial positions these, especially in our community.

Neil Milliken 18:11

That that that great. So you've got this membership organization. That does also mean that by funding it through that membership is not a sort of pay-to-play thing as well, because I I I know that that certainly some of these sort of things in our space, just by being a member, you get points. So so so so that then kind of skews the evaluation and and and to a certain extent devalues the assessment of maturity of organizations. So I think that by separating out the funding from the evaluation is is important to remain credible. So who can join in terms of membership? Is it individuals? Can organizations join? I mean, we well we know organizations can join because access chat is an organization. But also, you know, what's the difference? How do and the challenge with member organizations is you know, the disability communities, you know, not the richest community out there. How do how do you invite a billion people in?

Debra Ruh 19:15

Right. And how do you make sure everybody can be included when you think, oh, it's only this, when the reality is the reality a lot of people are welcome right now. Yeah. And so we have we're we definitely are focused on it from a global membership organization. But one thing we're gonna do when it gets out there, the content and stuff gets out there on the website is you'll be able to apply for membership. There is individual memberships. We're gonna have some corporate founding members, we're going to have university memberships, we're gonna have disability organization membership. So we'll offer memberships across so that everybody can join and participate. But for individual membership, if people can't pay it, we're gonna give them, you we'll still allow them to join us, obviously. But also we're gonna give people the chance that if you can join and you want to pay for somebody else's memberships, we'll allow the community to provide scholarships. Once again, because I think if you do this right, once again, and I've heard other people say, oh, do it and we'll never do this, and then they go and do that anyway. And I understand the need for keeping your organization, your employees paid. I I get that. But that's also another reason why I want to, we really want to keep the team, the employees very, very small at Billion Strong, because it's so easy for that to happen. And no, I empathize so much with those organizations. I have run million-dollar organizations, and you're like, oh no, all I have to do is just make sure I hit payroll and make, you know, it's sort of stressful. So we want to make sure everybody can join, but also that the community can help each other. And also a thing that we're very excited about that we can do right now is convening, because I think that's an opportunity that we see happening in some powerful ways. I I will use Zero Project as a convener when they have their really amazing conference that you can join virtually. They do more than that in that they convene us to do research. They so it's very important that we all come together so that we can be heard and that it's not just always convening that looks like a Western world and not leaving out all of the others. And so that is something that we are really excited about offering convening because we really believe that's a way that our voices can be heard better. Over to you, Neil. I think you have a question.

Neil Milliken 21:47

Yeah, and and and it's about convening, actually. And and I think it's probably one that both of you can come in on because Access Chat used to be a convening space.

Debra Ruh 21:56

So true.

Neil Milliken 21:57

We used to use social media as As a way to have conversations because of the changes in algorithms and ownerships and you know, and also social exhaustion with some of the stuff going on, that dynamic has changed. So is William Strong going to enable those sort of virtual conversations going forwards? What what are the sort of channels that you're going out there to sort of create the communities to see discussions on?

Conferences Global Reach And Closing Thanks

Debra Ruh 22:25

Yeah, and that's such a good point because the reality is, I don't think we need another system, right? But it's like it's very different being on social media than it used to be, as we all know. I really missed the days when we got to do the tweet chat. That was so powerful. And so many people joined brand new or seasoned. And remember, those were that that was really powerful. So we we I will be honest, say that honestly, we don't completely know because everything's shifting so much, but we're actually talking to one really large organization that has really, really, really accessible communications that most of it we all are all using anyway now. But so we're thinking about because once again, everybody wants to build it themselves. Well, we don't need to build it ourselves. That's not who Billy and Strong is. Billy and Strong is a convener, is bringing us all together. And so we want to work with existing systems out there. I I don't know. Sometimes I wonder if if we're not going to need even more than that. And that's something we're figuring out right now. Or do we even, which we've talked to different groups about, collaborating with others that already have some cool stuff because there are some really cool stuff out there for the disability community. I but a lot of times it feels just to sort of to your point, Neil, it feels like I'm just pushing stuff at you instead of us having these really rich conversations. And I will also say on LinkedIn that I LinkedIn has a 30,000 contact connection, and I've hit that ceiling, unfortunately. But one thing I do on LinkedIn, I respond to every single comment on my posts. And I've had my team say, stop, stop, you're already out. But that is one way that you can really engage truly with the community. So I I think I'm just being honest. We are figuring it out. We want to work with partners, we want to work with uh collaborators that have already built these things instead of duplicating it. But I think that is still something that we need to solve as a community, probably as the world.

Antonio Vieira Santos 24:27

So there are biowards, you are not planning to force everyone to travel around the world and to meet at the big conference somewhere, somewhere in somewhere in a let's say in a in a far place that everyone needs to fly in. So with such a small team and learning also from the fact that sometimes a topic that we discussed several times here on Access Strat is the issue that we sometimes see with accessibility conferences that we all know each other. So how are you able to break that and make sure that this conversation goes beyond the usual suspects? How you are able to find ways to because it requires a lot of work, permanent work. How are you able to make sure that this conversation reached those people who are not aware about what needs to be done in accessibility and how we can bring them to the conversation?

Debra Ruh 25:17

Yeah, and those are really good points. And what we what we're gonna do now is we're gonna work with the existing conferences. For example, we've made this a zero project show. But I mean, it is a really good conference. There's other a lot of other good conferences too. And so we're gonna go where the existing conferences are, is is the thought right now, because why duplicate anything, right? But at the same time, the problem problem with conferences is that so many people can't participate and can't be involved in it. Once again, sorry, Zero Project, but that's one reason why I like them is because they offer a virtual track, right? We can all and I think that's a little bit more difficult. I think that M Enabling was doing that. And there's, I think there's a lot of moving parts to do it, but working with, I think one thing Billion Strong needs to do is go to where the existing conferences are, but not just the big ones, you know, but go to the regional ones and stuff because we are Billion Strong and we're right now there's 115 countries represented. We want all countries represented, but I would love to have a fund that we make sure that every time there's a conference of, you know, that we're there and that we have people that we can send there to represent. And instead of trying to do create our, it's like, oh no, all right, don't go to anybody else's. Only come to no, I I think you use the infrastructure that has been in place, but also you don't just do it with the disability organizations. You start re- I mean conferences, you start reaching out and going to others that makes sense. I believe that's the way to do it. That's the way we're trying right now.

Neil Milliken 26:49

Sounds smart to me. I mean, it you know, you it's it's a it's a lean, bootstrapping way of of getting in there. So of course gonna wish you the best of luck, particularly with the the index and the academic partnerships right behind you, you know, in in wanting everybody in our community to walk the talk. Need to thank our friends at Amazon for sponsoring us, keeping us on air. Yeah, I look forward to this getting out on air and seeing the comments on social media. Wonderful.

Debra Ruh 27:16

Yes. Thank you. Thank you both.