The Art of Building Inclusive Communities

Embark on an enlightening journey with us as we join forces with Debra Ruh, a trailblazer in the disability and accessibility sectors, to dissect the nuances of community building and the art of maintaining diplomatic ties. We promise valuable insights into the strategies that will unite a diverse array of voices and experiences to champion impactful change. Delving into the challenges of advocacy, we lay bare the harsh realities of job insecurity and funding scarcities that threaten initiatives like Billions Strong, while also showcasing the resilience needed to sustain momentum and foster accountability without sparking conflict. 

This episode is a celebration of collaborative spirit and the shared quest for disability inclusion. We analyze the precarious balance between survival and solidarity within organizations, challenging corporate brands and business entities to redefine their roles in this narrative. There's also an optimistic look forward to the power of inclusive events, where individuals with disabilities lead the charge in shaping conversations about their needs. So, join us and Debra as we navigate the complexities of today's accessibility landscape, shedding light on the obstacles, triumphs, and the undying hope for a more inclusive tomorrow.

Chapters

• 0:02 Community Building and Diplomacy in Accessibility
• 13:38 Discussion on Disability Inclusion Collaboration
• 25:43 Inclusive Events

Transcript

Neil Milliken: 0:02

If you go down to the woods today, you're in for a big surprise, because you're going to find Deborah Roo, who is knowledgeable and wise. So hello everyone, we're here for AXS Chat and it's just the three of us and we're going to talk about diplomacy. It was a topic that came up when I was doing a talk, a fireside chat earlier this week with Josh, who runs 3Play Media, and we were talking about it in the context of leadership within organizations. But I think that it actually goes much wider than that, and relationships and the way that we interact with each other within the, the disability and the accessibility community are changing, and the way that we communicate is definitely changing. But also we need to think about how we can bring things together and bring people together in order to affect meaningful change, because we're at an inflection point with technology, with societies, with voting patterns, aging and everything else, so stuff that the ways that we had been doing things they're not necessarily valid anymore, so so how do we bring some of these disparate groups back together?

Neil Milliken: 1:31

We had a platform before. We used to actually do a lot on Twitter and and we spend a lot of time building communities there. Unfortunately, that's kind of unraveled. We still have our chat, but, but generally speaking, there's not that same sense of community. So I'll start with you, deborah. Where do we go now for community building? Because you're building a community with billions strong, but where, where? Where are we going with it? How are we going to build communities that collaborate, that that convene?

Debra Ruh: 2:04

And I appreciate this topic and I agree with you, we used to. We had gotten good at collaborating with each other I mean not across the board, but I think we were having some really good progress. I mean we were talking earlier about the valuable 500. I know a lot of us came together to say, by gosh, if we could get 500 corporations to the World Economic Forum, and so there were times that we were really pulling together. There were and I know we've pulled together in other ways and other activities as well but I agree, times have changed and people are. I I believe from every one that I talked to people are in a lot more trouble now than they ever were before. I know here in the United States people I have people calling me, constantly talking to me they are so scared they're going to lose their jobs stable corporations that they're working for. They are so afraid they're going to lose their jobs, corporations that they're working for. They are so afraid they're going to lose their jobs, and so the amount of fear that has gone up is pretty tremendous.

Debra Ruh: 3:09

But I think also one thing that happened when we were trying to convene more early on and we were having successes Once again we got 500 corporations to agree to at least consider, you know, including us. We have some valuable players that have been involved the Business Disability Forum. They've been doing amazing work for a long time, but we need more. We need to be included. It's almost like maybe we did good at starting but then we got stuck. It's like where do we go from here? And and I you know, as you said, I'm trying to build a global movement, which is very difficult to get funded appropriately, and and the lack of funding going to the places that we, the community, feel the money needs to be gone going to, for example, there are so many times not recently, probably before the pandemic when I saw people getting funded and I thought, oh, why are you funding them? Because I knew the lack of progress that that group was making.

Debra Ruh: 4:26

We've lost direction of where we're going, neil. I think we've lost direction, and so I do think we need to be nice and we need to collaborate, we need to pull each other together, but I think that one thing everybody should stop and ask themselves what are you doing? Are you working to include the community of people with disabilities in an empowering way? Are you part of the community? Are you talking about how you're part of the community? Are you talking about how you're part of the community? What are you doing?

Debra Ruh: 4:47

But it almost feels like now what happens and I see this happening with so many groups and I worry about this happening to a billion strong that isn't funded yet but close is that you have to chase the money and as you're chasing the money, you're really not doing the work or doing the kind of work you really wish you could do. You're not able to collaborate with others like you wish you could, and you're scared. You're scared of whether you're going to have enough money in year two or year three. So there's a lot more fear than ever before.

Neil Milliken: 5:19

So I think that obviously there are significant differences between the sort of climate in different parts of the world. So and I understand the US political climate and the business climate is driving some of that, that's it Right, because you see the deprioritization of topics as woke, you see the deprioritization of topics as woke, oh yes, where actually they're just, you know, they're just wanting to include human beings, right? So, on the other hand, I think there's progress being made in places, certainly in Europe, where the structure is different and the approach is different. So I have reasons to be relatively optimistic.

Neil Milliken: 6:07

At the same time there is this challenge for all organisations that are in the space of being sustainable and having to attract funding, and if it's always a sort of charitable model, the chasing of that funding does detract from the delivering of the benefit to the community. So I think that if we go back to the topic of diplomacy, which was the, the starting point is how do we hold people to account or have the tough conversations? Hold people to account or have the tough conversations without it becoming, without war breaking out effectively? You know, diplomats try to avoid war, but they still have the hard conversations, they still do the work in the background to say, actually, you know what? We find this not to be something acceptable. We need you to do something else and they sort of broker those things. That feels like something that is no longer happening, certainly not in the open, on social media channels or in other sort of communities. It seems to have somewhat dissipated.

Debra Ruh: 7:26

I would say part of the reason why it's dissipated is because I know that I tried doing that. I tried loving on the corporations and really trying to really encourage them to understand they need to, you know, really focus on including all human beings. But then after a while I just I started feeling like a lot of these corporate brands were saying yeah, yeah, yeah, we hear you, we're going to just do these check boxes over here and you need to be grateful. And I also think another problem with the funding and the. I mean we have to state you can't talk about diplomacy without talking about the realities that everybody's facing in this community. And so the community is it's feast or famine. It really is. I remember Stefan at the Valuable 500 said to me you know, deborah, if we weren't blessed to get an investment from the Nippon Foundation, the Valuable 500, we'd be just like y'all at Billion Strong trying to figure out where the money is. And so one thing we need to solve in our community is how can we get funding to the places where they need to be. But that's in any other communities as well. But I also would say, as far as diplomacy goes, I think a lot of our community is. We're just even me who is obnoxiously optimistic.

Debra Ruh: 8:43

I'm sort of getting tired of being a diplomat. I really am. I'm starting. Somebody introduced me the other day as an activist and I thought an activist? And I thought, okay, and I actually feel that's probably that's where I've had to move now. I've had to move to become an activist because too many people are focused on checking the boxes.

Debra Ruh: 9:02

So diplomacy is good and I appreciate diplomacy, but I think maybe I have been way too diplomatic in the past and I'm not going to go out and start attacking because it's not my style, but I think a lot of people are just really sick of waiting and we see people have success and then they forget who, what your name is. You help them drive all these, all this groups and business to them and then they just totally forget who you are. And that's okay. Except, how do you? How do you? How do you have a diplomatic, a diplomatic conversation, a diplomatic conversation? Um, I mean, maybe some of it is just the times. We've got to keep walking through these. We've got to have to navigate through these areas so we can figure out how to be more diplomatic with each other. But I think some of the lack of diplomacy you're seeing is from the frustrations that are being felt in the field, and I have taken all my conversations to LinkedIn. So Twitter X, whatever, but I'm having my most powerful engagements on LinkedIn.

Antonio Santos: 10:12

I'm still on both. I try as many people try the others and we realize that the engagement there is not great. You know my primary focus, you know, over the last let's say, couple months, have been LinkedIn as a slow mode, but I found that there's still value on sharing it on Twitter, because I've actually seen the ability to reach people who are usually not considered part of the community is really a place where you can still reach other people in a kind, in a kind of an interesting way. I have all types of people engaging with me at that level from different sources. When I share snippets and contents from our videos, you know it still works well.

Antonio Santos: 11:07

I got nice replies, nice private messages of people. Yes, I really like this. Thank you for sharing. I get that in a kind of a more organic way that I actually share it on LinkedIn. As you know, we have a kind of a broad community and, like you were telling Deborah, we know that we have many friends and people from organizations in the space of supporting others and diversity. But those groups, they rarely engage with us on LinkedIn, very rarely so, and on Twitter I get they do with me.

Debra Ruh: 11:40

Antonio, yeah, I'm engaged with those groups on LinkedIn.

Antonio Santos: 11:45

No, you are. You are, but some of these organizations that we helped in the past, they rarely engage with us, they rarely pass by. It's almost like you know now we have the money, bye-bye, we don't need you.

Debra Ruh: 11:57

It's a bit like that. Yes, I have seen that as well.

Neil Milliken: 12:02

So I mean, I think that another role of a diplomat is especially for smaller countries, right? So, if we take the country analogy, right, so say I'm Denmark, right, so I'm the diplomat for Denmark. Right, and I need to. Part of my job is to, unfortunately, remind people that we exist, right. Right, so diplomacy is politely reminding people, hey, we're here, we're relevant, right, and I you know. So there is absolutely a place for advocacy and there is a rightful place tiredness amongst the community of waiting in line. Right, because disability is always the last one to be recognised. It's always, you know, and the organisations supporting people with disabilities, supporting the community, are always the last one. And I see in the comments, denmark is a wealthy nation. So, yes, they can afford good diplomats, right, but they're still small and people still forget them.

Neil Milliken: 13:15

Oh, yes, I agree, but the bacon is pretty good.

Antonio Santos: 13:24

Better than Canada's although that's controversial.

Debra Ruh: 13:31

And so the butter, you know, yes, yes, I think the Irish win with the butter Sorry.

Neil Milliken: 13:38

So, yeah, now we're going to cause some diplomatic spat because we're insulting people, but I do think that there's a need for constant dialogue and, yes, we do need to hold people responsible and remind them of commitments and of our presence and of everything else. But sometimes we're looking inwards on our own, within our own ecosystem, and actually, you know, the reason that we're in this situation where everybody's sort of looking for pieces of the cake that is pretty small in the first place, is because we're not doing the diplomatic work outwards um, or or our diplomacy is not being um effective enough to bring the focus to us.

Neil Milliken: 14:37

I don't know. I mean there's. There's an element of both, I think, in that sometimes we've been too fragmented to be taken seriously as a group worth engaging with. It's too difficult. You know who do I talk to? Is it the NFB?

Debra Ruh: 14:59

They might, if I do something wrong, I'm a little nervous, yeah, but at the same time, nfb have done some amazing stuff too, oh no.

Neil Milliken: 15:09

So yeah, absolutely I mean, and frankly we need I'm glad they sued them we need case law sometimes to reinforce. I want them to sue them more often.

Debra Ruh: 15:20

I'm tired of it. I'm just tired of being. I'm tired of it. I am. I'm just tired of these brands not taking us seriously. I'm tired of people, you know, making it only about themselves. And so I think we all have to look, do a lot of soul searching and say you know, because if I help somebody, I don't want to tie myself to their like the rest of their lives and go don't you forget I helped you, Don't you forget which? There's some of that happens. But at the same time, I think what happens to a lot of these groups in and you already said this, Neal when they're trying to get funding to stay alive and you didn't say this, but I'll make this comment Sometimes that funding does absolutely have attachments to it. I think about that.

Debra Ruh: 16:13

At Brilliant Strong, We've worked so hard, we're working so hard with funding, and we actually were staying away from corporate brands because we thought, all right, we're trying to convene, we're not going to ask corporate brands to do this, but corporate brands add a lot of value to these conversations as well, and so I just think we all need to be patient with each other and hope for the best and support each other and what I do very consistently all the time is I'm always promoting other people, and all three of us do that on access chat. We're always bragging about other people's work. We're always bringing them in and saying tell us what you're doing. I think we need to see more of that of people supporting and helping each other, and it is a shame when we see brands in our field business to business groups that don't forget who helped them. But at a certain point I'm less worried about who helped you and more worried about what you're doing to make a difference for this community.

Neil Milliken: 17:12

So I think that we do need to, as a global community, be more collaborative, be more able to lift each other up.

Debra Ruh: 17:28

Yes, yes, don't stomp on each other make a bigger pie.

Neil Milliken: 17:34

Let's not fight over the crumbs. It's difficult, it's very difficult. When it is, we have the mentality of starvation, and when you're and you are starving, organizations that are in the field are on the bread line all of the time. Right, um, and, and, and so the, the, you know, the survival instinct kicks in, and then, of course, you're going to act selfishly, um, because you need to survive, and and yeah, maybe, or maybe you don't, but the organizational instinct is to survive, right.

Neil Milliken: 18:11

So therefore, you know whether or not the world needs the organizations to survive is a different question, but the organization's instincts is that oh yes I agree.

Debra Ruh: 18:22

Well said, well said, neil. I agree. And it complicates things because they need to survive, and they need to survive because they've got to pay their bills. But people are yeah, it's really, it's really horrible what's happening in the community. People with disabilities and people with disabilities are being told by brands which, by the way, I'm telling the community, please don't fall for this but they're being told by these brands and these business to business groups that are supposed to be helping our community be included. They're telling them all you need to do is we'll know who you are, we'll pay for you as a speaker and we'll do this and we'll throw you this.

Debra Ruh: 18:57

That is not the way forward, guys. That is not the way forward. Hoping that a corporation will give you a speaking gig because, by the way, they might give you a couple of speaking gigs and then they'll say, oh, we had you last time. That is not the way forward for our community and it's not even the brands. It's not sustainable for the brands either.

Debra Ruh: 19:17

And so I think our community needs to expect different things from corporate brands and the business to business groups that say they're supporting the inclusion of people with disabilities. We, as the community, we need to expect different things from them than what we're doing. We're playing this really bad game of oh, you included me, yay, okay, but what about the billion other me's behind me? That's not the way forward and that's not even fair for the corporate brands too. So I think we put a lot of pressure on corporate brands to solve these problems for us, when actually most of these problems are societal problems. We as society need to solve them, but, as Neil's saying, we can't solve them by ourselves. We have to collaborate with brands that want to help us, but I think, the days of us expecting business-to-business groups to solve these problems for our community, I just don't have the confidence in those brands anymore.

Neil Milliken: 20:12

I think that they can address the issues in a particular area and that's in the workplace right. I don't think that they can necessarily bring about the, the societal changes and all the other attitudinal ones, because they're required and those require different approaches and, again, collaboration with different groups. So including them.

Neil Milliken: 20:40

Addressing the sort of innate ableism in society doesn't just come by doing business to business stuff. Business is, you know, giving people the opportunities for equal opportunities for meaningful work, with the support that they need because of their disabilities. Absolutely right, you know, making sure that you know the jobs that are available aren't the entry-level ones and you know you can have career progression and you're not pigeon holders. You know, in a particular job, oh yeah, hey, we've met our quota. You know we've hired a bunch of people in intellectual, with intellectual disabilities, in the post room fantastic, you know, right? No, let's, let's look at, you know, let's look at, um, more holistic approaches within work. But then that goes beyond one. Companies can be exemplars, they can have influence on other companies and you can create an ecosystem, but it goes beyond that. It goes to legislators, it goes to the whole sort of education system.

Neil Milliken: 21:45

There's so many different strands to to changing this. I just hope that we're at an inflection point where the change, the generational shift in power that is coming in terms of influence and politics, will act as a catalyst for some of these changes, because I think that we are in a rut. There are certain things that I'm positive about, but I think that in terms of equity in society, we're in a rut and we're in the stages of the pendulum at its furthest point of the swing away from fairness. Maybe not quite yet, maybe it's still got a little bit further to go, depending on how elections work out, but I hope that it's going to take a significant swing in a fairer direction in the not-too-distant future.

Debra Ruh: 22:41

I agree, and I also think, if I know what we're doing at BillionStrong which has shifted pretty dramatically lately, but in positive ways I think if we have a better idea of what the community really needs, then we could work with the corporate brands that do want to work with us. My gosh, so many brands are really fighting to include us and doing amazing things. But I think one thing that the community has to do is we have to come together and convene to make sure that we can tell people in more meaningful ways what are the issues that are stopping you? Because right now, I don't think the community has done that very well. We have not done well to say what do we need to be more meaningfully included? Because right now, I don't think the community has done that very well. We have not done well to say what do we need to be more meaningfully included? We've done it a little bit, but for a lot of it, I think that we've said to corporations and I will speak for the United States, my beautiful country what we did here in the United States was we said you need to include us, and then corporations tried and then they did a crappy job. We thought so we sued you Wrong, try again. Okay, why don't we not do that this time? And this time? Because now we have a ton of data out there. We've all been working our butts off. We have a lot of information out there so you can be successful in including people with disabilities.

Debra Ruh: 24:06

But I think for the brands that we see that are doing check boxes and they're now saying, oh, that's woke and not really doing the right thing by our community, I think we actually need to do more of a convening in the community to say not necessarily we're going to sue you, we're coming from you, but I, as somebody that believes in being nice, I say let's take the corporations that are truly making a difference for us and let's get behind them in ways we've never done before as communities. As a community, we've never done this. If we all came together and we just loved on Atos or we loved on Lloyd's of London, you know because Lloyd's I'm not a customer, but they've done amazing things for us over the years and so, and then what they've done is they've actually done things that they'll do it for the community of people with disabilities and it works so well that they open it up for all their customers. We love these things, and so I think part of the problem that we've had with not moving forward, despite corporations and others trying to and B2B groups, is that the community hasn't had a strong strategic voice to really say no, this is what we need as people that are blind.

Debra Ruh: 25:21

This is what we need as people that have vision loss. This is what we need as the neurodiverse group. This is how you include us, but we've got to be part of the solution. We can't just be on the sidelines saying wrong, you did it wrong. Now I'm going to sue you. Now I'm going to embarrass your brand on social media. Yeah, time to collaborate more.

Antonio Santos: 25:43

A few years ago, there was an event if I'm not mistaken, it was a TEDx event. I think it was in California, I don't know precisely the place, but on this event it was about doctors and it was very focused on the aspects of health and they invited for stage people with disabilities to talk about their conditions. So they reverted the scene. This is not about doctors talking. This is about people with disabilities talking about, and I think that's something that we pretty much need in the events that we have. Like someone mentioned in the conversation, before we start recording, the current events that we have are like clubs.

Debra Ruh: 26:33

Yes.

Antonio Santos: 26:35

Okay, so there's not really a conference or an event that is actually open for people to go and say, no, this is what I need. If you address this, you are actually helping me. No, that usually never happens, correct, so it's important. Are we able to create? Is anyone out there able to go and pick? Okay, let's do an event that we reverse the order, where we listen and let the community talk with us. I haven't seen that happen and that's something that would be very much needed.

Neil Milliken: 27:14

That sort of flipping of the whole approach. I think there were people trying to do it in education as well, because there are the closed shops of professionalism where, you know, we have the professional arrogance of our you know, of our profession. I'm a professional and therefore I know what's best for you and the medical profession being, you know, particularly well known for knowing what's best for us. I think that you know that plays out in lots of areas of society. You know it's why we have the saying nothing about us without us, but it frequently is done without us. And that's where I think that you know we need that strength in diplomacy again, to make sure that we are included in the discussions that we do convene, that we do.

Neil Milliken: 28:19

Yes, you can still have some interactions, but there's not the same kind of scale of interaction and groundswell and, frankly, a lot of people, whilst you still come on and you can have the immediacy on a platform like Twitter which I love and I, you know that was probably the reason I'm still there you don't have the same power that it had before because it's people have left or people have disengaged because of the toxicity that's also there. So, and now, actually, in order to have those conversations on the platform. You need to be even more diplomatic, because essentially, the whole platform is filled with warring factions. So, yes, maybe we need to be thinking about de-escalation techniques in how we deal with some of this, because everything's fragmented and everything's divided, and when that happens we don't make progress Right, but we do have some allies.

Debra Ruh: 29:32

I want to say, and I want to say one more thing before you close and thank our wonderful supporters but I do really think it's important to not make any company, any org, any business to business, any people guilty or bad, Because I think everybody's doing their best, you know. I think you know when you're trying to change the world, it's messy. It's messy. And so I think a lot of the groups that now sometimes I see, and I get a little frustrated with them At the same time, I know how hard they're working and I know how hard they're trying.

Debra Ruh: 30:08

And so what I don't think we should do is say, well, you, which some people are doing, that you know they're dragging, you know your name through the mud, but I don't think we should do that. What I think we should do is stop expecting business to business groups to solve all the problems for our community. Stop expecting corporate brands to solve our identity issues and us. Come together and let's support each other, Because if we could do that and we could really get behind the brands that are truly including us and including the business to business groups that are supporting the corporations and make sure those groups are listening to the community and hiring the community, because I don't see a lot of hiring still happening in those groups either. So I I think we actually maybe we have made some progress and we should be hopeful sorry.

Neil Milliken: 31:00

Yeah, I don't think. I don't think we're going backwards, but sometimes when you're in the trenches it's tough. We know the levels of burnout amongst accessibility professionals and advocates is huge. But at the same time I look back, and I was forced to look back the other day because someone had used an old AXSChat episode as their background for a virtual meeting. Ten years, that's quite scary. That was cool background though. Can we give him?

Debra Ruh: 31:40

a shout out for who did it.

Neil Milliken: 31:42

Yeah, yeah, that was Kurt Jaeger. And boy, were we all good looking then.

Debra Ruh: 31:49

Nice and gray Right.

Neil Milliken: 31:50

Yeah, exactly Shades of gray. So anyway, yeah, where was I going? That's my ADHD kicking in. I do think that we've actually progressed.

Antonio Santos: 32:00

We have progressed.

Neil Milliken: 32:01

But the progress hasn't been fast enough, because we always need to do more and we were coming from a place where we were too far behind. But let's try and find these ways and look at new ways of bringing each other together. So thanks to our friends at Amazon and MyClearTapes for keeping it on there, keeping us captioned, and we'll see you next week.