The Power of Unity in Advocating for Disability Inclusion

Ever wondered how grassroots organizations amplify the voices of marginalized communities? Join us as we shed light on BillionStrong, a global identity organization co-founded by our host, Deborah. This episode offers an insight into their inspiring journey, their recent recognition by LinkedIn, and their future plans. It further elaborates on their mission of making the global disability community more visible to corporations and programs.

As the conversation progresses, we tackle the challenges of consuming global information and the implications of AI databases. The episode underscores the need for a unified voice and the importance of inclusion and diversity in the workplace. You'll hear about the commendable efforts of organizations like Zero Project and companies like Atos, and our perspectives on the importance of systems that foster self-support and independence. So join us, and be part of this enlightening discussion.

Transcript

0:00

AXSCHAT The DNA

NEIL: 0:01

Hi and welcome to Axschat. We are just doing a short update today and actually quizzing Debra. So, as many of you all know, Debra is one of the co-founders of Billion Strong and it's an identity organisation that we are all proud to support. And we have interviewed LeMondre Pough, who is the CEO, on Axschat before. Amazing gentlemen. But Debra, you come to give us an update on what you're up to because things are moving fast.

DEBRA: 0:37

Yes and first of all, I want to say to you too, my host and partners, thank you for letting me do this. And I just am very grateful because I know this is our show together I appreciate it. I also want to say, I appreciate you all for standing by me, as I did this. So, just as a reminder to the audience, I started working on billion strong.org, several years ago. A lot of stuff has happened to all of us during that time. I lost my husband, I lost a couple of brothers, you know, there has been some intensity to me and my team in the world. But, you know, we have continued to build Billion Strong, even though we didn't have funding. And that, by the way is not unusual. Building a new nonprofit or a new NGO, you really have to have a track record before funders want to fund you, which is appropriate. So, we still don't have funding. The only funding, we have received, I will give a huge loving shoutout to LinkedIn for awarding me one of their top first one hundred voices and it was because of the Billion Strong idea that we had. So, they did award us $20,000 that we used, we limped along with it. But, now what we are doing is, we are moving into a new phase. And we really want everyone to join us on all of the social media platforms. We want you to join us on billion strong.org by signing up for it. And we want you to use our hashtag,#wearebillionstrong. So, we still aren't as far along as I wish we are, but we are a grass roots effort. So, it takes time to bring us altogether. So, thank you all for this time.

ANTONIO: 2:19

So, Debra to clarify, is Billion Strong a nature company. Is Billion Strong a consultancy company, what is Billion Strong?

DEBRA: 2:32

Well and thank you for asking that question because we are not a consulting company. We are not. We are not trying to compete with anything out in this space. Billion Strong is, I believe, the world's first global identity organisation, where we come together with pride and we show what we are doing. We talk about what we are doing. So, for example, we have so far and I have got to get the rest, we have 96 country partners, that are organisations of persons with disability. So, what we want to do is we don't want to offer consulting. We want to showcase who we are, so we can become discoverable to corporations that want to hire us, to programmes like the Valuable 500. Our community, 75 to 80% of our community have hidden disabilities. We are 1.3 to 1.7 Billion Strong, but where are we? And so, I really want to bring the community together. What we want to do is we want to showcase work on our websites and our social media platforms. But, to be honest, we have not done that yet because we keep running out of money. Because Ruh Global Impact is the one that's doing that. We have used all the money that we have. But it is not a consulting group, Antonio, we don't want to compete.

ANTONIO: 3:51

So, what you want, you want to bring and feature stories from people with disabilities around the world.

DEBRA: 3:58

Yes.

ANTONIO: 3:59

And let people know what is happening in Costa Rica, what is happening in Germany, what is happening in wherever the country you are talking about.

DEBRA: 4:08

In Gyana. Right. Because it seems like, when we talk about disability inclusion and I'm so glad this is the case, but often the voices seem to be coming from the United States and the United Kingdom. We are seeing more voices coming from Europe. We are seeing voices. But we are Billion Strong and so the reality is we all need to come together and hear all of the voices. And, you see, yes, go ahead, Antonio.

ANTONIO: 4:34

No, no it's true because we know that media, in the United States, have a huge impact on everything that we consume. So, people in those countries end up having a louder voice than people who might be in countries who are not nonspeaking English countries, where the news and updates and information, doesn't reach those media that have great impact.

DEBRA: 5:00

That's what I'm saying and you know, I remember Antonio, even, you were making comments to me one time, as an American would, you know, we are friends, we've been friends a long time. But you were saying the reality is, Debra that often these social media platforms that were created in the United States are showing preference to the US voices. And I was like, no, they are not. But then I really started thinking about it, just because you don't want that to be the case, Debra doesn't mean that isn't the case. So, I just, once again as I continue to learn as a person, I see that actually that is the case and there are preferential treatment being shown to certain countries, including my county. And so, yay for me but the problem is I don't want that. I really want us to really see who are the leaders in other countries. And I will give you an example, I will just pick on, I love artificial intelligence, writing with artificial intelligence. And I was looking, there is this one project we are working on and I was looking to convene the leaders that are blind throughout the world. And I just wanted a handful of them. I wanted about 12 of these leaders. And so, I got, just because we are going to have a convening conversation. But I want people to have a lot of experience and really understand what the problems are for that part of the community. And so, I was given a list by other experts but all of the list were male, which is great, they were all white. Okay, that's fine. They all lived in the US or the UK. They all were blind. Okay. But I also, at the same time, I was like, well, where are the women leaders because I know we are there and where are the brown and black and where are the ones that are not living in the UK or the US? And so, I know who some of those leaders are and so I went to artificial intelligence, I went to Chat GBT and I asked, who are the leaders that are blind, that are not in the US or not the UK, that are really having impact for the community, living with vision loss and blindness? And artificial intelligence very nicely told me, so much wonderful activities happening, so much is happening but could not give me one name. Not one name. So, what I did, I put in some names so that GBT could now this. But that right then tells you a lot. Doesn't that tell you everything you need about our community. We are not discoverable.

NEIL: 7:35

So, a major point and I think that purpose of the Billion Strong is to raise up those voices and to be discoverable and that is a different purpose from many of the organisations that are already out there. There are people doing and organisations doing good work.

DEBRA: 7:56

Oh yes.

NEIL: 7:58

In the space. There are organisations doing market research that are running panels and paying people with disabilities to give their insight into those panels. There are organisations that are convening CEOs and business leaders to engage on disabilities. All of these things are great, right. I'm engaged in many of them. But that's not the same as identity. And it's not the same, even if they are engaged in identity, it's not identity of the totality of the community. It's thinking about things like self ID in the workplace, which is a super important topic that energises me and frightens me at the same time and challenges me daily. But it's not the same as what you're talking about here, which is giving everybody a voice. So, I think that when people ask me, well isn't what Debra is doing competing with X. Well, no, not really, it's not the same thing. But, how do you raise up those voices? So, you know, obviously you have got a loud voice anyway. I'm not calling you a loudmouth. I mean, you have a large presence on social media. So, but social media is quite fragmented. So, what are the ways that you are wanting to get this across and amplify that voices?

DEBRA: 9:15

Well and that's and thank you for making those really good points Neil. One thing I thought we could do was because I've a big voice and I'm blessed with a good reach partially because of our work with Axschat. But I thought, silly me, was that all I could do was tell everybody what I was trying to do and they would just rush and give me their emails, well, it doesn't work that way, Debra. Especially during a time of great intensity, COVID, pandemics, deaths. And so, I thought, I know we'll do a hashtag. We are a Billion Strong. But even Antonio was saying, yes, I hear you Debra, but starting a new hashtag is easier said than done. And so, it's something that I am trying to figure out how do you really do it in this changing market and in these changing times. But I think once again is you just start showing who we are and you start talking about what we are trying to do. Antonio, you look like you want to come in. Let me give you time.

ANTONIO: 10:13

No, something that I've been, you know, using Chat GBT and other platforms to do research, something that I found is that it's very difficult to find websites with news and updates, on accessibility that have been indexed on the platforms. You need to do a kind of an extra effort to find them in order to get the news from their feeds. Even when you use a method that allows you to browse on the web, it is very difficult to find them. So, we might have two problems. We might have a problem on the SCO and on the way how those sites are built. But we also have a problem when they are some indexation done out there. So, it's important trying to find a way to fix that.

DEBRA: 11:07

I agree. And I think also the problem is, which I personally do not know how to solve this. So, I'm looking forward to you two telling me. But another thing is, you get different search results depending on what country you are in, even where you are in that country. So, if you are perceived as living in a more influential area, you're going to get different results than you're going to get in an area not quite as influential, say just in the States. So, we get different results when we search.

ANTONIO: 11:41

This idea of personalising your experience has, its cons, you know and this is one of them. You know, when I travel to Germany, when I'm in Portugal or when I'm in Ireland. Sometimes I get into locked into the Google within Portugal. So, the results that I get are completely different when I come to Ireland and sometimes I'm looking for information that is in the United States and that is not -- so it's really a challenge you know. And that's sometimes limits the experience of when you want to consume information, read information or when you want to know what is happening around the world.

DEBRA: 12:24

Right and are we going to decide, as a world that the, you know, that the artificial intelligence data bases that are being created by the Googles and the Chat GBTs and all those, do they get to decide what all the data is going to be. I don't know. I want us contributing. I want us, I want to find where we are. I mean I know we have been doing Axschat for almost ten years and at the beginning when we were so naïve, we were like, oh, we'll do it for a few years. And they won't need us anymore. But so far, that hasn't happened. So, who really are we. You see a lot of efforts. Even somebody that we all love, Zero Project. Zero Project has done so many wonderful things, really trying to figure out what is happening in developing countries, who is doing what and pulling us together. So, there is efforts being made but still I believe that we must come together with strength, pride and really with our lived experiences with disabilities to be heard in a different way because, we know the voices are out there. But still the voices are being heard, seems to just be the traditional voices that were heard. I am not sure how, if that's really the best thing for us to do as society because if we all came together, we could really, really make a big difference but it's not to come together to compete. It's to come together to be discoverable. So, you know, we talk about things like the Valuable 500 on this. I think it's fabulous that readers and yes, I'm going to do ATOS. I'm going to give ATOS some love on this. I appreciate that brands like ATOS stepped up and joined the Valuable 500 and not just joined the Valuable 500 but took the time to say, oh, but we are doing all this and by the way, we are going to join your programmes, for example, ATOS is one of the I forget, 38 companies, excuse me, that number is probably wrong, that of the 500, that said, we will do Generation Valuable. And so, they are actually doing that. I want to know about at my community, not just because I happen to know some people working at ATOS, but because I want to know the brands that are deliberately trying to include us. I want my community to know that. I want to know that if you go to billion strong.org, if you go there that and you see people talking about our community, you can feel pretty confident they are in our community. I might not identify to you, I will of course. But I might not say I have ADHD but you go there and you will be able to discover where we are. So, we don't want to compete with our community. We want to make our community discoverable. But not just the community that is discoverable now. But where are our leaders in Bangladesh? Where are our leaders in Guyana? Where are our leaders in Panama? Where are our leaders. What if we all came together and said, and we just recorded a show on Axschat that you all get to see where we feature Stephanie from Costa Rica and she made a comment that what they did in Costa Rica was, they went and visited Spain. They visited the UK. They liked what they were seeing. So, they actually took the laws that the UK created and Spain created and they translated them into Costa Rican, which you know, is Spanish but still. They have culturally, they use language a little different from others. And so, and then they submitted it, right? And now they are actually.

ANTONIO: 15:53

And Debra, that was a very smart way to make sure that when someone travels to Costa Rica, the expectations of what they mean by being having an accessible experience, matches.

DEBRA: 16:09

Right.

ANTONIO: 16:10

The places where they are coming from. Because you know, even today when we talk about the word accessibility online, sometimes people are not really talking about the accessibility, in the context of disability. They are talking about something else, about something that is being available. So, that is really, really important because that creates trust with the agencies, with the travel agencies and it's, it was a very smart move to do.

NEIL: 16:37

Yes, I agree.

DEBRA: 16:39

It was.

NEIL: 16:40

I also just like the fact that she is community minded and that she is building up communities that become self-sustaining because I think that the thing that we have seen in our broad community, is that it's not self-sustaining that we have this charitable model which always relies on continuous donations. It's not that donation is in itself bad. And we discussed this a few weeks back with Kurt Jaeger but it's that it requires you to go back for more. And so, what you need to be doing with the money you get for donations is investing it in not fixing an issue for an individual but fixing the system and building systems that become supporting and enable people to be self-supporting and --

DEBRA: 17:44

Right.

NEIL: 17:45

And independent and part of our society because there is this mentality of scarcity all the time.

DEBRA: 17:54

Right. And you know what also I see, I see it and I've heard it. I often hear corporations, the representatives of corporations around the world, they will come to me and they'll say Debra, this is ridiculous, I don't know who to fund. You're coming at us, as a corporation, you know, people representing deaf and oh, no, representing blind. He said and you won't even work together. I remember being in a meeting in the White House, during the Obama Administration and they had brought together and some you leaders will remember this meeting, they brought together about eight of us, global experts well, US experts because we were talking about the US and they brought in different groups and so, then they said okay, what is your priorities and immediately around the table, the different groups started arguing. Well, no what are the priorities? Speaking for the blind, well, no our priorities and we were not speaking as one group and they said to us, I was very embarrassed. They said, okay, why don't you all get together and figure out what your priorities are and let us know. But we don't have time to sit in here listen to you all argue because we also are meeting with our Latin Americans and our Asian Americas and our LGBT and all of our diverse groups. So, you with disabilities you all figure out what your priorities are and come back to us. That's what keep happening. We keep saying to corporations, the Valuable 500, all you leaders that got together, you all need to solve our biggest problems in the world. No, let us come together. Let us come out and be discoverable so these corporations can hire us and include us. Let's stop expecting other people to fix this for us. If we came together with pride about our lived experience's identity instead of the people deciding we are broken and we'll hide it. No, if you have met me, you will know I have ADHD. Obviously I am Neurodiverse. I am constantly interrupting things but I also get a lot done. But I think we need to come together, so we can be discoverable. So, corporations can hire us. So governments can meaningfully include us. So, educators can educate us. We are Billion Strong, we are. Why do we not come together and support ourselves and then help guide the way forward from our community grass roots perspective. Not trying to duplicate what others are doing. But to celebrate what others are doing. I think that's the way to do it. I think that's the way to do it. So, you all let me talk about this. So, I would ask do this ask. Please, please, please follow Billion Strong. It's not as active as it needs to be on social media because you know, we are still working on that. Follow, please use the hash stag#wearebillionstrong.

ANTONIO: 20:51

And follow the hashtag on LinkedIn. Search for the hashtag and click follow on the hashtag.

DEBRA: 20:57

Follow the hashtag, right and that's something I just realised I had not been doing. But also, I want to say please also use#AXSchat because we also appreciate you using that hashtag. So, I'm not saying don't use your other hashtags. Use disability inclusion. Use STG's, use the Value 500. Use whatever hashtag. But please do use#wearebillionstrong because if you are a person living with disabilities, you are a part of our community. If you're a parent. If you're an ally, everyone is welcome. If you're part of the diversity, the intersections, a woman with disabilities, a woman that's part of the LGBT communities with disabilities. You are part of our community. We are all stronger together. Anyway, I know we know this but I really appreciate you two letting me talk.

NEIL: 21:42

No, no it's important we bring the community together and get the news out there.

ANTONIO: 21:48

We have to respect the fifth Axschat amendment that allows you to speak this way.

DEBRA: 21:57

That's right.

NEIL: 21:59

Yes. Excellent. Great, we're just boosting our voices collectively.

DEBRA: 22:05

Yes. And also let us say on Axschat, we really are so grateful for My Cleartext. They have been with us from us beginning, taking care of us and we love you and also Amazon, thank you, thank you, thank you for supporting Axschat too. Yes, lots of love and Antonio, are you going to make it work with your new toy, come on. I want to see those hearts go through. We love technology. We just want to be accessible for everybody.

NEIL: 22:34

Yes, excellent.

DEBRA: 22:36

Okay, thank you.

ANTONIO: 22:37

Bye, bye