AXSChat Podcast

Beyond Tokenism Exploring True Access and Equality

January 17, 2024 Antonio Santos, Debra Ruh, Neil Milliken
AXSChat Podcast
Beyond Tokenism Exploring True Access and Equality
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Show Notes Transcript Chapter Markers

When we consider the fabric of our society, it's easy to miss the threads that are only partially woven into the whole, particularly when it comes to the inclusion of individuals with disabilities. Join Antonio, Debra and Neil from axschat to unravel the misconceptions and realities of partial inclusion, where tokenistic gestures often replace genuine integration. We scrutinize the current legislative landscape, examining its efficacy and questioning whether it inadvertently overlooks those in dire need of support. With a reflective eye, we peel back layers to reveal the stark difference between meeting minimum standards and embracing true inclusion.

Venturing further into the heart of the matter, we confront the monumental challenges of creating inclusive experiences within corporate structures. We acknowledge the pivotal role that design plays in mental health and the essential need for equivalent access to products and services. The conversation pivots to consider the weight of responsibility designers and companies bear when their creations fall short, potentially fostering negative self-perceptions and mental health crises. It's a candid discussion on the broader societal implications of these systemic issues and the urgency of strategic shifts to avoid perpetuating exclusion.

In our final segment, we tackle the disparities present in healthcare systems and their impact on families touched by disabilities. From personal anecdotes to global investment trends, we explore how equitable resource distribution is often more of an ideal than a reality. We confront the punitive nature of systems that discourage employment among those with disabilities, and advocate for systemic changes that support rather than stifle individual potential. With a nod to the importance of accurate data in addressing healthcare challenges, we close by acknowledging the support that keeps our conversations alive and our community engaged.

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AXSCHAT Partial Inclusion

NEIL:

Hello and welcome to Axschat. And today we have a topic that's been put forward by Debra put forward by Debra, which is talking about the idea of partial inclusion. Now, I am going to hand straight over to Debra, who I think you know, so needs no introduction. And Debra, tell us, what do you mean by this?

DEBRA:

Well, and I also want to say that we are also playing around with you know, we always want to update what we are doing as Axschat. I believe we are on our tenth year, so I am hoping that we do more of these conversations, where it's just the three of us because, you know, we are all leaders in our own right and I think that it's sometimes really interesting just hearing from the three of us and I'm excited about the conversation. But I recently wrote a blog on LinkedIn and it was called,"Partial Inclusion," and the reason why I wrote it is, I keep hearing people say the same thing, that by the way, I'm also guilty of saying, many, many, many times but I just stop saying it after a while, when I started realising the errors of what I was saying. And so, what I'm talking about, I was talking to somebody the other day and they said, you know, Debra, I don't know why these corporate brands don't understand that if do not include people with disabilities, you're leaving tonnes of money on the table. You're just leaving it, wasted, these people are just not being included at all and you're just losing of trillions of dollars. It's ridiculous why don't you care about the money to include us. Well, the reality is, that is not really true. What is happening is we are partially included because the reality is people with disabilities, yes, they are Billion Strong, but the reality is we still have to bank and we still have to, we want to go to school. We still have to, you know, work in the office and we want to go to libraries and we want to go out to eat and we want to be part of society. But society makes it so much harder for us to be part of this by making banks that are not really accessible to us and so, we have to do all these works around to get basic services from the bank and forget about upselling us bank, we can barely do what we critically need to do because you've made it so hard for us humans, sometimes with disabilities to use your services. So, it is not total exclusion. It's partial inclusion and partial exclusion and the reality is this is not good for society or any of our business or brands either. And so, I posted that, just because I was curious if other people also felt this way. And it really got a lot of really powerful responses and I think we need to talk about it more because the reality is partial inclusion, it also has, you know, the way it lays out, it is very different from you're fully excluded, okay fine. Well, you have been excluded forever so we are going to give you this tiny little thing over here and you're supposed to be grateful. We want to be fully. We want to be meaningfully included and so I think that's why it's important to dig into these topics a little bit deeper now. So, what do you think about that, Antonio?

ANTONIO:

So, Debra I've a question for you, how do you think the current legislation that we have is actually, helps us and entities, not to fully include people with disabilities, isn't legislation responsible for people only doing that partial part of inclusion?

DEBRA:

Yes, I agree. I think that, we are first of all, legislation failing us because for example, I love being American, I love being American, but I really don't like how we have defined disabilities in the United States. We have made it so broad and I get it, people don't want to be disenfranchised and left out, but we've made it so broad. Even the UN CRPD, sometimes I wonder, the definitions are so broad that actually, we wind up leaving so many more people out and not really being able to focus on the real problem because there are people with disabilities, certain types of disabilities, that are definitely left out in record numbers, compared to other parts of the community that may be, we haven't been left out as much. Someone like me, that's neurodiverse. I wasn't left out but I wasn't as meaningfully included, as I could've been, to add more value. But it was because I was just little, you know, too neurodiverse, too talkative, too this, too that. And I haven't been accommodated, but I didn't even realise I was part of the community to be accommodated, blah, blah, blah. But I still was included. There were people that were never included and are still not being included and so, I think the legislation not only gives people ways out, as you're saying, Antonio and wiggle room but it also doesn't even address the problem that we are actually trying to solve, which is true meaningful inclusion.

ANTONIO:

I was talking to a person today on Instagram that is doing she is going to moderate a debate, a panel in the Portuguese television about the European disability card. And then, I am engaging with many of the people who represented Portuguese institutions in EU, in the EU accessible programmes or even this, they are there to represent organisations and many don't identify themselves as having a disability. This has been very common in Portugal, where someone represents people with disability and they are the ones attending all these meetings and of course, the problem of, this is part of the issue that also leads to partial inclusion because people don't sometimes you might be in the meeting, where we might be talking or addressing issues with people with disabilities and a large percentage of people in the room don't have a disability and they are the ones representing the communities.

DEBRA:

Right and or they do have a disability but they don't want to admit.

ANTONIO:

Yes, of course.

DEBRA:

For a couple of reasons, maybe because they think if I'm admitting it, it sounds like I'm just finding a reason to be included. It's just a token disability because we're also told that. Well, your disability is not as valuable as my disability. I remember there have been times in my daughter's life, my daughter with Down Syndrome, where she was too disabled or not disabled enough to make some cut. And I just remember thinking, this does make sense to me. And so, yes I think that's also a huge part of the partial. And you know at some point, Antonio and Neil, we really do at some point, have to talk about, what are the problems we are trying to solve because it feels like as we have been throwing so much at it to solve all the problems, it's starting to feel like we are not even solving the right problems. And once again I always say, I find it fascinating and I'm one of them that have done this, that we demand the corporations, we demand the corporations solve our societal problems. We want you to solve them right now and you want to start including us meaningfully. And you need to fix the technology. But the reality is we have all let this happen. We have all let it happen. And some of it, I let happen on my watch too because you just feel that the problems are too big, you don't even know how to begin to solve them; Right. But I think talking about what is really going on is a good way to start talking about this. We are partially included.

ANTONIO:

That's why when we, when you're talking about that, you know, we don't know where to start, that is why I get really, really annoyed when the conversation starts with standards.

DEBRA:

Oh, I agree. I agree you're right.

NEIL:

Right. So, I think this relates back to some of the conversations that I had ages ago with Kevin Carey, who used be to be the Chair of RNIB and he talked about, well yes, okay, you can have standards and they work for things like technology and inter-operability and certain things but they don't work for others and they don't really give you a measure of what it is to be included. He said really it's what he called and it's kind of an academic term, but peer normative equivalence of experience. So, it's like is the experience that I have of a product or service as good, as easy as someone else? And frankly, even the technically accessible products and services don't give you that same equivalence a lot of the time. So, it's not equity. It's not equal in that way. And I think that that means that even when organisations you know, like mine work hard towards, you know, meeting our legal requirements and doing the compliance and making sure that we do the work to try and make everything work together, which in technology is actually pretty hard, when you look at the complexity of large organisations. We still don't give you know that equivalence of experience a lot of the time. Other than sometimes, you know actually an enterprise, everything is equally crappy because it's you know, enterprise tech is, you know the experience of you know, employees in the workplace and of technology is not as good as some of the consumer tech, frankly. So, you can have an equally crappy experience. So, you can and I think that then actually, even regardless of disability, it can come down to technological literacy or your propensity. You can be partially included. You know, we partially include people in company life by putting stuff on channels and this is not just my organisation but

DEBRA:

It's everybody.

NEIL:

Everybody. On channels that people don't see or don't interact with or don't use. People are partially included. In theory, you can access it. But in reality, you know, that is not necessarily the case. So, I think there is very few cases where you have full inclusion because society has so many differences. People do things in so many different ways that you know that the way that people experience things is going to be different.

DEBRA:

Right.

NEIL:

Of course, when it comes to you know our core topic of including people with disabilities, then you know, especially for you know, essential services then there has to be that effort made to make it, you know, as close to equivalent as possible, so that people can access those services. So, for banking, for government, for all of these kinds of things. And I think that efforts have been made in government. So, some of our, you know, our online services and you know, applying for a passport or you know, a new driver's licence in the UK, pretty easy these days online and pretty accessible. Would I say it's a joyous experience, no. But it's functional. But I think that there is so much else of our life that goes on and where there is that partial inclusion that it is difficult to address. So, how would you suggest we go about determining what level of inclusion or exclusion is permissible or acceptable because that is the reason we end up with standards because we have to have some kind of benchmark that people can kind of agree on and they are imperfect.

DEBRA:

Right. And you know what, before I go there, I just want to make another comment, you know what we also do to each other is when we are partially included and we are making it harder for people to do the basic things they need to do, people have a tendency to think they are stupid, something is wrong with them. And that is happens a lot. As we see that we are doing that to each other as we are aging as well. I'm a woman of a certain age now. And I notice that we are making our systems inaccessible to humans because we are being careless. We are not really designing in a way that is really inclusive to all humans. And so, these partial inclusions happen and then you call to get help and you're yelled at almost by or people are being impatient with you because you are so slow. So, people make it about themselves that somehow they failed. And I see that a lot and that's really impacting our mental health and sadly, sadly here in the United States, last year 2023 was our highest number of suicides ever, on record. And so, I just want to say, there are also human cost, to these poor designs. There are human costs for people blaming themselves for being too stupid that they can't keep up with society and I think that's a huge issue as well. And just going back to what you said, is should it always be about standards. We made it about standards. You know, we made about the laws and we made about standards and here in the United States, we made it about lawyers, you better include us or I'm going to sue you. Well, you know we tried doing that and actually, as a world we progressed. We progressed in some ways. We progressed but I think we progressed as far as we can with those outdated ways of thinking about these topics. Once again, what are we trying to solve here? I know that last week, we were or the other week, we were talking to Mike Gifford and he brought up a term I had not been familiar with, which is a planet centred design and so, I went out and started looking at it and I loved what they are talking about because you know, it's not possible, I think know everything that's happening right now and how AI is joining these conversations meaningfully or not meaningfully but still, it's almost causing data to move faster than ever before. And so, I think it's important to have these conversations to understand that the way we are doing it now, with only looking at legislation and standards and or here in the States, lawyers it is not meeting the needs of the people. It's just not meeting the needs of the problems we are trying to solve, the gaps we are trying to close, the divides we are trying to narrow. It's not working. And so, I think we have to and the one reason why I think it's important to talk about partial inclusion is because, when we say to big corporations, I mean you two represent a gigantic billion-dollar representation, when we say to the leaders and the representatives of these organisations. Well, you're leaving now a billion people. And you're losing money. You don't believe us because we can't ground it. It's like, what, really are you sure? And so, instead I think we need to talk about what the real problems are, when you do not make sure that your systems and your technology works for all of your customers. All of your potential customers. You make our lives harder. You make it harder for us to do business with you. You make it harder for us to buy from you. Maybe you do want all your new cool little upgrades and upsells. We can't even get basic services. That's a huge problem that I really need we need to rethink.

NEIL:

Yes.

DEBRA:

At least, let's use the right language. Let's at least say what the problem is. That's the problem? We are partially included, partially least included. Some of us more included than others. Some of us are more privileged. And so, we get better inclusion. Some of us don't. Let's solve those problems. But no, a billion people haven't been one 100% left out. No.

NEIL:

NO. And that is where context is also important, situational context.

DEBRA:

Yes, yes.

NEIL:

You know, geographical, class gender, you know all of those things play a role into how greatly or otherwise you are included or excluded. Those levels of privilege, also you know, the situation that you find yourself in. You know whether or not you're tired and stressed and there is other stuff going on in your life can impact. Especially with cognitive disabilities, how well you're able to include yourself right because sometimes when you're firing on all cylinders, you can work your way around these things and they don't became barriers or you know, they are barriers that are not, too high. So, you can step over them and join the party and then other times, when you're under stretched, you're tired. You know, the brain fog kicks in. Those barriers became insurmountable. You find yourself excluded and I think that you know, with an aging society, we are building lots and lots of systems, where there is that peril again.

DEBRA:

Yes.

NEIL:

There is a load of people that don't consider themselves to be disabled. You know, maybe don't even qualify under the definition of disability precisely but that find themselves partially included. Partially excluded, you know.

DEBRA:

Right.

NEIL:

And that still has a cost. It is them defining it, right. So, how do we you know, get the buy in that you have this intangible thing because people like stuff that's measurable. They like hard numbers. How do you then define what that is? What good looks like and you come up with a plan for getting some of the way there with the, you know, with the funds available and you know.

DEBRA:

I think you know, yes, I think that's a wonderful question, sorry to step on you, I think that's a great question and I have been very open about how we've struggled, with the work that I am doing, my Billion Strong team and global impact. How we have struggled with funding because there is a lot of funding that is being spent on funding people with disabilities, funding trillions of dollars all over the world. But I think sometimes the community doesn't see the benefits from those efforts. I know, just speaking as a mother of a daughter with Down Syndrome, at 36 that has some health problems and everything, my family walked and I know more than most people and it has been so difficult. It has been so difficult, and I think and yet, we must have it so much easier than everybody else. And so, the reality is, I think we at least have to, we have to start talking about what the real problems are, so that we can then say all right, how do we deal with this. But, I also think, as I've been looking around and trying to figure out, how do we really do a better job with this? How do we get this funded and things like that? There are actually groups that are really, really focusing on this now. We are seeing impact investments happening. We are starting to see some things. I'm going to have some real exciting announcements coming out the next couple of months and we are seeing money that really does want to be used for good and that money is saying, well, all right, you have all been saying we aren't doing it right, how should we do it? But I believe the way to do it, we got to join the conversations and make sure more voices are heard, so that, it's just not Debra Ruh speaking for everybody else or it's just not whatever. It's got to be more of us coming together. So, I think honestly and I hate to be optimistic but I think we are starting to head in the right direction. At least, we are having these kinds of conversations. You know, where it's like, okay, let's put it out there. It's not complete exclusion but the exclusion that we do have is not good for you either brand. It's not good for you either. It's not good for society and it's certainly not good for the individuals that it's impacting and all of the family members and friends around them that are being impacted.

NEIL:

What I am also hopeful that there is movement towards more effective investment in stuff to move forwards rather than just investing in making noise. I think we need to put investments into looking at structural issues and those kinds of things and how stuff connects because it is, as we have been talking about for over a decade now, extremely siloed and despite all of money that does get allocated, there is this, you know scarcity mentality, which causes people to continue to silo, circle the wagons and fight for their slice of the pie. And I am still going back and you know, to the conversations we had with Kurt Jaeger, just before Christmas which I thought was really interesting because his approach was about growing, you know, it was about growing money and using the money to continue to push the aims. So, it's that positive investment and it's rather than it always being about you know, money coming back out and asking for more money. It's about becoming self-sustaining, to be able to maintain the momentum because you know, we have seen you know, a lot of cutbacks in central government funding around the world, you know. They are not investing, right. So, then people go shaking the tin and it's difficult because everybody believes that they have a good cause. They probably do. And everybody believes that they deserve the money.

DEBRA:

Right.

NEIL:

Which they probably do. But there is only so much money to go around and people get you know charity fatigue.

DEBRA:

Gosh, I agree. I agree.

NEIL:

You know another telethon. Please don't come and ask me again.

DEBRA:

Crowd sourcing, oh yeah.

ANTONIO:

But I think we have also a small problem in the other end, is that in many systems around the world, people might are penalised if they work, they lose their benefits. If they decide to go into an entrepreneurial journey, I'm not saying that they are going to succeed, even testing. Let's see if I'm going to be able to, I'm going to try to create a business and I'm going to try to see if this works. Just the process of trying is going to penalise the person.

NEIL:

So, you can't. You're precluded from being able to be, play a full and functional role in the labour force because of the way that systems set up and by the way, I don't want my previous comments to make people think that I don't even was to give or participate but, people are you know done, it's done systemically and what is happened is we've relied on individuals all of the time and we are relying on philanthropy. Why is it that we you know, we pay taxes and all of the rest of it but we are asking individuals to support, feed people; right? To provide wheelchairs for people, to buy basic medicines to keep people alive. I am thinking of the I always feel conflicted because, for example, you know, there are advocates in our community that are dependent on the goodwill of the community to stay alive to be able to.

DEBRA:

Yes, there's a problem with that too; right. The work matters.

NEIL:

You know, I can't do it for everyone. This needs to have a systemic joined up approach to it.

DEBRA:

I agree.

ANTONIO:

And that becomes even more strange when that need comes from people living in the most wealthy countries on the planet, when people living in countries, who have a different health care structure, that's not the case. So, people get confused you know, why do you need that type of support in that country, considering all the wealth and all the power that country seems to have.

NEIL:

Yes.

DEBRA:

Yes.

NEIL:

So, I mean that is the inequity is astounding. And I think that drives exclusion. You know, these are you know, what the social determinates of health that we often see. But some of those are driven by social policy, as well. So, you know, even in the UK which still does have the remnants of a, you know, a national health service, it's definitely a two or three tier system and that impacts on people's ability to access services, to be able to participate in society. So, if you can pay, you can get, you know a diagnosis for ADHD or another neuro divergent condition and you get support. But, if you can't, you wait four years, maybe that's the four years that are crucial to your education. It means you'll never be getting the qualifications that you need to be able to get the jobs that would enable you to succeed in life, had you had the support, at the beginning. You know. And that is the difference that maybe £400 would make.£400 is not a lot for the State but it's a lot for many families that you know, are thinking about heating and eating and lighting and all the rest of it. So, it has that massive, long knock-on effect.

ANTONIO:

But those €400 might not be much for the State now but probably 20 years from now, those €400 that government is not willing to spend will be, you know, it would triple in terms of the support that they might need to provide to that person.

DEBRA:

Yes.

NEIL:

Oh, it is more than that because when people don't get diagnosed, they end up in the penal system and the cost of keeping people in prison is enormous. So, what happens is by saving a small amount of money right now, we are pushing the cost and magnifying it, further down the line. But I think that this is not, you know, not a unique problem to one country.

DEBRA:

No, no, no.

NEIL:

It's endemic in politics and one of the challenges, in any organisation, in any country, if you have an electoral cycle, stuff is driven by elections, even in China, where they have a one-party State. Things are still driven by the internal calendar of the Chinese communist parties. So, the people that make decisions that drive society are always looking to these points, which pushes away from long termism and investment in some of these things. I think that, you know, the Scandinavia models have generally been quite good and more long term and the happiness and the gap between rich and poor is also significantly less and people feel more included.

DEBRA:

And also, I also think that we have to realise that we are not solving the right problems anymore. So, you know when we look at the way, just using that example you were using with the UK government, it is so cumbersome, there is no way they can ever make that work. There are other ways we can actually do it so that people don't have to ask for the extra support. The support is blended in the way we are looking at the individuals. So, I am just saying that we are trying to solve these old problems in the same way, in a broken system. So, what we actually do is really need to do what we are doing. We need to be rethinking and asking, are we solving the right problem? Wait a minute, by the way, the problem is not that a billion people have been 100% left out. The problem is they are partially included. Huh, we should solve the problems based on the data. That's what I'm hoping for. Now, that we have the AI, good bad or whatever, could we use the AI to even help solve the problems in different ways to allow humans to work on this, to solve the real problems. Anyway, this is a good time to be exploring what are the real problems and now, how do we take everything we are doing and start applying it to those problems instead of trying to solve something that is wrong.

ANTONIO:

Sometimes, I've some conflicting issues when people start talking about the need for data. Okay? Just because if we just follow our journey as humans from when to we are born to when we are old, you know, I think it's, why is this is happening for thousands of years, in the exact same way. We know what is happening, why people age. So, it's you know, we know that consequences of life you know, we are not machines. So, you know, I do understand that, if we were machines, we might need data to identify the faults of the machines, that they might have but we are not machines, so sometimes I get conflicted with internal conflict when we start talking about, we need data. When sometimes we only need to look around society to look to the data that already exists, like demographics, that we tend to ignore you know, for many years that we know, in Europe that in many countries’ societies are aging. You know that since the 70s , you know and progress and sometimes I see some posts or conversations today, almost like if nobody was aware that that was coming, you know, when we talk about that, you know the health care services, are overcrowded. You know, too many older people get sick with the flu. So, that's a bit of it.

DEBRA:

I agree. I know we've got to close but I just want to make one real quick comment and just say that I agree with you about the data but at the same time, when we're using wrong data and stuff, that's also really making things worse so, actually, if we are going to go after the data, let's actually get the accurate data and I know you agree with and I know we need to close, Neil. Back to you.

NEIL:

Yes. So, I need to thank our friends, My Cleartext and Amazon for keeping us On Air and keeping us captioned and we look forward to continuing this conversation on social media.

Partial Inclusion
Challenges of Inclusion and Problem Solving
Design's Impact on Mental Health
Addressing Inequities in Health Systems
Overcrowded Healthcare and Inaccurate Data