00:00:05:22 - 00:00:37:13
Host 1- Prerna Goel (PG)
Today, we are honoured to welcome Celia Chartres-Aris, a leading disabled government special adviser and policy expert. Celia has made a global impact on disability equity and accessibility, earning multiple awards for her work. Living with Louis Dietz syndrome, a rare terminal genetic condition, she has been instrumental in policy and legislative design, collaborating with international governments and leading pioneering research.
00:00:37:15 - 00:01:08:20
PG
Celia successfully campaigned for the reinstatement of the Secretary of State for disability and the implementation of UN rights. Recognized as one of UK's most influential disabled individuals, she works with major brand governments and has founded several organisations promoting inclusion. As an investor, she supports disabled entrepreneurs and sits on numerous boards advocating for disability rights.
00:01:08:21 - 00:01:23:23
PG
Driven by a passion for policy and representation, Celia continues to push for increased elected representation of disabled people and the protection of their rights. Wow, what an impressive experience. Thank you so much, Celia, for joining us today.
00:01:24:00 - 00:01:27:07
Guest- Celia Chartres-Aris (CCA)
Thank you so much for having me. It's a real pleasure. Real pleasure.
00:01:27:12 - 00:01:49:18
Host 2- Whitney Simon (WS)
Those are some really remarkable achievements, and it is so powerful to see the impact of your work and advocating for disability rights and equity. It's clear that your contributions have been significant on so many different levels. But to start our conversation, could you share a bit more about your personal journey and how you became involved in disability advocacy and policy work?
00:01:49:20 - 00:02:05:24
CCA
Thank you. And thank you for an incredible introduction. It always feels very weird when you hear your own stuff back at you. So my background was law and I always loved politics and law. And I remember I used to get kicked out by politics lessons at school for being too argumentative, because I'd always play devil's advocate and get the class going.
00:02:06:01 - 00:02:23:17
CCA
And so I always had that kind of passion in me for being driven by politics and law and kind of global events and how that drives us forward. So I chose to specialize in law at university, and I chose to kind of specialize further in human rights, and I'm into that. When we were able to start picking on subjects.
00:02:23:19 - 00:02:52:24
CCA
I ended up in contract law, so didn't even end up where I thought I was going to. And the legal sector was so inaccessible for me, there was no understanding about doctors appointments. There was no understanding about flexible work, all of those kind of things that we take into consideration. There was no consideration of it. And I burnt out incredibly quickly, and I ended up at home in bed for a year and a half, very, very unwell because I was just pushing myself so hard to try and keep up.
00:02:53:01 - 00:03:16:16
CCA
And then when I was having the conversation with myself about, okay, what am I going to do now? Because right now I feel like there's nothing I can do because I've chosen to specialize and now I don't know what to do with it, and I don't know how to go back. And I'd already throughout my life, I've done so much kind of charity work and focusing on disability and working with disabled children in particular, because I felt like I didn't have that as a child myself.
00:03:16:18 - 00:03:39:19
CCA
And so I started working on little projects and little campaigns around human rights in relation to disability. And one of my main motivators was I went to university to study law, and I was never, ever taught about disability protections, about accessibility. So I spent a vast majority of time teaching myself, doing online courses and all that kind of stuff and speaking to barristers and doing training.
00:03:39:21 - 00:03:59:03
CCA
And I was so motivated by the fact that my experiences that I've had through my life, I don't want to see happen to other people. And that's such a cliché answer. But I always say my goal in life is to make myself redundant, that my job is not needed anymore is that I can retire in ten years because what I do isn't needed anymore.
00:03:59:03 - 00:04:14:08
CCA
But my motivation is fundamentally the world that we live in and how it operates. So people like me doesn't work. And at the end of the day, that is not equitable and that is not fair. And that is what motivates me and kind of gets me going every single morning.
00:04:14:10 - 00:04:15:16
WS
That's incredible.
00:04:15:18 - 00:04:44:14
PG
Oh, thank you for sharing your personal journey and the experiences that have shaped your work. It's evident that, your advocacy work is very deeply rooted in kind of your own personal journey and, and how your professional journey has evolved. So as you were speaking about some of the challenges that you have encountered and addressed, one of the things that keep coming up, and I think you've worked tremendously hard to combat is the thing called ableism.
00:04:44:16 - 00:05:07:22
PG
And, for our listeners, I'm not sure how many of our listeners are actually familiar with the term. So can you help explain what ableism is and how does it intersect or doesn't with, other forms of discrimination and, and how does it actually manifest itself specifically in getting access to financial products and services?
00:05:07:24 - 00:05:25:24
CCA
I think it's a brilliant question. And anytime anyone else hear about Abelism, I'm like, I could talk for hours about it as well. Keep it short and sweet. If you ask anybody on the street to define racism, sexism, sexism, homophobia, words that we all know that are part of our everyday vocabulary, people can do it on the spot quite easily.
00:05:26:01 - 00:05:48:11
CCA
You ask people to define ableism and they go, I've never heard of that word or I don't really understand it. Quite simply, ableism is the word we use to describe discrimination against disabled people, much how we use the words racism, sexism, homophobia, etc. etc. so ableism is this word that we are desperately trying to entrench into people's everyday vocabulary.
00:05:48:11 - 00:06:07:21
CCA
Something that we're teaching our children, something that we're teaching in the workplace throughout the education system. Having a word gives action power, and that's the best way I can describe it, is if we have a word to use and a word to associate, it makes people feel more empowered. But it also makes it easier to call out other people's behaviour.
00:06:07:23 - 00:06:39:00
CCA
And one of the things that I'm really passionate about and always talk about is the intersectionality of I hate the expression protected characteristics because it's such an expression. But for the purposes of this conversation, intersectionality is massive, and it is something that is so under spoken about. I'm saying this as a white woman with my privilege as being a white woman, but you take somebody else's story who might be a woman and they might not be straight, and they might not be Christian and they might not be white.
00:06:39:00 - 00:06:59:16
CCA
And they're also disabled. Those layers start adding on top of each other. So there is a massive intersectionality between peoples, elements of who they are and who makes them up. One of the things that I've always really struggled with is I am disabled before I am anything else. Nobody talks about the other elements of my identity. It's I'm disabled.
00:06:59:16 - 00:07:20:06
CCA
That's my characteristic. That's my label, and that's where I'm put. But there's other elements about me that are working against me at the same time. And again, as I say, as a white woman, I'm in a massive point of privilege. And people always say, well, how can you be privileged if you were disabled and you're a woman? Well, I think there's so many other things about me that could have been which could make my situation even more difficult.
00:07:20:06 - 00:07:43:00
CCA
And I think people don't really understand that properly. And ableism can manifest in so many different ways. Typically when you think of discrimination, you think, well, I know not to shout at people in the street and use slurs. And I know that, you know, I shouldn't hate someone based off their identity. Yes, that is macroaggressions, forms of racism, homophobia, sexism, ableism.
00:07:43:02 - 00:08:05:19
CCA
But there are microaggressions. There are unconscious biases. There are subconscious biases that indirect discrimination, things that in every element of our life we are all doing. And sometimes we don't even realize we're doing it. So ableism captures that bracket of, well, my intention was good. Your intention may have been good, but we still have to call out the behavior, which is incorrect.
00:08:05:19 - 00:08:26:20
CCA
Intention isn't an excuse for doing something wrong. And so when we look at evil ism, we're looking at these multiple layers of behavior that people, I suppose, display. So macroaggressions of shouting at people in the streets. But it's also I probably won't hire that person because they have dyslexia, so they're probably not going to be able to keep up with my other employees.
00:08:27:01 - 00:08:46:16
CCA
Not true. I'm not going to hire this person with ADHD because they're going to be quite distracted, and they probably won't work well in the team or job with the team. Not true. I'm not going to hire this disabled person who's a wheelchair user, because I'm going to have to make loads of changes to the office physically. And, from a technical perspective, it's going to cost me loads of money, so I'm not going to hire that person.
00:08:46:20 - 00:09:10:06
CCA
Those are examples of ableism and their thoughts that we've all probably had at some point in our life. And that's okay, as long as we can identify it and then rework those thoughts, because those thoughts are entrenched within us and they're entrenched within our society, just like stereotypes we have about women, about us being really overly emotional. And if you're, a woman that's very assertive, you automatically very bossy.
00:09:10:08 - 00:09:33:04
CCA
All of those kind of mentalities that we have are ingrained within us. And it's about right. How do we unlearn these thought processes that we have? One of the biggest kind of ableism stereotypes that we come across all the time is you ask people to close their eyes and picture somebody that's disabled instantly. Everyone will have a very clear mental picture in their mind of what that person looks like.
00:09:33:06 - 00:09:59:08
CCA
And actually, only 8% of disabled people are wheelchair users, yet we all automatically go to wheelchair. And that's an example of ableism, as it's that automatic discrimination that we're doing, either consciously or unconsciously, purely because there is such a lack of education in our society. Another statistic that I gave is that 98% of websites, all websites are deemed to fail.
00:09:59:13 - 00:10:22:21
CCA
Accessibility fail. That is an active example of abelism. It is active discrimination. But nobody is talking about it. And especially in the fintech space, this is a massive problem, which is why I project nemo is so brilliant is we're aiming to tackle that discrimination that's happening that people aren't even aware of. Unless you are the disabled consumer that is trying to access these things.
00:10:22:23 - 00:10:51:07
WS
Celia I mean, Snap's catching on so many important things. Intersectionality. I think that is something that we talk a lot about. A lot people like to put kind of these ableism, sexism, racism in these like boxes and nine times out of ten, people don't just fit in one box, we fit in multiple boxes. And how can sure, inclusion is making sure that we can address and create spaces for people in all their different facets.
00:10:51:09 - 00:11:14:04
WS
So I think that's I mean, incredibly powerful. And the examples that you use for ableism were also really powerful because I think you're right. If I, before I joined Project Nemo, if you asked me that question, I closed my eyes. Right. A wheelchair user would be the first thing that I think about, and it's really taking the time to take a step back and think about the microaggressions as well as the macro aggressions.
00:11:14:04 - 00:11:52:01
WS
And so I think, I mean, just incredibly insightful. And you also touched on something else about that ableism bit. And the people that we think about when we think about disability, specifically as it applies to kind of financial products and services. One question that I have is when we're thinking about creating those services, financial services, access to those products and making sure that they're genuine, how can we do that in a way that isn't tokenistic, like, because to your point, you know, we have some everyone has biases and kind of the experiences that have shaped how they view the world.
00:11:52:03 - 00:12:13:24
WS
That is just a given. But when we're trying to be more inclusive, how can we do it in a way that doesn't put one person out there and considers it? Okay, that's done. We've tackled disability, but doing it, doing it in a way that is understanding that sensitive and also allows for people to come in all their different shapes, forms, you know, outside of just one facet of their, their identity.
00:12:14:01 - 00:12:33:01
CCA
And that is a brilliant question, is something I get asked all the time is like, how do we do it properly? How do we actually make sure that we're breaking down those barriers? It's a quite simple answer, really. Once you know it, it's there in your brain. You're like, okay, no, this makes so much sense. Disabled people are the largest minority group in the world.
00:12:33:03 - 00:13:02:02
CCA
We're also the most diverse minority group in the entire world. I tell you that I'm disabled. That doesn't actually tell you anything about me. You don't know is my disability relates to my hearing, to my sight, to neurodivergent. Is it a physical disability? It doesn't actually say anything. If you've spoken to one disabled person, you have spoken to one disabled experience, and you've heard one disabled experience bringing it back to intersectionality as well.
00:13:02:04 - 00:13:21:22
CCA
Whether you have a physical disability, neuro divergence, whether you have a chronic health condition, all of our experiences are so complex and so diverse, and what works for one disabled person probably isn't going to work. So the next disabled person that comes along, so we see time and time again, well, you know, we've put out text in our marketing materials now.
00:13:21:22 - 00:13:42:10
CCA
So we're definitely inclusive okay. But are you dyslexia friendly. Are you ADHD friendly. Can someone navigate in a, without their mouse? Can someone use a screen reader? The way to do proper inclusion. And this doesn't just go for disability. This goes for every section of inclusion is if you've spoken to one person, you've spoken to one person.
00:13:42:15 - 00:14:18:20
CCA
You have to get together a diverse group of people to tell you their lived experience. The best people to tell you what they need are those people themselves. Don't make presumptions about what you think you need. You know, just because you've read the Gaad, which is the Global Accessibility Advice Bureau, that doesn't mean you understand accessibility. You need to speak directly to the people with lived experience, and making sure when you're having those conversations, you're having it with an incredibly diverse group that covers intersectionality and covers every single area of disability.
00:14:19:01 - 00:14:45:21
CCA
I mean, I've been to disability consultations and every single person in that room, and that's the only group meeting that they're holding has a chronic illness. Fantastic. Brilliant. We've got together a diverse group of people who have chronic illnesses, but as a group, we do not represent disability as a whole. And I think that's what's so important is that's how you avoid tokenism is those small changes are fantastic, they're amazing, they're great, and they produces immediate results.
00:14:45:23 - 00:15:03:12
CCA
But you also then have to take a step back and say what is entrenched within us when we look at our policies, when we look at our recruitment processes, when we look at our hiring processes, when we look at our app, is it truly accessible for anybody who wants to come and use our services and access our products?
00:15:03:14 - 00:15:25:20
CCA
There will always be incidences where some people cannot because it is impossible to design accessibility for absolutely everybody because everybody is individual. But the point is, is have you then got the channels where somebody can communicate in a different way if necessary? There's all of these questions that have to be put in place, and people won't think about these things unless they ask disabled people.
00:15:25:22 - 00:15:48:08
CCA
There's a brilliant expression of nothing about us without us, and that goes for every element of identities. Cannot have the conversation about us if we aren't in the room with you, because then you're taking that kind of power of conversation away again. So even the intention is to tear down barriers. But having that conversation with none of us in the room, you're actually creating now another barrier of entry.
00:15:48:08 - 00:16:00:21
CCA
And I think that's how you do inclusion properly is the very people you're talking about are in the room having those conversations with you, and they are leading the conversation, not being told what to do or how to behave.
00:16:00:23 - 00:16:24:20
PG
I love that phrase that you used. Right. And I think we've seen this across all different forms of, discrimination, gender ism, racism, ableism, all of them are being solved by people who have never experienced them. And that's why we are not getting it right. You touched upon a very interesting point there, and I think that's probably what makes it one of the hardest ones to tackle.
00:16:24:20 - 00:16:52:20
PG
It's such a diverse, form of, inclusion that we have to solve for. So what are the practical ways that fintechs can actually adopt, because they have to find the right balance between designing products and services that work for everybody, with the fact that they are commercial organizations, there is a perception there's a huge cost associated with implementing it so that it works for everybody.
00:16:52:20 - 00:17:09:05
PG
So are there things that you have seen work, maybe in other industries or other areas which can remove this fear that, oh my God, it's so diverse. I have to do it for so many people. It's going to be expensive, where actually there are some fundamental things which can get you 80% of the way there.
00:17:09:09 - 00:17:34:01
CCA
Absolutely. So I'll say two things on this. The first being if you are a company providing service and you have customers and consumers, and financial gain is your ultimate driver, when people use the argument and say, well, you know, it's going to cost a lot, I'm going to have to make these changes, okay. But failing to make those changes, you are shutting out potentially 25% of your potential consumer basis.
00:17:34:03 - 00:17:57:18
CCA
So even though there's a cost in the immediate, there is also a financial implication that you are potentially losing because you aren't catering towards disabled people and you aren't accessible any, any organization, especially large organizations that have those financial drivers, will look at the statistics about the potentials that they're losing because they're not focusing on disabled consumers. And go, why do we not do it?
00:17:57:19 - 00:18:15:06
CCA
Why have we not been doing this before? It doesn't make any sense. We're losing so many consumers. Disabled consumers are also very proven to be very loyal consumers, because when we find something that works for us, we tend to stick at it because of the other barriers and the other challenges of moving time, specifically in the fintech space as well.
00:18:15:06 - 00:18:47:16
CCA
Financial decisions can be very overstated, emulating and they can be very complex. So you're going to create 25% more loyal customers. So that's the kind of financial aspect of it. But there's also the kind of ethical and the moral aspect of it. I'll use this kind of phrase as an example. If an organization identified that they had inherent racism within their organization, would they ever dare in 2024 to sit there and say, well, it's going to cost too much money to eradicate racism
00:18:47:16 - 00:19:06:18
CCA
In out firm, so I don't think we're actually going to do it. They would never they would deal with it and they would tackle that head on. So why do we not have the same attitudes towards ableism as we do other forms of discrimination? Are we anywhere near where we need to be in terms of eradicating other forms of discrimination, absolutely not?
00:19:06:22 - 00:19:32:05
CCA
We still have so much further to go. The ableism has to be up there in the conversation, and currently it's not. And that's what's quite scary. As a disabled person. And I would say kind of, what do we do? How do we move forward in answer to that element as a question, there's a brilliant phrase which is from the point of design, get it right from the outset, and then you don't have to go back and correct yourselves.
00:19:32:07 - 00:19:53:18
CCA
And, you know, every time you're doing an app update, just shove in accessibility measures, shove in, you know, alt-text shove in there, shove in that, shove in that. There is so many quick changes that can make real systemic change that people are just overlooking them and not considering that if you adopt the mentality from the point of design, you're going to save yourself a lot of hassle in the future.
00:19:53:18 - 00:20:14:17
CCA
I can tell you that. And we've seen some brilliant organizations who have either corrected themselves or actually reestablished themselves as more accessible firms. But I always use that analogy and say, switch out that word ableism and change it for another ism that we have, such as gender ism or racism or sexism, homophobia. And people will feel very differently about what you're going to say.
00:20:14:23 - 00:20:27:06
CCA
And that would be my advice. Would you say this if there was a different word inserted in there instead of ableism? 99% of the time people go, oh no, I wouldn’t. And so then sit and question yourself as to why you think it's okay to do to disabled people.
00:20:27:08 - 00:20:51:01
PG
I don't know why ableism is not a word that everybody is banging on about at this point in time, right? And I think that's the key. If project nemo can achieve one thing. And and that is to get ableism in the vocabulary of people out there, I think we've achieved our purpose. Right. I think it's a great mindset change of just replacing genderism, raceism and racism and all of that with ableism.
00:20:51:01 - 00:20:57:14
PG
And suddenly I actually it's a no brainer at that point in time. Right? So I love that response. So thank you for sharing that.
00:20:57:16 - 00:21:33:05
WS
Turning to a broader perspective, what role does legislation play in ensuring disability inclusion? You talked about using that really simple, strategy of thinking about, okay, if I replace racism, sexism with ableism, then it is a no brainer because most organizations aren't just going to turn an eye to sexism. So are there any recent changes or gaps in current disability laws that you think need addressing to support that kind of mind shift on the on behalf of individuals and businesses?
00:21:33:07 - 00:21:55:01
CCA
There are massive problems in the legislation, and this is exactly why I do what I do, because I fundamentally believe that if you legislative protection is one of the keys to progression and implementing sustained progression as well, that it does, it's not about who the current leader is or the current campaigns that are happening or, you know, current MPs have a real passion for disability and are talking about it a lot.
00:21:55:03 - 00:22:15:09
CCA
It creates systemic change for the future, and it sets a precedent. And that's what we need is currently there is not enough precedent and behavior is not being ruled out. If you said to a disabled person who can't access their banking app, you know, is this discrimination, they would just 99% at the time if they're not kind of in the disability campaigning.
00:22:15:09 - 00:22:35:04
CCA
Well, that just go, no, this is just how my life is. Rather than actually recognizing that that is a form of discrimination and they have rights as a consumer to be able to access what they need to access from their banking. One of the biggest problems we have, particularly in British standards, is that everything is optional. It's extra guidance.
00:22:35:04 - 00:22:59:01
CCA
You know, even the accessibility standards are guidance. They are not legislative protections. There is not enough written in our legislation about protections for disabled people. We have a fantastic basis in the Equality Act, but the Equality Act is now 14 years old, and there is not a whisper of it going to be updated in terms of disability any time soon.
00:22:59:03 - 00:23:28:05
CCA
One of the things that people will learn that, you know, I know because I work in the policy space, but nobody in the media is talking about as a country, the United Kingdom is currently under investigation from the United Nations around our treatment of disabled people. Most people do not know that because nobody is talking about it. The reason we are under investigation is because we are failing to properly protect disabled people and establish and provide what is needed within society.
00:23:28:07 - 00:23:47:05
CCA
That is shocking that as a country, we are under investigation from the United Nations because we are failing to adopt the United Nations Convention on the Rights of Persons with disability. We're failing. And that's shocking. As a person that now lives in that system, that is campaigning as hard as I can to make sure these legislative changes come in.
00:23:47:07 - 00:24:11:11
CCA
But it's very difficult. It's very difficult because ableism is not treated with the same regard that it should be. And in terms of kind of social movement, we have been campaigning for hundreds and hundreds of years. But in terms of the size of our campaign, we're actually relatively in our infancy compared to other elements of identity. You look at the female rights movement, we're relatively in our infancy compared.
00:24:11:13 - 00:24:36:08
CCA
And I think what's scary is there is not enough people that are we have some fantastic disabled members of Parliament and we have some fantastic allies and supporters. But there is not enough conversation around disability and politics. And one of the reasons for that is less than 2% of our MPs identify as the disabled. So the very people making our laws do not accurately represent the nearly quarter of the population that identifies as disabled.
00:24:36:08 - 00:25:00:13
CCA
Again, let's bring it back to that analogy. You know that the female representation we are getting closer and closer and closer to it being an equal split, which is fantastic. If 25% of the population were women and we only had 2% of our MPs as women, there would be outcry, there would be uproar like there has been historically, where we are campaigning so hard to see that shift, to create that equal split.
00:25:00:15 - 00:25:23:11
CCA
Again. Why is no one talking about the fact that the very people making the laws about disabled people aren't disabled themselves? There is not that accurate representation of voice. And when that happens, when you don't have proper consultation, when you aren't doing correctly, the very things that are brought in, then don't work properly because the disabled voice hasn't been listened to and the experience hasn't been heard.
00:25:23:13 - 00:25:41:05
CCA
But that is in no way to take away from the fact that we have seen incredible progression over the last couple of years. So you had Doctor Liam Fox with the Down's Syndrome Bill, and we've had British Sign Language now being recognized as an official language. There has been progression in the last couple of years. Are we moving quickly enough?
00:25:41:07 - 00:26:03:06
CCA
Absolutely not. Technology and AI is evolving, and we need that legislative protection to keep up with that ever changing world, when currently we're operating with rights that were designed 14 years ago, and the world now is not the same place that it was 14 years ago. We have to be better at keeping up with the developments that we have in society.
00:26:03:11 - 00:26:29:10
PG
Brings me to this concept of advocacy and campaigning. What you are saying is we need to make changes in our legislation, but for that to happen, we need to have the right representation, which is reflective of the society and the community we live in. But also we need to be able to push the agenda and bring it to the forefront like it has been done for racism or women's rights or many other forms of discrimination.
00:26:29:10 - 00:26:54:02
PG
So how can we create the right types of campaigns? What works, and how do we get it to the same level of prominence and support that has, finally gotten us ever so closely to our, objectives on women's rights and all of that? It's interesting. I mean, if I look at this panel, it's an intersectionality at its best, right?
00:26:54:02 - 00:27:08:09
PG
So we are actually probably representing a group that is fighting for a lot of different causes. But what works, what can people do to really support and push, the campaigns, and create more advocacy on this topic?
00:27:08:11 - 00:27:23:24
CCA
I think, I mean, it's a brilliant question, and it's almost like asking what's the key to the universe, because some things work and some things don't. And I'm so happy to see that project nemo is doing so incredibly well. And having had those initial conversations right back at the beginning, it's been so incredible to kind of watch that journey.
00:27:23:24 - 00:27:43:08
CCA
And I think why things work is people feel like they can relate. One of the biggest misconceptions, and one of the things that as a disabled community, we struggle with so much is that people shoehorn disabled people into conversations about social care and about health care, and that is it. You know, that's where our conversation is. That's where we lie.
00:27:43:11 - 00:27:58:21
CCA
Those are the things that we think about most, not as our doctors and our carers and our nurses. True. I do think about that a hell of a lot. I think about that all the time. It's one of the biggest conversations that I have with myself on a daily basis, and I have to be conscious and aware of.
00:27:58:23 - 00:28:18:05
CCA
But I also have a life. I have a life outside of that, whatever that life looks like for an individual. Our lives are not just about health care and social care. And I think that's one of the biggest misconceptions, is that people don't understand the fact that this conversation around discrimination, disabled people is about every single aspect of our lives.
00:28:18:07 - 00:28:51:19
CCA
I want to thrive, not just survive. And currently we've built this kind of routine. And this section, which, yes, the health care is there, you know, does it have its flaws? Absolutely. But am I so grateful for the NHS? Absolutely. You know, there is the care system. Is it good? No. But is it that. Yes. We've been so focused on this mentality of people just surviving that there has been this forgetting this of the fact that people also want to thrive and have a life and use their own money and earn their own money and have fun and participate and have friends and go out.
00:28:51:21 - 00:29:14:16
CCA
And that is what makes it successful. That is the key to advocacy is finding out what people actually want, because people haven't asked us before. We've been so forgotten in the timeline the kind of campaigning and advocacy people have forgotten to ask us what we want. You know, you asked disabled people, what is it that you feel like could be done better?
00:29:14:18 - 00:29:34:12
CCA
You know, one of the responses is going to be, we want to be able to earn my money and then go and spend my money on whatever I want to spend my money on, just like everybody else does. And that is the key to success, is actually listening to people and realizing shock, horror that us disabled people want to be able to live and contribute in society as well.
00:29:34:14 - 00:29:58:02
CCA
But people that don't know about the kind of medical and social model of disability. I can't not do things because I'm disabled. I can't not do things because you will not allow me to do them. It's not me, it's you. And I always kind of recognize that campaigns will never work in terms of disability, and the intention will be utterly wrong, and disabled people will not get behind it.
00:29:58:04 - 00:30:17:19
CCA
If you're focusing on the fact that the problem is the disabled person, we're not the problem. Society is the problem. The number of disabled people has hit in the UK, a quarter of the population, it's 17% of the world. That figure is going to grow and it's going to grow quickly. We are an aging population. We are a growing population.
00:30:17:24 - 00:30:45:09
CCA
There are environmental factors at play as we live in an ever more polluted world. That number is going to grow. So deal with it now before it becomes even a bigger problem than it is now. And as a disabled person who's lived through this kind of story of whatever this is, for it to get worse is unimaginable. And that's, you know, this is exactly why organizations and projects that project nemo are here is to put a stop to that and an instant stop to that.
00:30:45:09 - 00:31:08:11
CCA
People need to tackle things head on with the severity that it deserves. It's not just about, you know, doing training or doing speech. How do we create systemic change? How do we change people's mindsets? Yes, we can change one person's mindset. How do we start that kind of as a sustained change. And that's what's really important, is changing mindset as well around disability.
00:31:08:13 - 00:31:29:13
CCA
We're not something to be said. We want to enjoy our lives. We are just like everybody else. This concept of normality is just absolute crap. There is no normality and we all need to start understanding that a little bit more. That is the expression, isn't it, of the fact that round peg, round hole or disabled people are square peg trying to get into a round hole?
00:31:29:18 - 00:31:45:22
CCA
There shouldn't be a hole in the first place. Society should just work for everybody. And so there's that kind of shift around mindset. So trying to put us into it, change the environment around us. And I think that's how that's the key to success. That would be my advice.
00:31:45:24 - 00:32:07:14
WS
The statement that is really resonating with me that you said is we want to thrive, not just survive. And it is so powerful because I do think as a society, a lot of us with any type of marginalized background, we are just surviving. And for a long time we thought that was enough, but it's absolutely not. So thank you so much.
00:32:07:14 - 00:32:24:13
WS
Just thank you for joining us, Celia. I feel as though I have learned so much, and I feel so galvanized in terms of the work that we are doing with Project Nemo to get us to a place where it's like, let's do away with all the holes. Like, let's just create a society where everyone can thrive.
00:32:24:15 - 00:32:47:05
CCA
Like I hear time and time again, people saying thank you when they give an accessibility you measures, it works and people send emails and I do it to where I'm like, even when we reschedule this call, I'm so sorry. I was at home to thank you so much. That is just prime example of how far we have to go, is the fact that people that receive reasonable adjustments, and why is it even called a reasonable adjustment?
00:32:47:05 - 00:33:07:01
CCA
Tell me what would be unreasonable? If somebody needs something to do their job, they need something to do their job. I hope that one day we reach a point in society where people aren't saying thank you for receiving their basic human rights, because accessibility is a human right. It's not privilege. And right now, very much kind of outside the disabled community, it's seen as a favor.
00:33:07:01 - 00:33:31:08
CCA
It's seen as a level up. It's seen as an advantage. While this person gets to work from home, that's not fair. Or they get a specific computer and it's better than mine. Accessibility isn't is a human rights or privilege, and we need to stop labeling it as such. And when we think about when we strip it back down to all people receiving the human rights that they deserve, if your answer is no, you have a systemic problem.
00:33:31:13 - 00:33:52:04
CCA
And that needs to be addressed just as you address any other form of systemic problem. We have systemic problems absolutely everywhere in our society, across all sections of discrimination, and we have to find a way to join that conversation together, that we're not just looking at sexism, we're not just looking at racism. We're looking at everybody together and going, where are the problems?
00:33:52:08 - 00:34:12:17
CCA
Because so many of these issues affect one single person, and that person is so left out of the conversation, and that is incredibly harmful. If we strip it back down to is somebody receiving their basic human right? If your answer isn't yes, you've got a problem. And there should never be a conversation of, well, how much is this going to cost to fix?
00:34:12:17 - 00:34:18:16
CCA
Or, you know, what do we need? No, it I'm sorry. No, that would be my answer to that.
00:34:18:17 - 00:34:44:16
WS
I mean, hell yeah. This has just been an incredible conversation, and I would love to spend the whole day just talking about how we can get this system right. But we are coming to the end of our time together. So before we sign off, we just have one final question. When we ask all our guests, if fintechs could do one thing differently to make themselves more disability inclusive, what should that be?
00:34:44:18 - 00:35:13:23
CCA
Think about all disabilities. Don't just think about one particular disability, or 1 or 2 or three. You need to think about disability as an entire conversation. Prime example shutting down branches in person. For someone like me who requires to speak face to face and all of the time, that is incredibly damaging. If you are not providing a backup of you know, welcome, press two for this or there are so many types of disabilities and you have to include them all.
00:35:13:23 - 00:35:34:14
CCA
And you also have to think about intersectionality within the disability umbrella as well. Very rarely does a person have one disability. Most of the time we have multiple things that we're trying to balance and juggle going on at the same time. So if yes, I can now access it using mouse navigation. But now I can't do x, Y, and Z.
00:35:34:14 - 00:35:54:13
CCA
What's the point? It makes everything that has been done up to that point redundant. We have to make sure we're thinking about all of disability at whatever chosen, why people choose to identify with. But that would be my biggest piece of advice is what works for one person might not work for another, so making sure that you're doing as much as possible for everybody.
00:35:54:15 - 00:36:14:04
CCA
Also, I recommend all adults as well. I'm sorry, the bet I'm not going to clap. I think this is quite a controversial thing to say. I'm not going to clap you for making one change. I'll clap for you when you finish the journey. And quite often people want praise for making small changes like alt text or, you know, actually using captions on their videos.
00:36:14:06 - 00:36:33:22
CCA
I'm not going to clap you for that, because that's not an achievement. That's achieving basic human rights of someone being able to access your material the same as everybody else. I'll clap you when the journey has finished and I think that's what people need to realize is that this is an this is a never ending process. There will never be an end point because AI technology is developing so fast.
00:36:33:24 - 00:36:44:09
CCA
So you have to keep up with that and you have to put in place a sustained program of change which follows your company. Just like how other programs of policy you have do.
00:36:44:11 - 00:37:11:13
PG
Nice one. Thank you so much, Celia. I'm so energized and actually feel even more validated that what we are trying to do in Project Nemo is the right thing. And, ableism needs to be in the vocabulary of every person out there. It almost. I feel like it needs to be taught in school. It needs to be talked about in every possible, opportunity that we get.
00:37:11:13 - 00:37:21:12
PG
So that's loud and clear. Thank you again. The work you're doing is important. It's needed. And, and thank you again for taking the time and coming on our podcast.
00:37:21:18 - 00:37:22:11
CCA
Thank you so much.
00:37:22:17 - 00:37:36:10
PG
And to all our listeners, thank you for listening in, to our second episode of Accessible Finance by Project Nemo. Stay tuned as we bring to you more interesting deep dives into topics related to disability inclusion. Thank you.
Host 1- Prerna Goel (PG)
Today, we are honoured to welcome Celia Chartres-Aris, a leading disabled government special adviser and policy expert. Celia has made a global impact on disability equity and accessibility, earning multiple awards for her work. Living with Louis Dietz syndrome, a rare terminal genetic condition, she has been instrumental in policy and legislative design, collaborating with international governments and leading pioneering research.
00:00:37:15 - 00:01:08:20
PG
Celia successfully campaigned for the reinstatement of the Secretary of State for disability and the implementation of UN rights. Recognized as one of UK's most influential disabled individuals, she works with major brand governments and has founded several organisations promoting inclusion. As an investor, she supports disabled entrepreneurs and sits on numerous boards advocating for disability rights.
00:01:08:21 - 00:01:23:23
PG
Driven by a passion for policy and representation, Celia continues to push for increased elected representation of disabled people and the protection of their rights. Wow, what an impressive experience. Thank you so much, Celia, for joining us today.
00:01:24:00 - 00:01:27:07
Guest- Celia Chartres-Aris (CCA)
Thank you so much for having me. It's a real pleasure. Real pleasure.
00:01:27:12 - 00:01:49:18
Host 2- Whitney Simon (WS)
Those are some really remarkable achievements, and it is so powerful to see the impact of your work and advocating for disability rights and equity. It's clear that your contributions have been significant on so many different levels. But to start our conversation, could you share a bit more about your personal journey and how you became involved in disability advocacy and policy work?
00:01:49:20 - 00:02:05:24
CCA
Thank you. And thank you for an incredible introduction. It always feels very weird when you hear your own stuff back at you. So my background was law and I always loved politics and law. And I remember I used to get kicked out by politics lessons at school for being too argumentative, because I'd always play devil's advocate and get the class going.
00:02:06:01 - 00:02:23:17
CCA
And so I always had that kind of passion in me for being driven by politics and law and kind of global events and how that drives us forward. So I chose to specialize in law at university, and I chose to kind of specialize further in human rights, and I'm into that. When we were able to start picking on subjects.
00:02:23:19 - 00:02:52:24
CCA
I ended up in contract law, so didn't even end up where I thought I was going to. And the legal sector was so inaccessible for me, there was no understanding about doctors appointments. There was no understanding about flexible work, all of those kind of things that we take into consideration. There was no consideration of it. And I burnt out incredibly quickly, and I ended up at home in bed for a year and a half, very, very unwell because I was just pushing myself so hard to try and keep up.
00:02:53:01 - 00:03:16:16
CCA
And then when I was having the conversation with myself about, okay, what am I going to do now? Because right now I feel like there's nothing I can do because I've chosen to specialize and now I don't know what to do with it, and I don't know how to go back. And I'd already throughout my life, I've done so much kind of charity work and focusing on disability and working with disabled children in particular, because I felt like I didn't have that as a child myself.
00:03:16:18 - 00:03:39:19
CCA
And so I started working on little projects and little campaigns around human rights in relation to disability. And one of my main motivators was I went to university to study law, and I was never, ever taught about disability protections, about accessibility. So I spent a vast majority of time teaching myself, doing online courses and all that kind of stuff and speaking to barristers and doing training.
00:03:39:21 - 00:03:59:03
CCA
And I was so motivated by the fact that my experiences that I've had through my life, I don't want to see happen to other people. And that's such a cliché answer. But I always say my goal in life is to make myself redundant, that my job is not needed anymore is that I can retire in ten years because what I do isn't needed anymore.
00:03:59:03 - 00:04:14:08
CCA
But my motivation is fundamentally the world that we live in and how it operates. So people like me doesn't work. And at the end of the day, that is not equitable and that is not fair. And that is what motivates me and kind of gets me going every single morning.
00:04:14:10 - 00:04:15:16
WS
That's incredible.
00:04:15:18 - 00:04:44:14
PG
Oh, thank you for sharing your personal journey and the experiences that have shaped your work. It's evident that, your advocacy work is very deeply rooted in kind of your own personal journey and, and how your professional journey has evolved. So as you were speaking about some of the challenges that you have encountered and addressed, one of the things that keep coming up, and I think you've worked tremendously hard to combat is the thing called ableism.
00:04:44:16 - 00:05:07:22
PG
And, for our listeners, I'm not sure how many of our listeners are actually familiar with the term. So can you help explain what ableism is and how does it intersect or doesn't with, other forms of discrimination and, and how does it actually manifest itself specifically in getting access to financial products and services?
00:05:07:24 - 00:05:25:24
CCA
I think it's a brilliant question. And anytime anyone else hear about Abelism, I'm like, I could talk for hours about it as well. Keep it short and sweet. If you ask anybody on the street to define racism, sexism, sexism, homophobia, words that we all know that are part of our everyday vocabulary, people can do it on the spot quite easily.
00:05:26:01 - 00:05:48:11
CCA
You ask people to define ableism and they go, I've never heard of that word or I don't really understand it. Quite simply, ableism is the word we use to describe discrimination against disabled people, much how we use the words racism, sexism, homophobia, etc. etc. so ableism is this word that we are desperately trying to entrench into people's everyday vocabulary.
00:05:48:11 - 00:06:07:21
CCA
Something that we're teaching our children, something that we're teaching in the workplace throughout the education system. Having a word gives action power, and that's the best way I can describe it, is if we have a word to use and a word to associate, it makes people feel more empowered. But it also makes it easier to call out other people's behaviour.
00:06:07:23 - 00:06:39:00
CCA
And one of the things that I'm really passionate about and always talk about is the intersectionality of I hate the expression protected characteristics because it's such an expression. But for the purposes of this conversation, intersectionality is massive, and it is something that is so under spoken about. I'm saying this as a white woman with my privilege as being a white woman, but you take somebody else's story who might be a woman and they might not be straight, and they might not be Christian and they might not be white.
00:06:39:00 - 00:06:59:16
CCA
And they're also disabled. Those layers start adding on top of each other. So there is a massive intersectionality between peoples, elements of who they are and who makes them up. One of the things that I've always really struggled with is I am disabled before I am anything else. Nobody talks about the other elements of my identity. It's I'm disabled.
00:06:59:16 - 00:07:20:06
CCA
That's my characteristic. That's my label, and that's where I'm put. But there's other elements about me that are working against me at the same time. And again, as I say, as a white woman, I'm in a massive point of privilege. And people always say, well, how can you be privileged if you were disabled and you're a woman? Well, I think there's so many other things about me that could have been which could make my situation even more difficult.
00:07:20:06 - 00:07:43:00
CCA
And I think people don't really understand that properly. And ableism can manifest in so many different ways. Typically when you think of discrimination, you think, well, I know not to shout at people in the street and use slurs. And I know that, you know, I shouldn't hate someone based off their identity. Yes, that is macroaggressions, forms of racism, homophobia, sexism, ableism.
00:07:43:02 - 00:08:05:19
CCA
But there are microaggressions. There are unconscious biases. There are subconscious biases that indirect discrimination, things that in every element of our life we are all doing. And sometimes we don't even realize we're doing it. So ableism captures that bracket of, well, my intention was good. Your intention may have been good, but we still have to call out the behavior, which is incorrect.
00:08:05:19 - 00:08:26:20
CCA
Intention isn't an excuse for doing something wrong. And so when we look at evil ism, we're looking at these multiple layers of behavior that people, I suppose, display. So macroaggressions of shouting at people in the streets. But it's also I probably won't hire that person because they have dyslexia, so they're probably not going to be able to keep up with my other employees.
00:08:27:01 - 00:08:46:16
CCA
Not true. I'm not going to hire this person with ADHD because they're going to be quite distracted, and they probably won't work well in the team or job with the team. Not true. I'm not going to hire this disabled person who's a wheelchair user, because I'm going to have to make loads of changes to the office physically. And, from a technical perspective, it's going to cost me loads of money, so I'm not going to hire that person.
00:08:46:20 - 00:09:10:06
CCA
Those are examples of ableism and their thoughts that we've all probably had at some point in our life. And that's okay, as long as we can identify it and then rework those thoughts, because those thoughts are entrenched within us and they're entrenched within our society, just like stereotypes we have about women, about us being really overly emotional. And if you're, a woman that's very assertive, you automatically very bossy.
00:09:10:08 - 00:09:33:04
CCA
All of those kind of mentalities that we have are ingrained within us. And it's about right. How do we unlearn these thought processes that we have? One of the biggest kind of ableism stereotypes that we come across all the time is you ask people to close their eyes and picture somebody that's disabled instantly. Everyone will have a very clear mental picture in their mind of what that person looks like.
00:09:33:06 - 00:09:59:08
CCA
And actually, only 8% of disabled people are wheelchair users, yet we all automatically go to wheelchair. And that's an example of ableism, as it's that automatic discrimination that we're doing, either consciously or unconsciously, purely because there is such a lack of education in our society. Another statistic that I gave is that 98% of websites, all websites are deemed to fail.
00:09:59:13 - 00:10:22:21
CCA
Accessibility fail. That is an active example of abelism. It is active discrimination. But nobody is talking about it. And especially in the fintech space, this is a massive problem, which is why I project nemo is so brilliant is we're aiming to tackle that discrimination that's happening that people aren't even aware of. Unless you are the disabled consumer that is trying to access these things.
00:10:22:23 - 00:10:51:07
WS
Celia I mean, Snap's catching on so many important things. Intersectionality. I think that is something that we talk a lot about. A lot people like to put kind of these ableism, sexism, racism in these like boxes and nine times out of ten, people don't just fit in one box, we fit in multiple boxes. And how can sure, inclusion is making sure that we can address and create spaces for people in all their different facets.
00:10:51:09 - 00:11:14:04
WS
So I think that's I mean, incredibly powerful. And the examples that you use for ableism were also really powerful because I think you're right. If I, before I joined Project Nemo, if you asked me that question, I closed my eyes. Right. A wheelchair user would be the first thing that I think about, and it's really taking the time to take a step back and think about the microaggressions as well as the macro aggressions.
00:11:14:04 - 00:11:52:01
WS
And so I think, I mean, just incredibly insightful. And you also touched on something else about that ableism bit. And the people that we think about when we think about disability, specifically as it applies to kind of financial products and services. One question that I have is when we're thinking about creating those services, financial services, access to those products and making sure that they're genuine, how can we do that in a way that isn't tokenistic, like, because to your point, you know, we have some everyone has biases and kind of the experiences that have shaped how they view the world.
00:11:52:03 - 00:12:13:24
WS
That is just a given. But when we're trying to be more inclusive, how can we do it in a way that doesn't put one person out there and considers it? Okay, that's done. We've tackled disability, but doing it, doing it in a way that is understanding that sensitive and also allows for people to come in all their different shapes, forms, you know, outside of just one facet of their, their identity.
00:12:14:01 - 00:12:33:01
CCA
And that is a brilliant question, is something I get asked all the time is like, how do we do it properly? How do we actually make sure that we're breaking down those barriers? It's a quite simple answer, really. Once you know it, it's there in your brain. You're like, okay, no, this makes so much sense. Disabled people are the largest minority group in the world.
00:12:33:03 - 00:13:02:02
CCA
We're also the most diverse minority group in the entire world. I tell you that I'm disabled. That doesn't actually tell you anything about me. You don't know is my disability relates to my hearing, to my sight, to neurodivergent. Is it a physical disability? It doesn't actually say anything. If you've spoken to one disabled person, you have spoken to one disabled experience, and you've heard one disabled experience bringing it back to intersectionality as well.
00:13:02:04 - 00:13:21:22
CCA
Whether you have a physical disability, neuro divergence, whether you have a chronic health condition, all of our experiences are so complex and so diverse, and what works for one disabled person probably isn't going to work. So the next disabled person that comes along, so we see time and time again, well, you know, we've put out text in our marketing materials now.
00:13:21:22 - 00:13:42:10
CCA
So we're definitely inclusive okay. But are you dyslexia friendly. Are you ADHD friendly. Can someone navigate in a, without their mouse? Can someone use a screen reader? The way to do proper inclusion. And this doesn't just go for disability. This goes for every section of inclusion is if you've spoken to one person, you've spoken to one person.
00:13:42:15 - 00:14:18:20
CCA
You have to get together a diverse group of people to tell you their lived experience. The best people to tell you what they need are those people themselves. Don't make presumptions about what you think you need. You know, just because you've read the Gaad, which is the Global Accessibility Advice Bureau, that doesn't mean you understand accessibility. You need to speak directly to the people with lived experience, and making sure when you're having those conversations, you're having it with an incredibly diverse group that covers intersectionality and covers every single area of disability.
00:14:19:01 - 00:14:45:21
CCA
I mean, I've been to disability consultations and every single person in that room, and that's the only group meeting that they're holding has a chronic illness. Fantastic. Brilliant. We've got together a diverse group of people who have chronic illnesses, but as a group, we do not represent disability as a whole. And I think that's what's so important is that's how you avoid tokenism is those small changes are fantastic, they're amazing, they're great, and they produces immediate results.
00:14:45:23 - 00:15:03:12
CCA
But you also then have to take a step back and say what is entrenched within us when we look at our policies, when we look at our recruitment processes, when we look at our hiring processes, when we look at our app, is it truly accessible for anybody who wants to come and use our services and access our products?
00:15:03:14 - 00:15:25:20
CCA
There will always be incidences where some people cannot because it is impossible to design accessibility for absolutely everybody because everybody is individual. But the point is, is have you then got the channels where somebody can communicate in a different way if necessary? There's all of these questions that have to be put in place, and people won't think about these things unless they ask disabled people.
00:15:25:22 - 00:15:48:08
CCA
There's a brilliant expression of nothing about us without us, and that goes for every element of identities. Cannot have the conversation about us if we aren't in the room with you, because then you're taking that kind of power of conversation away again. So even the intention is to tear down barriers. But having that conversation with none of us in the room, you're actually creating now another barrier of entry.
00:15:48:08 - 00:16:00:21
CCA
And I think that's how you do inclusion properly is the very people you're talking about are in the room having those conversations with you, and they are leading the conversation, not being told what to do or how to behave.
00:16:00:23 - 00:16:24:20
PG
I love that phrase that you used. Right. And I think we've seen this across all different forms of, discrimination, gender ism, racism, ableism, all of them are being solved by people who have never experienced them. And that's why we are not getting it right. You touched upon a very interesting point there, and I think that's probably what makes it one of the hardest ones to tackle.
00:16:24:20 - 00:16:52:20
PG
It's such a diverse, form of, inclusion that we have to solve for. So what are the practical ways that fintechs can actually adopt, because they have to find the right balance between designing products and services that work for everybody, with the fact that they are commercial organizations, there is a perception there's a huge cost associated with implementing it so that it works for everybody.
00:16:52:20 - 00:17:09:05
PG
So are there things that you have seen work, maybe in other industries or other areas which can remove this fear that, oh my God, it's so diverse. I have to do it for so many people. It's going to be expensive, where actually there are some fundamental things which can get you 80% of the way there.
00:17:09:09 - 00:17:34:01
CCA
Absolutely. So I'll say two things on this. The first being if you are a company providing service and you have customers and consumers, and financial gain is your ultimate driver, when people use the argument and say, well, you know, it's going to cost a lot, I'm going to have to make these changes, okay. But failing to make those changes, you are shutting out potentially 25% of your potential consumer basis.
00:17:34:03 - 00:17:57:18
CCA
So even though there's a cost in the immediate, there is also a financial implication that you are potentially losing because you aren't catering towards disabled people and you aren't accessible any, any organization, especially large organizations that have those financial drivers, will look at the statistics about the potentials that they're losing because they're not focusing on disabled consumers. And go, why do we not do it?
00:17:57:19 - 00:18:15:06
CCA
Why have we not been doing this before? It doesn't make any sense. We're losing so many consumers. Disabled consumers are also very proven to be very loyal consumers, because when we find something that works for us, we tend to stick at it because of the other barriers and the other challenges of moving time, specifically in the fintech space as well.
00:18:15:06 - 00:18:47:16
CCA
Financial decisions can be very overstated, emulating and they can be very complex. So you're going to create 25% more loyal customers. So that's the kind of financial aspect of it. But there's also the kind of ethical and the moral aspect of it. I'll use this kind of phrase as an example. If an organization identified that they had inherent racism within their organization, would they ever dare in 2024 to sit there and say, well, it's going to cost too much money to eradicate racism
00:18:47:16 - 00:19:06:18
CCA
In out firm, so I don't think we're actually going to do it. They would never they would deal with it and they would tackle that head on. So why do we not have the same attitudes towards ableism as we do other forms of discrimination? Are we anywhere near where we need to be in terms of eradicating other forms of discrimination, absolutely not?
00:19:06:22 - 00:19:32:05
CCA
We still have so much further to go. The ableism has to be up there in the conversation, and currently it's not. And that's what's quite scary. As a disabled person. And I would say kind of, what do we do? How do we move forward in answer to that element as a question, there's a brilliant phrase which is from the point of design, get it right from the outset, and then you don't have to go back and correct yourselves.
00:19:32:07 - 00:19:53:18
CCA
And, you know, every time you're doing an app update, just shove in accessibility measures, shove in, you know, alt-text shove in there, shove in that, shove in that. There is so many quick changes that can make real systemic change that people are just overlooking them and not considering that if you adopt the mentality from the point of design, you're going to save yourself a lot of hassle in the future.
00:19:53:18 - 00:20:14:17
CCA
I can tell you that. And we've seen some brilliant organizations who have either corrected themselves or actually reestablished themselves as more accessible firms. But I always use that analogy and say, switch out that word ableism and change it for another ism that we have, such as gender ism or racism or sexism, homophobia. And people will feel very differently about what you're going to say.
00:20:14:23 - 00:20:27:06
CCA
And that would be my advice. Would you say this if there was a different word inserted in there instead of ableism? 99% of the time people go, oh no, I wouldn’t. And so then sit and question yourself as to why you think it's okay to do to disabled people.
00:20:27:08 - 00:20:51:01
PG
I don't know why ableism is not a word that everybody is banging on about at this point in time, right? And I think that's the key. If project nemo can achieve one thing. And and that is to get ableism in the vocabulary of people out there, I think we've achieved our purpose. Right. I think it's a great mindset change of just replacing genderism, raceism and racism and all of that with ableism.
00:20:51:01 - 00:20:57:14
PG
And suddenly I actually it's a no brainer at that point in time. Right? So I love that response. So thank you for sharing that.
00:20:57:16 - 00:21:33:05
WS
Turning to a broader perspective, what role does legislation play in ensuring disability inclusion? You talked about using that really simple, strategy of thinking about, okay, if I replace racism, sexism with ableism, then it is a no brainer because most organizations aren't just going to turn an eye to sexism. So are there any recent changes or gaps in current disability laws that you think need addressing to support that kind of mind shift on the on behalf of individuals and businesses?
00:21:33:07 - 00:21:55:01
CCA
There are massive problems in the legislation, and this is exactly why I do what I do, because I fundamentally believe that if you legislative protection is one of the keys to progression and implementing sustained progression as well, that it does, it's not about who the current leader is or the current campaigns that are happening or, you know, current MPs have a real passion for disability and are talking about it a lot.
00:21:55:03 - 00:22:15:09
CCA
It creates systemic change for the future, and it sets a precedent. And that's what we need is currently there is not enough precedent and behavior is not being ruled out. If you said to a disabled person who can't access their banking app, you know, is this discrimination, they would just 99% at the time if they're not kind of in the disability campaigning.
00:22:15:09 - 00:22:35:04
CCA
Well, that just go, no, this is just how my life is. Rather than actually recognizing that that is a form of discrimination and they have rights as a consumer to be able to access what they need to access from their banking. One of the biggest problems we have, particularly in British standards, is that everything is optional. It's extra guidance.
00:22:35:04 - 00:22:59:01
CCA
You know, even the accessibility standards are guidance. They are not legislative protections. There is not enough written in our legislation about protections for disabled people. We have a fantastic basis in the Equality Act, but the Equality Act is now 14 years old, and there is not a whisper of it going to be updated in terms of disability any time soon.
00:22:59:03 - 00:23:28:05
CCA
One of the things that people will learn that, you know, I know because I work in the policy space, but nobody in the media is talking about as a country, the United Kingdom is currently under investigation from the United Nations around our treatment of disabled people. Most people do not know that because nobody is talking about it. The reason we are under investigation is because we are failing to properly protect disabled people and establish and provide what is needed within society.
00:23:28:07 - 00:23:47:05
CCA
That is shocking that as a country, we are under investigation from the United Nations because we are failing to adopt the United Nations Convention on the Rights of Persons with disability. We're failing. And that's shocking. As a person that now lives in that system, that is campaigning as hard as I can to make sure these legislative changes come in.
00:23:47:07 - 00:24:11:11
CCA
But it's very difficult. It's very difficult because ableism is not treated with the same regard that it should be. And in terms of kind of social movement, we have been campaigning for hundreds and hundreds of years. But in terms of the size of our campaign, we're actually relatively in our infancy compared to other elements of identity. You look at the female rights movement, we're relatively in our infancy compared.
00:24:11:13 - 00:24:36:08
CCA
And I think what's scary is there is not enough people that are we have some fantastic disabled members of Parliament and we have some fantastic allies and supporters. But there is not enough conversation around disability and politics. And one of the reasons for that is less than 2% of our MPs identify as the disabled. So the very people making our laws do not accurately represent the nearly quarter of the population that identifies as disabled.
00:24:36:08 - 00:25:00:13
CCA
Again, let's bring it back to that analogy. You know that the female representation we are getting closer and closer and closer to it being an equal split, which is fantastic. If 25% of the population were women and we only had 2% of our MPs as women, there would be outcry, there would be uproar like there has been historically, where we are campaigning so hard to see that shift, to create that equal split.
00:25:00:15 - 00:25:23:11
CCA
Again. Why is no one talking about the fact that the very people making the laws about disabled people aren't disabled themselves? There is not that accurate representation of voice. And when that happens, when you don't have proper consultation, when you aren't doing correctly, the very things that are brought in, then don't work properly because the disabled voice hasn't been listened to and the experience hasn't been heard.
00:25:23:13 - 00:25:41:05
CCA
But that is in no way to take away from the fact that we have seen incredible progression over the last couple of years. So you had Doctor Liam Fox with the Down's Syndrome Bill, and we've had British Sign Language now being recognized as an official language. There has been progression in the last couple of years. Are we moving quickly enough?
00:25:41:07 - 00:26:03:06
CCA
Absolutely not. Technology and AI is evolving, and we need that legislative protection to keep up with that ever changing world, when currently we're operating with rights that were designed 14 years ago, and the world now is not the same place that it was 14 years ago. We have to be better at keeping up with the developments that we have in society.
00:26:03:11 - 00:26:29:10
PG
Brings me to this concept of advocacy and campaigning. What you are saying is we need to make changes in our legislation, but for that to happen, we need to have the right representation, which is reflective of the society and the community we live in. But also we need to be able to push the agenda and bring it to the forefront like it has been done for racism or women's rights or many other forms of discrimination.
00:26:29:10 - 00:26:54:02
PG
So how can we create the right types of campaigns? What works, and how do we get it to the same level of prominence and support that has, finally gotten us ever so closely to our, objectives on women's rights and all of that? It's interesting. I mean, if I look at this panel, it's an intersectionality at its best, right?
00:26:54:02 - 00:27:08:09
PG
So we are actually probably representing a group that is fighting for a lot of different causes. But what works, what can people do to really support and push, the campaigns, and create more advocacy on this topic?
00:27:08:11 - 00:27:23:24
CCA
I think, I mean, it's a brilliant question, and it's almost like asking what's the key to the universe, because some things work and some things don't. And I'm so happy to see that project nemo is doing so incredibly well. And having had those initial conversations right back at the beginning, it's been so incredible to kind of watch that journey.
00:27:23:24 - 00:27:43:08
CCA
And I think why things work is people feel like they can relate. One of the biggest misconceptions, and one of the things that as a disabled community, we struggle with so much is that people shoehorn disabled people into conversations about social care and about health care, and that is it. You know, that's where our conversation is. That's where we lie.
00:27:43:11 - 00:27:58:21
CCA
Those are the things that we think about most, not as our doctors and our carers and our nurses. True. I do think about that a hell of a lot. I think about that all the time. It's one of the biggest conversations that I have with myself on a daily basis, and I have to be conscious and aware of.
00:27:58:23 - 00:28:18:05
CCA
But I also have a life. I have a life outside of that, whatever that life looks like for an individual. Our lives are not just about health care and social care. And I think that's one of the biggest misconceptions, is that people don't understand the fact that this conversation around discrimination, disabled people is about every single aspect of our lives.
00:28:18:07 - 00:28:51:19
CCA
I want to thrive, not just survive. And currently we've built this kind of routine. And this section, which, yes, the health care is there, you know, does it have its flaws? Absolutely. But am I so grateful for the NHS? Absolutely. You know, there is the care system. Is it good? No. But is it that. Yes. We've been so focused on this mentality of people just surviving that there has been this forgetting this of the fact that people also want to thrive and have a life and use their own money and earn their own money and have fun and participate and have friends and go out.
00:28:51:21 - 00:29:14:16
CCA
And that is what makes it successful. That is the key to advocacy is finding out what people actually want, because people haven't asked us before. We've been so forgotten in the timeline the kind of campaigning and advocacy people have forgotten to ask us what we want. You know, you asked disabled people, what is it that you feel like could be done better?
00:29:14:18 - 00:29:34:12
CCA
You know, one of the responses is going to be, we want to be able to earn my money and then go and spend my money on whatever I want to spend my money on, just like everybody else does. And that is the key to success, is actually listening to people and realizing shock, horror that us disabled people want to be able to live and contribute in society as well.
00:29:34:14 - 00:29:58:02
CCA
But people that don't know about the kind of medical and social model of disability. I can't not do things because I'm disabled. I can't not do things because you will not allow me to do them. It's not me, it's you. And I always kind of recognize that campaigns will never work in terms of disability, and the intention will be utterly wrong, and disabled people will not get behind it.
00:29:58:04 - 00:30:17:19
CCA
If you're focusing on the fact that the problem is the disabled person, we're not the problem. Society is the problem. The number of disabled people has hit in the UK, a quarter of the population, it's 17% of the world. That figure is going to grow and it's going to grow quickly. We are an aging population. We are a growing population.
00:30:17:24 - 00:30:45:09
CCA
There are environmental factors at play as we live in an ever more polluted world. That number is going to grow. So deal with it now before it becomes even a bigger problem than it is now. And as a disabled person who's lived through this kind of story of whatever this is, for it to get worse is unimaginable. And that's, you know, this is exactly why organizations and projects that project nemo are here is to put a stop to that and an instant stop to that.
00:30:45:09 - 00:31:08:11
CCA
People need to tackle things head on with the severity that it deserves. It's not just about, you know, doing training or doing speech. How do we create systemic change? How do we change people's mindsets? Yes, we can change one person's mindset. How do we start that kind of as a sustained change. And that's what's really important, is changing mindset as well around disability.
00:31:08:13 - 00:31:29:13
CCA
We're not something to be said. We want to enjoy our lives. We are just like everybody else. This concept of normality is just absolute crap. There is no normality and we all need to start understanding that a little bit more. That is the expression, isn't it, of the fact that round peg, round hole or disabled people are square peg trying to get into a round hole?
00:31:29:18 - 00:31:45:22
CCA
There shouldn't be a hole in the first place. Society should just work for everybody. And so there's that kind of shift around mindset. So trying to put us into it, change the environment around us. And I think that's how that's the key to success. That would be my advice.
00:31:45:24 - 00:32:07:14
WS
The statement that is really resonating with me that you said is we want to thrive, not just survive. And it is so powerful because I do think as a society, a lot of us with any type of marginalized background, we are just surviving. And for a long time we thought that was enough, but it's absolutely not. So thank you so much.
00:32:07:14 - 00:32:24:13
WS
Just thank you for joining us, Celia. I feel as though I have learned so much, and I feel so galvanized in terms of the work that we are doing with Project Nemo to get us to a place where it's like, let's do away with all the holes. Like, let's just create a society where everyone can thrive.
00:32:24:15 - 00:32:47:05
CCA
Like I hear time and time again, people saying thank you when they give an accessibility you measures, it works and people send emails and I do it to where I'm like, even when we reschedule this call, I'm so sorry. I was at home to thank you so much. That is just prime example of how far we have to go, is the fact that people that receive reasonable adjustments, and why is it even called a reasonable adjustment?
00:32:47:05 - 00:33:07:01
CCA
Tell me what would be unreasonable? If somebody needs something to do their job, they need something to do their job. I hope that one day we reach a point in society where people aren't saying thank you for receiving their basic human rights, because accessibility is a human right. It's not privilege. And right now, very much kind of outside the disabled community, it's seen as a favor.
00:33:07:01 - 00:33:31:08
CCA
It's seen as a level up. It's seen as an advantage. While this person gets to work from home, that's not fair. Or they get a specific computer and it's better than mine. Accessibility isn't is a human rights or privilege, and we need to stop labeling it as such. And when we think about when we strip it back down to all people receiving the human rights that they deserve, if your answer is no, you have a systemic problem.
00:33:31:13 - 00:33:52:04
CCA
And that needs to be addressed just as you address any other form of systemic problem. We have systemic problems absolutely everywhere in our society, across all sections of discrimination, and we have to find a way to join that conversation together, that we're not just looking at sexism, we're not just looking at racism. We're looking at everybody together and going, where are the problems?
00:33:52:08 - 00:34:12:17
CCA
Because so many of these issues affect one single person, and that person is so left out of the conversation, and that is incredibly harmful. If we strip it back down to is somebody receiving their basic human right? If your answer isn't yes, you've got a problem. And there should never be a conversation of, well, how much is this going to cost to fix?
00:34:12:17 - 00:34:18:16
CCA
Or, you know, what do we need? No, it I'm sorry. No, that would be my answer to that.
00:34:18:17 - 00:34:44:16
WS
I mean, hell yeah. This has just been an incredible conversation, and I would love to spend the whole day just talking about how we can get this system right. But we are coming to the end of our time together. So before we sign off, we just have one final question. When we ask all our guests, if fintechs could do one thing differently to make themselves more disability inclusive, what should that be?
00:34:44:18 - 00:35:13:23
CCA
Think about all disabilities. Don't just think about one particular disability, or 1 or 2 or three. You need to think about disability as an entire conversation. Prime example shutting down branches in person. For someone like me who requires to speak face to face and all of the time, that is incredibly damaging. If you are not providing a backup of you know, welcome, press two for this or there are so many types of disabilities and you have to include them all.
00:35:13:23 - 00:35:34:14
CCA
And you also have to think about intersectionality within the disability umbrella as well. Very rarely does a person have one disability. Most of the time we have multiple things that we're trying to balance and juggle going on at the same time. So if yes, I can now access it using mouse navigation. But now I can't do x, Y, and Z.
00:35:34:14 - 00:35:54:13
CCA
What's the point? It makes everything that has been done up to that point redundant. We have to make sure we're thinking about all of disability at whatever chosen, why people choose to identify with. But that would be my biggest piece of advice is what works for one person might not work for another, so making sure that you're doing as much as possible for everybody.
00:35:54:15 - 00:36:14:04
CCA
Also, I recommend all adults as well. I'm sorry, the bet I'm not going to clap. I think this is quite a controversial thing to say. I'm not going to clap you for making one change. I'll clap for you when you finish the journey. And quite often people want praise for making small changes like alt text or, you know, actually using captions on their videos.
00:36:14:06 - 00:36:33:22
CCA
I'm not going to clap you for that, because that's not an achievement. That's achieving basic human rights of someone being able to access your material the same as everybody else. I'll clap you when the journey has finished and I think that's what people need to realize is that this is an this is a never ending process. There will never be an end point because AI technology is developing so fast.
00:36:33:24 - 00:36:44:09
CCA
So you have to keep up with that and you have to put in place a sustained program of change which follows your company. Just like how other programs of policy you have do.
00:36:44:11 - 00:37:11:13
PG
Nice one. Thank you so much, Celia. I'm so energized and actually feel even more validated that what we are trying to do in Project Nemo is the right thing. And, ableism needs to be in the vocabulary of every person out there. It almost. I feel like it needs to be taught in school. It needs to be talked about in every possible, opportunity that we get.
00:37:11:13 - 00:37:21:12
PG
So that's loud and clear. Thank you again. The work you're doing is important. It's needed. And, and thank you again for taking the time and coming on our podcast.
00:37:21:18 - 00:37:22:11
CCA
Thank you so much.
00:37:22:17 - 00:37:36:10
PG
And to all our listeners, thank you for listening in, to our second episode of Accessible Finance by Project Nemo. Stay tuned as we bring to you more interesting deep dives into topics related to disability inclusion. Thank you.
