Transcript of Equal Too Episode 4: Design for All
[MUSIC: ‘Rising Phoenix’ performed by georgetragic]
There’s a young boy
Walking through obstacles
Cut up from all the surgeries
Prosthetic picture perjury
Telling me, I’m normal
But normal, they never really made me seem
They always painted me
Discriminated but levitated …
[Music fades under speaking]
YOSHIHIKO KAWAUCHI: Right now. I don’t think our society has a consensus to have people with disabilities have rights of transport.
SINÉAD BURKE: We live in a world that wasn’t designed for us. We have to move through systems and policies that were never designed with us and with us in mind.
MICHAËL JÉRÉMIASZ: My goal is not to make 100% of the French city physically accessible, but I want 100% of all the citizens to just never discriminate someone because of his ability or inability to put one step after the other.
VICTOR PINEDA: We have choices and we have opinions and we have ideas and we have desires, but they’re all limited in the way the world is constructed, in the way that we interact with it.
[Music comes back in with sung chorus (Performed by Toni Hickman)]
I’m a rising phoenix
I’ll rise above you
I’m a rising phoenix
I’ll rise above you
[Music fades under narration]
SOPHIE (narration): We live in a world that is not designed for everyone. You don’t believe me? Whether you’re Disabled, or non-Disabled, I bet you’ve experienced a moment, if not several moments, when you have felt excluded and frustrated. Think about it, ever used a computer mouse that’s only designed for right-handed people? Worn a dress without pockets? Ever thought about how your smartphone doesn’t really sit that comfortably in your hand? Struggle to open a piece of packaging or read the small print? Well you’re not the only ones.
Kat Holmes, the Senior Vice President of Product Design at Salesforce describes this as a ‘mismatch’ between the person and our environment. For Disabled people these ‘mismatches’ can be the difference between inclusion and exclusion, between being able to work or live in poverty, between being able to live a life with self-respect and a life lived on the margins of society. The ability to contribute, communicate, integrate, thrive – even survive. It’s like Haben Girma said to me about her experience as a deaf blind student at Harvard:
HABEN GIRMA: So I work as a disability rights lawyer addressing ableism. I’m also a writer. I published a memoir called Haben: the Deaf Blind Woman Who Conquered Harvard Law. I did not overcome my disability. It was Harvard that had to overcome ableism.
SOPHIE (narration): If the world around us enabled us instead of disabled us, what would be the consequences? The sky would be the limit. But the sad fact is, whether it was intentional or not we’ve designed a world that excludes so many of us.
So what can we do about it?
In this episode, we want to hold a conversation about the challenges of living in an inaccessible world. Join me as I speak to athletes and activists, designers and campaigners from around the world to find out what’s happening and what is being done to design a world that is for everyone.
[Music increases in volume and intensity before fading out slowly under narration]
SOPHIE (narration): To begin this episode, I spoke with a famous architect and wheelchair user from Japan called Yoshihiko Kawauchi.
YOSHIHIKO KAWAUCHI: I’m a person with disabilities. Also, I have participated in the accessibility issue for about maybe 30 or 40 years.
SOPHIE (narration): Yoshihiko is one of the great global voices for championing universal accessible design and has been advising Tokyo 2020 on the construction of venues and other locations for the Tokyo Paralympics. He gave us some background to how he hopes the Games will help to bring around change in attitudes towards accessibility in the city too.
YOSHIHIKO KAWAUCHI: I am the first person who ever got in touch with Ronald Mace who is the founder of the concept of universal design.
[MUSIC: Slow beats under narration]
SOPHIE (narration): Universal design is the process of creating products that are accessible to people with a wide range of abilities and disabilities. Universal design typically results in an outcome that benefits a variety of users, not just people with disability. An example of this would be a sidewalk ramp, or a cut curb, or even an elevator.
YOSHIHIKO KAWAUCHI: Tokyo the city has the most elevators compared to other big cities. But our accessibility challenge has started from [the year] 2000. Almost all stations had no elevator. So that means we have achieved it within 20 years, very short. However the problem with Japan is attitudinal issues. Attitudinal issues means human rights or things of equality or dignity. Internal change is required for Japanese people. Internal change, it means to look around the environment and say what is the best way for me to do in this environment? Like using the elevator or using escalators or using the stairs. Such kind of smart, clever understanding is not fostered in our society.
SOPHIE (narration): It is hard to know yet whether or not the 2020 games has made an impact on the attitudes of the Japanese towards Disabled people, but what we do know is that Tokyo has been on a significant journey to improve the infrastructure of the city to be more accessible and inclusive. And this is in part down to architects like Yoshihiko.
In an earlier episode we heard how the Paralympics in 1992 left the host city, Barcelona, a more accessible city and we also know that Beijing and London saw significant improvements. So we have proof that the Games can make an impact on the host cities – as long as they have the right leadership, motivation and investment.
AUDIO FROM ADVERT: “I am the emblem of 2024 and this is my face [MUSIC: positive beat] My face was born from the union of three symbols. The Gold Medal…”
[Advert audio fades under narration]
SOPHIE (narration): So, looking ahead, with Paris 2024 fast approaching, can we expect even more change?
AUDIO FROM ADVERT: “The Olympic and Paralympic flame, which brings people together through the power of sport…”
[Advert audio fades under narration]
SOPHIE (narration): I spoke to former French Paralympian Michaël Jérémiasz, an advisor to the Paris 2024 Organising Committee, about Paris, a city where less than 10% of the metro system is fully accessible to people with all types of disabilities.
MICHAËL JÉRÉMIASZ: I moved to London three years ago. So I’m a French man living in London, and enjoying my life here. I didn’t leave Paris because I didn’t like Paris. I was born there and I love Paris. I love my country.
SOPHIE (narration): I asked Michaël about his experience of living in Paris and London, and his hopes for Paris 2024 and if he believes the City of Lights will ignite the change we need.
MICHAËL JÉRÉMIASZ: Well there are many obstacles in Paris. Paris is a very old city, Paris hasn’t been thought and made for Disabled people, and especially for people in a wheelchair that’s for sure. When I arrive at the train station and I travel a lot between St Pancras Station and Gare du Nord in Paris, there’s a really big difference. The accessibility, the way they look at me when I just ask for my cab. And yeah, of course, I’ve experienced many, way too many times discrimination with taxis telling me “it’s not going to fit” or “how am I supposed to do that?” Or “you should call a professional cab”. No, in London the question is not even raised. All taxies are accessible. I’ve never seen someone looking at me with this look of “I’m taking you but I’d rather not take you”.
When it comes to taking the metro? I mean, the metro in London is an option. It’s not perfectly adapted, it’s not perfectly accessible. Far from that, but it’s an option. Not all the stations are accessible, but sometimes I can use them. And you always have someone coming to me and asking me where I’m going to make sure once I arrive there, there’s a lift functioning, stuff like that. I just feel like here it’s not special that I’m disabled. When I go in a restaurant, I don’t even think before – I mean, most of the time, not all the time – I’m not thinking is the waiter going to look at me like he’s embarrassed because it’s a bit crowded or because the toilets are on the minus floor or the first floor? Just like that is what I’m aspiring to. Just being like the others, you know? And in Paris and in France, we are far from that.
My goal is not to make 100% of the French city physically accessible, but I want 100% of all the citizens to just never discriminate against someone because of his ability or inability to put one step after the other.
[MUSIC: Futurist beat]
MICHAËL JÉRÉMIASZ: Infrastructures have to improve in the next three years, in the next decades, because the Games are not just two weeks. It’s years and years before and decades after. It’s all about legacy.
SOPHIE (narration): Okay, it’s clearer than ever now that the Paralympics have the potential to change a city for the good. But do we need to rely on the Paralympic Games to come around before a city’s infrastructure is audited for access? Obviously this should not be the case.
Surely only thinking about accessibility when a city is home to a Summer or Winter Games is not enough. However important they are as a catalyst for change.
Take London, for example – where I live and work as a wheelchair user. After the 2012 Games, we may have seen improvements to the level of accessibility and inclusive design such as on the DLR line. But even for a more economically developed country, one who has ratified the UN’s CRPD and even has an established Equalities Act to protect Disabled people – there is still a long way to go before the UK is accessible for all.
AUDIO CLIP: London underground train doors opening/doors closing
SOPHIE (narration): Katie Pennick, a campaigner at Transport For All, went viral documenting her journeys around London’s streets on Twitter, and has helped to bring recognition to some of the physical barriers facing Disabled people on public transport in the capital and across the UK.
AUDIO CLIP: Underground train pulling out of the station
KATIE PENNICK: Getting from A to B is about more than just the modal forms of transport. You know, there’s no point having accessible buses if you can’t get to the bus stop. So it’s also about street space and the built environment, and a huge part of that is about the pavements. So we see all sorts of problems. You know, a lack of tactile paving, uneven, steep pavements, narrow pavements, pavements that are cluttered with objects.
SOPHIE (narration): Katie isn’t optimistic that change is happening at the right pace within the UK, especially if contrasted to the transport systems in neighbouring European countries.
KATIE PENNICK: The Netherlands has made a commitment to level boarding, I think within the next ten years. Barcelona, their metro system is something like 95% accessible, and when they say accessible, they mean genuinely step free level boarding. You can roll on, which is amazing. 84 stations on London Underground out of 270 are currently step free. However, obviously we know step free is a bit of a misnomer in this situation because some of those depend on manual boarding ramps. I think it’s about half of them, you need a manual boarding ramp. So in terms of genuinely step-free level boarding stations, I think it’s about 40 out of 270.
AUDIO CLIP: Underground train pulling into a station.
SOPHIE (narration): Perhaps we have to ask ourselves what we mean when we talk about accessibility, because inclusive design, or universal design, appears to mean something different depending on our perspectives. What is accessible to one Disabled person may not be to another. And it’s impossible to achieve success if advocates, designers, architects and policy makers are all working to different goals.
VICTOR PINEDA: Well, let me start off with two really big ideas,
SOPHIE (narration): Dr Victor Pineda is the President of the non-profit, World Enabled and leads the campaign, #Cities4All, which encourages governments to design spaces for everyone. I asked Victor about the differences in approach.
VICTOR PINEDA: Disability isn’t just a phenomenon of individual or even just a social construct. Disability is an interactive experience, kind of like Kat Holmes talks about with a mismatch. And even more specifically, it’s really, in essence it’s a deprivation of human agency when interacting with the environment. So what that means is that we have choices and we have opinions and we have ideas and we have desires, but they’re all limited in the way the world is constructed, in the way that we interact with the world. When those barriers exist, we’re deprived of human agency. Now, inclusive design, universal design and accessibility all seek to expand human agency, they seek to unlock potential, they seek to open up new modalities of interacting with the world around us. And so I think when we think about these words, we should first center on the fact that they all have a very similar end objective, which is to identify limiting barriers and unlock human potential.
SOPHIE (narration): So, when we think about accessibility, we design for compliance and minimum standards. Imagine a standard accessible bathroom – the white plastic grab rails, the higher toilet, and the wide door mean that as a wheelchair user I have a level of independence. But the design is so clinical. It doesn’t give me a sense of pride, or agency. It reminds me that I am disabled. It reminds me that I am different. What if we could re-imagine accessibility so that it could be beautiful? It could be stylish. We rarely put these words together, but we can and we must. Because Disabled people belong in beautiful spaces too!
One way to achieve that is to find designers with a lived experience of disability themselves. We spoke to Christina Mallon, head of Inclusive Design at Wunderman Thompson, and asked her more about her inclusive design process.
CHRISTINA MALLON: The work that I do really stems from the fact that both my arms became paralyzed about 11 years ago due to motor neuron disease. And I was working as a marketer at the time and felt like I didn’t see myself in the ads. But, you know 20% of the world have a disability. So, you know, I really came on this kind of adventure of helping brands create more inclusive advertising and then really shifted towards product design in addition to marketing, because a lot of times the brands were saying, “well, we have the marketing, but we’re not sure how to make the products.”
AUDIO FROM ADVERT: “Degree has created the world’s first adaptive deodorant built with a diverse…”
SOPHIE (narration): In April of this year, the world’s first accessible deodorant was announced.
AUDIO FROM ADVERT: “there is to be no limits when something moves us.”
SOPHIE (narration): It had a hooked handle for one-handed use, magnetic closures to remove and replace the cap with ease and all of the text details were mirrored in Braille to support those who are Blind or have low vision. Wunderman Thompson and Christina led the design process, taking in feedback from the Disabled community the whole way through.
CHRISTINA MALLON: Wunderman Thompson brought in different members of the community, that are individual activists from different backgrounds, race, sexuality, ethnicity, and just talked to them about their problems with deodorant or other problems with different CPG products. And then we did some sketches. Brought them back to the disability community. They were like “we like this one, we don’t like that one”. And there was mixed reviews on certain things. Some liked really highly potent scents. Others did not. So, we made some revisions to reflect all their feedback…
[Fades out slowly under narration]
SOPHIE (narration): The deodorant has yet to make it to market, but this one case study proves the value of engaging with the Disabled community. It shows companies and designers that lived experience has expertise and to truly create accessible products, it has to be created with us, not for us.
Building accessibility into cities or physical products is without doubt a real challenge because so often we are retro-fitting access – a process which can be complex and costly.
But the digital world, however, is newer and ever-changing. Yet, Disability advocate and Human Rights Lawyer Haben Girma tells us that even in this domain, we are not yet doing enough.
HABEN GIRMA: The vast majority of videos online don’t have captioning and captioning helped provide access for deaf individuals. It also helps hearing people who are in sound-off situations. It also helps search engine optimization. The more text associated with your content, the more people will find your content, Disabled or non Disabled. So one way to make the Internet more accessible is to increase captioning. It’s really just good design. So people who use screen readers, people who use assistive devices, make sure there’s testing by Disabled people. Even better, include Disabled designers as part of your team. Increase hiring of Disabled people at all stages of the organisation.
SOPHIE (narration): Including Disabled people as part of the team is essential for meaningful progress, but having Disabled people lead the team is even better. Sam Latif is the Company Accessibility Leader at P&G and a Blind British Woman. Her lived experience and expertise resulted in company-wide innovation.
SAM LATIF: Companies are waking up to the fact that people are 1) living longer; and that we’re not all born with a disability. You know, we can develop one at any time through age or circumstance. People with disabilities, be it cognitive, sensory or physical, have got money to spend. The more inclusively designed the product, the higher the chance that the Disabled person can and will access it and will continue to access it.
Telling products apart is an ongoing challenge for me and millions of blind people. So many products feel the same from the outside, but the stuff inside is different. You know, full fat and low fat milk, ketchup or mayo, shampoo conditioner and sometimes even more serious stuff like toothpaste or hair removal cream. The list goes on and on. And businesses need to recognise the magnitude of this problem for blind people and the growth opportunity for them.
I created a Disability Challenge, which allowed our [P+G] senior leaders and decision makers to experience for themselves what it’s like 1) not to see well. And next, I started to ask them to tell products apart including shampoo and conditioner. And through this experience, they realized the problem that the blind people experience. I then brought to their attention the subtle solution that I had placed on the bottles, which would indicate to them that a raised stripe was shampoo and a raised circle meant conditioner. And this is a big “aha!” moment for them. Finally! I then asked them to tell me if they would be up for making their products accessible and inclusive in this way, and they wholeheartedly agreed.
[AUDIO FROM ADVERT. Confident music and a montage of voices]
VOICE 1: You just have to rise up
VOICE 2: Skateboarding, surfing
VOICE 3: We just keep going. Get up on the board, keep going.
VOICE 4: Keep going and never give up
AUDIO DESCRIPTION VOICE: Man dancing
[ADVERT fades under narration]
SOPHIE (narration): In 2016, Tommy Hilfiger created their first adaptive clothing collection.
CHILD IN ADVERT: My ability is stronger than my disability.
AUDIO DESCRIPTION VOICE: Boy with CP surfing
CHILD IN ADVERT: I am unstoppable
[ADVERT fades out under narration]
SOPHIE (narration): Esther Verburg, the company’s Senior Vice President for Sustainability and Innovation told us that community engagement is where they also began.
ESTHER VERBURG: We started the line basically in 2016, and it was really out of inspiration also from a lady called Mindy Scheier. She works– she has an organisation called Runway of Dreams, and she always adapts the fashion for her son who has a disability. And she basically approached the organisation and said, “why can I not find fashion?” And we were so inspired. So our first collection basically started with that. It really resonated also with Tommy himself, because from his personal background, he’s very well aware of what it means to have children with special needs. So, yeah, that resonated with him and I think also with the spirit of the company in general. So we started with that. And that first collection, I think, had a lot of adaptations that were mainly focused on, for instance, larger openings or different openings or more openings to help people with braces or prosthetics to actually access the clothing. We had magnetic closure there to also make sure that you can open things, for instance, with one hand. And then we evolved from there.
SOPHIE (narration): Tommy Hilfiger’s journey began through a collaboration with Runway of Dreams, but has evolved due to this increased opportunity for innovation and also, Tommy’s personal experience of Disability; three of his children are autistic.
TOMMY HILFIGER: When the idea came up to do something a bit different for design with people with special needs, I jumped on the idea right away because I thought it was fantastic. I couldn’t believe other people weren’t doing it, other designers weren’t doing it.
SOPHIE (narration): But for large companies, the promise of innovation and the personal drive to create a better world, may not be enough. Leaders want to know – is this a business opportunity? Esther told us more about the fascinating ways digital tech accessibility and fashion collide and firmly believes that their adaptive collections are a gateway to a wider market.
ESTHER VERBURG: So what I think is a really exciting field is the combination of tech and digitisation with fashion. So we already see some interesting innovations in the area, for instance likeconductive yarns that give you information. So sweaters that give you information about the wearer’s movements, for instance, or the wearer’s temperature or other wellbeing elements. And we’ve seen I think it was called Ontenna from Japan. Really cool device where actually for people with a hearing disability, they would translate noise into vibrations and light. And then you can make that into a hair accessory. So those kind of things, I think will be coming up much more. So the smartwear that can help provide extra functionality. But where I get really enthusiastic I think is the opportunity for design-on-demand. So for now, even when we do adaptive, we have to make a choice and we say, “OK, it’s going to be that adaptation to that t-shirt and then that’s what we’re going to produce.” And then you have to have at least so-many hundred pieces of it. I think where it gets really interesting, if we can get to a space where we can say, OK, you can order, you can go online, you can say, I want that t-shirt and then I want it with that adaptation or I want it with that sizing. And the technology is really developing super rapidly around 3D design and manufacturing on demand. So it will click, I think, fairly soon. And I expect within the next five years we’ll definitely see possibilities becoming a little bit more mainstream.
What we have seen for instance is that 75% of the consumers that we get are new, and then 71% of those actually go on and shop also from the main line. And the average order value of people that shop the adaptive line is much, much higher. So that in itself also indicates that there is a real business case for this.
SOPHIE (narration): The business case for disability inclusion is becoming clearer. There are over 1 billion Disabled people in the world – a number that is ever-growing with Covid – and the community’s annual discretionary income is over $1.7 trillion dollars. This catches the attention of business. But does it help us bridge the gap to a more inclusive world?
Sinéad Burke is one of our executive producers, and a leader in inclusive design, and she takes a different approach.
SINÉAD BURKE: There’s one billion people in the world who are disabled. It’s a population the size of China, we often hear, and then we’ll hear that the spending power of Disabled people in terms of their discretionary income is 1.7 trillion US dollars. Bring their family and friends in and that’s eight trillion US dollars, which does, I will be totally honest and say, turn the heads of leaders. Because when everything is about a profit and loss sheet, eight trillion dollars is so much money in terms of trying to activate that audience. But I have really stepped back from solely using those statistics as ways in which to enter into a conversation because it places Disabled people as customers who need to be served, who need to be designed for, who need to be captured and captivated, rather than a methodology of co-design, which invites them in to be part of the process. It focuses Disabled people as spenders rather than as creators, rather than as colleagues. So now, the language that I use is about “did you know that globally the disability unemployment rate is between 50 and 70 percent?” And then I talk about Disabled people being innovators by design because we live in a world that wasn’t designed for us. We have to move through systems and policies that were never designed with us and with us in mind. So we have all of these ideas and innovations and creativity that are naturally within us. So my proposition to companies is now: don’t think about the money that we’re going to spend in your business. Think about how we’re going to make your products, your culture and the way in which you work better in ways in which you could never imagine.
SOPHIE (narration): So, what comes next? How do we include Disabled people in the design process, creating space for them to lead, innovate and build a more inclusive and accessible world for all? Here is Sam Latif on what she hopes to see in the decade ahead:
SAM LATIF: My dream is that inclusive design is built in all products and experiences. There are no barriers for anyone to access anything. I sincerely hope there comes a time when every company knows and implements inclusive design from the beginning, from the outset, resulting in more inclusive experiences for everyone. That no one is left out. That we’re all included and able to experience anything through choice.
I think in 10 years from now, there will be significant progress.
[MUSIC: ‘Superheroes (Rising Phoenix)’ main theme.]
The world will be more inclusive and accessible. I can imagine the products will become easier to identify, easier to open for everyone. I can see the employment rates for Disabled people go from less than 25% today to more than 75% percent in the future.
SOPHIE (narration): We’ve learnt today that so much progress has been made to make the world more accessible and inclusive. But it’s not enough. Right now, these stories are exceptional, but they need to become the norm. Because when the world has not been designed for us, when we face endless mismatches, the only choice we have is to adapt to the world – compromising our needs and our ambitions, forcing us to seek medical or technical interventions that appear to fix us. This is known as the ‘medical model’ of dealing with disability and it’s outdated and outright dangerous.
Surely it’s in our power to fix the world instead so that we can live in it successfully? What if instead of looking to fix the needs of Disabled people, we lived in an environment that matched our needs instead? Would the word disabled need to be repurposed? Redefined? Or totally eradicated.
Design is such a universal medium and impacts our lives in a myriad ways, and yet careless design discriminates everyday. It feels like we have to challenge the norm, design from the start, demand ‘design for all’. Not at the end of a process – but at the start. The stories today have proven that it can be done. It feels like this change is beginning to happen but change is relentless and we need to try and ensure that all design is universal, for us all. From tomorrow.
Are you a designer who wants to know more about inclusive design? Or are you a Disabled person with invaluable insight? How would you like to change the world? Join this conversation at #EqualToo.
Join me next time, when we look at employment – exploring what it’s like to have a disability in business, and how employers can make truly inclusive workplaces a reality.
I’ve been your host, Sophie Morgan. We’ll see you next time.
SOPHIE (narration): These podcasts have been made possible because of the support of Procter & Gamble. P&G share our ambition to create a more equal world. A world where everyone can have equal access and the opportunity to thrive. We are very grateful for their partnership in making these conversations a reality.
61% of people with a direct involvement in the production of the podcast, including guests, identify as Disabled.
This podcast was created by Greg Nugent, co-founder of Harder Than You Think.
I’m Sophie Morgan, your host and Executive Producer.
Fellow Executive Producers are Sinéad Burke, Greg Nugent, Barnaby Spurrier, Laura Ims, Marc Pritchard, and Kimberly Doebereiner.
Thank you to the IPC and Channel 4 for their support, and use of archive material.
Thanks to our podcast production partner Stripped Media, and also to Seneca Women for their assistance with distributing this show.
If you want to follow the Equal Too story, and join the conversation #EqualToo, go to our website htyt.world where you will also find the transcript and video versions of the podcast, along with subtitles and a BSL-signed version in the coming days.
[MUSIC intensifies and ends]