Sinéad Burke's keynote transcript
Sinéad Burke
I didn’t think I would start this morning by crying and being emotional. Emily, thank you so much.
A brief visual description—and Emily, thank you for the mention of fashion up top. My name is Sinéad Burke. I’m the CEO and founder of Tilting the Lens. I’m a white, cisgender woman. I use the pronouns she and her. I have brown hair that is not coping well with today’s humidity. I’m wearing a custom navy Gucci jacket, black wool Prada trousers, a cashmere jumper, and Ferragamo heels—which will mean something to some people and nothing to almost everybody else.
Before I go any further, I want to just take a moment to thank all of the people who have made today possible. I know that the Foundation has been mentioned, but I specifically want to thank Robin, Alessandro, and Anna for the volume of hours, time, energy, and commitment, and the wider team that have made today possible and feasible. Thank you.
I’m going to try and do the inaccessible thing of holding cards, a microphone, and a clicker all at the one time, so thank you for your patience.
To give you a bit of a sense and introduction into who I am: five and a half years ago, I founded Tilting the Lens. We are a business—and very critically and importantly, a business. We’re a strategic accessibility consultancy based across Europe. My colleagues are based in Germany, Spain, the UK, and Ireland, North and South. We are a majority-Disabled team, an all-female team, and we take a disability justice approach to our work, which fundamentally is ensuring that we leave nobody behind.
But what is it we do? We drive system change to create the conditions for Disabled people to be successful. The UN Convention on the Rights of People with Disabilities is fundamental, but my ambition is that it does not go far enough. Yes, Disabled people have the right to work, but Disabled people should also have the right to be leaders.
We do this work across three different types of services: Built Environment, People and Workplace Culture, and Product and Service Design. But what does that mean tangibly?
In Built Environment, what I’m really interested in is, yes, compliance. But the reality is that for the majority of Disabled people, particularly those through an intersectional lens, compliance does not support their meaningful access. And in many instances, particularly in emergency and evacuation, it leaves them vulnerable and in great risk of harm. So, how do we create buildings that are accessible, beautiful, and that give everybody the agency that everybody requires? We’ve been very fortunate over the past two and a half years to be working on Chanel’s global headquarters in London, to be thinking about how a 15-billion-dollar business can not just employ Disabled people today, but how a Disabled CEO can be there in the very future.
In terms of People and Workplace Culture—and what I’m particularly interested in for a global business—one of the great challenges in supporting the employment of Disabled people is that the definition of disability differs in every territory. Do you know that if you’re in Italy and you have ADHD, technically, based on the legal definition, you’re not disabled? But what about if you get promoted and move to France? All of a sudden, the company and the country has a legal mandate to provide a reasonable accommodation and a reasonable adjustment for you. This is not creating the environments for Disabled people to be promoted and to thrive in organisations.
So why aren’t we ambitious to think about either a regional, global, or a business definition of disability within any organisation or government that supports a broadening and increasing remit for those who are neurodivergent? We know as fact that many definitions of disability are outdated and do not include those kinds of Disabled people, should they choose to identify as Disabled people. That is something that we should be working collectively to solve for, to ensure people do not fall through the cracks.
And lastly, in Product and Service Design—whether it’s fashion (I’ll tell you more about that later) or whether it’s thinking about: how do we design bank statements for people with intellectual disabilities and neurodivergent people so that not only can they engage with their bank statements independently or with assistive technology, but that it creates the pathway for them to think about getting investments, getting a mortgage, and getting financial interdependence?
In thinking about this work, we do it through audit, research, strategy, design, policy, and training. But one of the things I’m really interested in is how do we make sure that as we’re all doing this great work together, that we move the dial collectively rather than each working in silos? Late last year, we introduced our very first white paper, which I will show you in just a moment, which you can download.
But just in thinking about this process of working together—maybe just a note, and I’ll do this at a very high level, but looking forward to talking about it over the next three days—we don’t use the framework of Universal Design. We don’t use the framework of Inclusive Design. We use the framework of Human-Centered Design. The reason why we don’t use Universal Design is that of the seven principles, none of them create a criteria for the aesthetic of what is being created. Which, when we think about the design of accessible bathrooms—perhaps if you can raise your hand—how many of you have ever been in a beautiful accessible bathroom?
How many of you have ever been in an ugly accessible bathroom? Because when we design for Disabled people, we never think about their dignity or the idea that they might want a space that is beautiful. In thinking about Inclusive Design, the notion is we design for one and we extend to many. But what about if we just have to design for one? How do we build flexibility and dignity into our processes from the very outset? Centring that individual end-user and Human-Centered Design is thinking about all the barriers that exist and the opportunity for greater innovation.
I mentioned the white paper; on screen, there’s a screenshot and a QR code which can be available for you now and/or later.
We engaged with over 150 Disabled people across the world to understand: what is it that they need from designing, both in terms of products and in terms of clothes and footwear? Some of the baseline statistics that we received was 91% of Disabled customers report that they would buy multiples of an item if it was accessible. That idea that Disabled people, should they have the economics to do so, create customer long-term lifetime value. But also that 94% of Disabled people shop online because retail is still deeply inaccessible. Within this white paper, we have also open-sourced and developed our framework which you can use.
But this is the piece that I really want to delve into.
Under the UN CRPD, it asks and makes sure that Disabled people are consulted as part of the process. One of the key things that we learned within our white paper and our documentation and our research is how often, in terms of Disabled people, their engagement and their consultation is extractive. What that means is often that we go to Disabled people, we ask them for their pain and their trauma and their barriers, and then those of us with good intentions go off to create solutions with the desired outcome that eventually things will get better—with no guarantee or no sense of responsibility or accountability that, in that moment, their lives will be bettered, or that they will be engaged in the feedback.
Often a traditional model of community engagement, which feels transactional, is underpinned by the pillars of: a lack of feedback and outcomes; a lack of economic progress in the sense that often we find that our budget is small, so we “can’t pay Disabled people” (but a budget is a moral document); the research process in of itself is inaccessible and rigid—we ask Disabled people to assimilate based on our own tools; physical spaces and transport are deeply inaccessible; and we expect Disabled people to do the emotional labour and the physical labour that is required because we are listening. There’s bias and leading questions, and there’s a failure to account for intersectionality.
By that, I mean: are we deeply engaging with Trans Disabled people? With Disabled people from working-class backgrounds? With Disabled people from developing nations? With Disabled people who are migrants and refugees? Or is it the same Disabled people that we engage all of the time?
At Tilting the Lens, this is the model that we have developed and will continue to iterate. Co-design must be led by Disabled people. It must be intersectional, and it must be mandated that we leave nobody behind.
Access should be a baseline. We should not be asking people if they have any reasonable adjustments and then we will put access in place. Access should be proactive. It should be deeply embedded, and people should not have to do the work of articulating their access needs to be present. It should be multimodal. We should be creating new economies for Disabled people, even in areas where, for example, to receive money means there is a risk for benefits—we should be finding other ways to ensure that Disabled people are valued. And it should be iterative. It should be constantly reviewed with the right people in the room to ensure that progress occurs.
And what does this mean in thinking about the next three days?
I’d like to leave you with one question. Everybody in this room and those who are watching online is leading with good intentions. We want a more accessible and equitable world. But in order to do that, we must acknowledge, unpick, and redo the ableism that lives within all of us. As we think about progress, this is my ask to you: so often over the next few days, we will hear talk of “the end user,” “the service user.” I need us to lift our ambition of Disabled people and to not just think of Disabled people as people that we consult, as people that we hire but never promote—but for Disabled people to be leaders.
Lived experience is intellectual property, and it is a set of skills. And that lived experience and intellectual property translates into a skill set not in spite of barriers, but because of them. And if we in this room are not creating the pathways for Disabled people to be leaders, systems will never change.
Go raibh míle maith agaibh. Thank you so much.
