At the Ecsite Conference 2022 in Heilbronn, one of our keynote speakers was disability activist, writer and podcaster Sinéad Burke. In this speech, Sinéad challenges the science engagement community to make its spaces and activities as accessible as possible for disabled people and gives examples of institutions that epitomise her description of true accessibility.
[Mairéad Hurley]: Hi folks, good morning, a very warm welcome to our first keynote address of the Ecsite 2022 Conference. My name is Mairéad Hurley and I’m here to introduce this morning's speaker. I’m sure all of you will agree it's absolutely wonderful to be gathering here in person together again after so long apart and I’m delighted that we also are retaining some of the innovation that was forced upon us during the pandemic and so for the first time we're actually also live streaming our keynote address and so I’d like to also extend a warm welcome to the members of the Ecsite community who are joining us online, so wherever you are in the world, you're here with us this morning too.
For accessibility purposes I’d like to start with an audio description of myself: I’m a white cisgendered female, I have shoulder length brown wavy hair I’m wearing a white shirt and brown trousers.
The reason I’m here with you this morning is that I’m a member of the Ecsite Annual Conference Programme Committee, the ACPC, and every year we get to do what really does not feel like work: we get to meet together and discuss and debate whose voices we believe our Ecsite community needs to hear from and so for the last couple of years I've pretty much not shut up about this person and I’m delighted to welcome her here this morning. Not only because she's Irish and she's hilarious and that always gets a vote from me, but because I believe everybody needs to hear from her. She is an inspirational role model and she really challenges our thinking in how to do better and to create a better and more inclusive world for everyone.
Sinéad Burke is a writer, an educator and an activist. In 2020 she founded the accessibility consultancy Tilting The Lens who work with clients including global brands such as Netflix, Gucci, Pinterest, Starbucks and Ralph Lauren to create more accessible policies and practices, products and services and places. Sinéad is a podcast host, she's a writer, she's written a children's book called Break The Mould, she is a member of Gucci's Global Equity Board and she serves on the Irish President's Council of State. She has spoken on the TED stage as she gave a TED Talk in 2017 on why design should include everyone and I’m just absolutely thrilled and delighted that we get to hear from her this morning. So please join me in giving a warm welcome to the magnificent Sinéad Burke!
[Sinéad Burke]: Good morning, thank you for that overly-kind introduction Mairéad, and thank you to the Ecsite community for the welcome here today. I think this is the largest group of people I have seen for almost three years! Hello!
For accessibility reasons I'll also begin with a visual description of myself: I’m a white cisgendered woman who uses the pronouns she and her, I have brown shoulder length hair - it's a little bit long at the moment but don't mention it - I am wearing a blue full-length knitted hexagon print Gucci dress…casual…full-length for a conference like this was an interesting choice…and I am visibly and physically disabled. I have achondroplasia, the most common form of dwarfism, but I describe myself as a little person. I stand at the height of three feet five inches tall, or 105 centimeters, and if we were doing this on Zoom or Microsoft Teams you may not be aware of that visual difference but it's incredibly obvious in person.
I’m really honoured to be meeting with you all today - when the team at Ecsite offered the invitation to be here the rationale and the reason for saying yes was due to the influence in this room: whether you are science communicators, cultural professionals or lead in museum and institutions of that nature, you have the opportunity to create space for people to belong, and through your exhibitions, work and communications narrate who gets to be part of this world.
The work that we do at Tilting The Lens is about building a more equitable and accessible world for everyone and that's rooted in my lived experience both as a disabled woman but also as an educational professional. My background is in the classroom - I’m an elementary or primary school teacher by trade. Some of my best experiences have been working with 12-year-old boys in the inner-city in Dublin challenging their need to code switch between home and school. So my ambition for today is creating a broader understanding of language vocabulary and also opportunities around accessibility so that everybody can be part of the Ecsite community - not in a way in which they are just welcomed but explicitly invited.
Context and Vocabulary
So to start with context and vocabulary, I have a question for you: what's the opposite of disabled? Now I’m conscious there are multiple languages in this room and that may differ depending on the languages that you speak, but what's the first word that came to your head? Able? Any others? Normal? Thank you to the brave person at the back of the room - because that's the reality, right? We think about ‘us and them’. Or if you're me, ‘us and them’. But my opposite of disabled is non-disabled because as we think about the way in which language shapes our society we don't just name objects but we put boundaries around who gets to exist. I don't view disability as a bad or negative thing but that's a shift we have to come to. Because whilst I self-identified as disabled at the beginning of this session and we have sign language interpreters joining us on screen deliberately because when we were participating in a conversation with Wiktor and the wider team at Ecsite we asked if anybody had any access requirements and if there was a need for a sign language interpreter. They said no. How is there no need for a sign language interpreter in a room of this size? But also, how do we set up the infrastructure so that if somebody deaf did want to participate it is the norm and not by which they have to ask for an exceptional accommodation?
We understand that in terms of a disability community it's about one in four people, so my guess is at least a quarter of this room is disabled. But you may not feel comfortable identifying as disabled because in terms of the spectrum of disability it is far wider than we initially perceive it to be. Because disability can be visible and invisible; it can be physical, learning, sensory; it can be a chronic illness, it can be mental illness, it can be neurodiversity. So if you have anxiety looking at me on stage: welcome! You're disabled. If you have long-COVID: welcome! You're disabled. If you've had cancer or a loved one has or an eating disorder or ADHD or dyslexia or OCD, or if you're autistic, all of those diagnoses fit within disabled. But due to what you perceive to be the opposite of disabled, people don't feel comfortable identifying.
Disability can be inherited like mine or acquired but it can also be accidental. How many of you ski? [Lots of audience members raise hands] That is a disproportionate number of skiiers in the room! How many of you have fractured a bone while skiing? It's most of the people who ski. Many of you were still able to go to work after you fractured a bone while skiing? Three of you - no, five.
Disability is part of each of our lived experiences. It is the only identity group in which we are guaranteed to be part of throughout our lives: it is part of the human life-cycle because I hope we each have the privilege of getting old or going skiing. This is not us and then this is all of us at any time. And that's not something to feel hindered by but to be empowered by, and when we think about how language shapes our society as science communicators and those who exist within cultural institutions it's incredibly important that you have a stance on this but understand that even as a community, the disabled community differs in terms of how they perceive it.
So do you talk about impairment or disability? Do you talk about person first or identity first? Meaning, do you talk about disabled people or persons with disabilities? I’m really proud to be disabled. I would not be on stage in front of you today if I wasn't disabled. That is not because the only merit or value I hold is that I am useful in a photograph or because I’m disabled, but that identity has shaped my perspective on the world and also my professionalism in the same way that my Irishness has, my womanhood has, my whiteness has. The way in which the world perceives me and I the world. So I proudly describe myself as a disabled woman and would encourage you to shift your language from a nervousness to one of culture, community and pride. Because the reality is the reason why I ask the question as to what's the opposite of disabled: we have gone through these models of disability and many of us in this room sit at a different part of the axis. As scientists you often look to disability through a medical model. Your modus operandi is often to find fixes and cures, but who wants to be fixed? Who says? So how do we move from thinking no longer from eugenics to medical to charitable to social but to one that's radical and formed around intersectionality and justice and equity, and how are you thinking through this model when you put together your work? Because the reality is we are not that far from the eugenics model.
This is the American Eugenics Society and what's on this poster talks about “unfit human traits such as feeble-mindedness, epilepsy, criminality, insanity, alcoholism” - we won't talk about last night – “pauperism and many others run in families and are inherited in exactly the same way as colour in guinea pigs. If all marriages were eugenic we could breed out most of the unfitness in three generations.” What is the opposite of disabled?
Now you may think the eugenics model was an incredibly long time ago, and it was, but the reason I wanted to speak on this stage now is because the pandemic was a mass disabling event. But also, how we treated disabled people during the pandemic was incredibly problematic. If we look to our neighbours in the UK for the moment: six out of ten COVID deaths in the UK were disabled people. Globally, disabled people went into hospital with COVID-19 with ‘do not resuscitate’ orders because in a moment of limited resources non-disabled people were valued more than disabled people. In the US, if you were a disabled person who went into hospital with your own ventilator there was research that says that that ventilator was taken from that disabled person and given to a non-disabled person because their lives were worth more. All at the same time, not one COVID press conference in the UK for example had a sign language interpreter. The Jubilee yesterday did have one, though.
So, how do we think about this? When we talk about language, often we feel like saying the wrong thing is so easy that we will just say nothing at all. Language around disability continues to evolve but our move from the medical model to the justice one has meant that we've tried to limit our discomfort around language and come up with euphemisms. I’m not asking anybody to raise your hands but how often in your programming do you talk about the ‘differently-abled’ or ‘all abilities’ or ‘special education programs’ for those with ‘special needs’? One of my call to actions for you as a group is: let's no longer use those euphemisms and proudly look to the word of disability, because when we distance ourselves from the language we underline our lack of commitment or consideration for this community. So let's not talk about ‘differently-abled’ or ‘challenged’ or ‘crazy’ or ‘blind-spot’ or ‘deaf ears’. Some of the words that I use? ‘Wild’. All the time. Because you may not be affected by those conditions but people who do are listening. So I think one of the standalone points that I want to speak to you today about is disability is not a negative word.
Mairéad, if you don't mind me using an experience you shared with me earlier, Mairéad was telling me a story that her four-year-old child was in a shop recently and came across somebody who looked like me. Is anybody a parent in this room or has a cousin, nephew, niece, child? Yes, so let's imagine that your child sees somebody who's different - what's the first thing they do? Stare? Point? Do they say anything? Yes, they can't help themselves. Ask questions? So what usually happens to me in that moment is like I'll be in a space, usually a supermarket, and a child would be like, ‘Look!’ And any of you have been in that experience you're like ‘Oh god, we need to leave this place immediately’. So what do you do as the adult, you distract them with something shiny on the shelf and you're like, ‘That's lovely, that person is different, but please look at this thing!’ and the child is like, ‘No that's really boring - look she's in a full-length Gucci dress in the middle of Heilbronn!’. And then the parent doesn't know what to say so they say nothing.
Instead of facilitating their curiosity in education and realizing that their own vulnerabilities is not a reason by which to not move forward and say, ‘Yeah, that is a little woman! Why don't you say hello?’. Not that it's the responsibility of anybody and everybody who is diverse to facilitate that conversation just to exist, but we need to start somewhere in moving forward so that child will say ‘Hi’, I'll say ‘Hi, I’m Sinéad’, and they'll go – ‘Oh…you're boring. I thought you would speak differently, I don't know…have antenna? No? Oh, weird…’ and will go on about their day.
But our practice as people - particularly often through a scientific lens - is to unfortunately be apathetic, not through intention but through our own lived experience because we don't want to cause harm. But the reality is we are prioritizing our own discomfort versus somebody else's inclusion. How do we not make it about us but about them? And we can do that by facilitating the conversation. We start with: disability is not a negative word. We're going to move forward to thinking about accessibility in just a moment, but before we do and leave this section, I want to be really clear particularly in a room like this how important intersectionality is. What we are seeing now in terms of a movement from cultural spaces in terms of the inclusion of disabled people is co-design which Mairéad and I are going to speak to later, but we need to ensure that as we do include disabled people you are not just including those who fit the most normative definition of disability. You have a white, cisgendered male wheelchair user who's straight? Great - happy pride! But we need to look to the research of Kimberlé Crenshaw which talks about the ways in which our different identities intersect and the importance of those who are multiply marginalized to be part of this conversation.
We need to think broader. And the rationale of coming to speak with you today is that I can't tell you the amount of exhibitions and science conversations that I have been part of where people tell me it's ‘accessible’. And what they usually mean is ‘available’ or, ‘affordable’, or that there's a ramp. So how do we rethink the definition of accessibility to be more broad? At our company Tilting The Lens, this is the one that we are working to that's continuously iterating. We believe it to be an evolving practice, one that includes the intersectional participation of those who've lived experience of exclusion - it must be key to each stage from the very beginning not as an afterthought or something that is consultative. It must be designed with disabled people not for disabled people, and true accessibility builds inclusion, equity, agency, creativity, innovation and pride.
The Business Imperative
But whilst you are cultural institutions or scientists you also need to ensure that your funding models are secure. So there is a business case to be doing this. Because often we say ‘well it's the right thing to do but if we don't make this part of the business of the organizations that we work within we will never have capacity or resources or time to make this meaningful’.
So the reality is is that one billion people live with a disability - it's the same size of the population as China. Over 15 percent. But we know that through the CDC in the US, long-COVID is now considered a disability under the Americans With Disabilities Act, so if I was to ask, ‘who has had COVID in this room and who continues to have implications from that?’, many more of you be disabled than you might first identify. We also know that the disabled population is 1.9 trillion US dollars per year, bring in their family and friends in terms of their spending power and it's about 7.9 trillion US dollars per annum, but the stark reality is that disability and disabled people have an employment rate of 28.8 percent lower than that of non-disabled people, so regardless of where you come from in the world it is most likely that 50 to 75 percent of disabled people are unemployed and my ask of you today is that when we think about accessibility it's not useful to just think about this from a visitor perspective, because that visitor may enter into your space for one hour in a year. This is about recruitment. This is about succession planning for your organization. This is about creating spaces for everyone.
I got to have a great conversation at the gala dinner last night which I was over-dressed for - crystals in Heilbronn…it was a look - which was thinking about the ways in which we consider accessibility through these cultural institutions in a way that's more than buildings - I have some ideas for that later on. But in terms of the final rationale about the business case we know that according to Forbes, 10 billion dollars is going to be prioritized to organizations that look to accessibility through a creative process in the next three to five years.
Legal Implications
And now everybody's favourite: the legal aspect. Because what we know from an accessibility perspective is that often we only think about this through compliance. We look to the standards. What was supposed to be a starting point is often considered the end point and disabled people are expected to just accept that in terms of their access, but it might be worth a reminder of what it actually looks like legally, because we often talk to compliance not realizing the wider remit that's there.
So under the Americans With Disabilities Act, museums have to provide equal access and service to their venues for all audiences. Employees are not referenced. Collaborators are not referenced. But also, what does equal mean? Rather than equitable, because if we run a race in these heels, in this dress, equal is that we all start at the same time, equitable is that I get a head start. So what does it look like in terms of the law and practice and reality?
And a very long slide, but the EU has adopted the UN Convention on the Rights of People with Disabilities which says that disabled people have a right to participate in cultural institutions. But what we know is that in terms of the impact of the world around us, disabled people are often fighting for health care, access to education, that the idea of entertainment is an idyllic panacea that we never reach, but how do we move from compliance to creativity?
I think this is where we consider the moral obligation. This is my rationale for speaking with you today: museums and cultural institutions shape society, your venues create experiences and conversations. Whom we open these buildings up to and invite in defines who we include in society at large.
Can anybody remember the first time they went to a science exhibition? There's more of you than you think, because otherwise you wouldn't be doing this job! Was it a good experience? My guess is ‘yes’, because again you're doing this job! How many of you could have been in this room but aren't in this room because that wasn't a good experience. Whether that's because they couldn't get in the front door and had to go around the back entrance? Whether that's because in terms of the material that was happening on the walls or in the space, it wasn't the right font, it wasn't the right size, or that actually in terms of the representation of their lived experience it was problematic. My guess is this is a room of people who have had a positive experience mostly within the space. How do you use that privilege to create space for others?
So we have a bit of a framework that we worked to which is about looking to a system of awareness, advocacy, policy, culture and system.
Awareness - because we don't know what we don't know. And creating space for our own learning.
Advocacy - because this isn't just one person's responsibility in an organization or in a project but it’s everybody's.
Policy - because if it's not part of the day-to-day practice of you as an individual scientist or as a person who works in a museum this becomes optional.
Culture - because what you do in those spaces creates permission for others.
And system: I’m going to pick on Brad because he and I spoke at dinner last night, and he was telling me that in terms of the UK and London that often the directors of all of those cultural institutions come together. We were talking about accessibility and the limitations of being in historic and protected buildings, and I said, “Great, why don't you all come together and challenge Westminster to do better?”. I’m putting poor Brad on the spot. But why do we limit what we think our power is? Well, probably because we've been told to but can you imagine if all of the leaders in this room said, ‘you know what, we no longer want policy and legislation to be a hindrance about the spaces we can occupy and who we get to enter’.
We really want to reimagine accessibility from a historical perspective - it has been done - but we want to create a space for everyone. I’m not sure all of the governments in the world could exclude all of you together, but the challenge with this work is that it's often individuals going up against the system. What about if the system was the advocate?
The Innovation Opportunity
Because that's where the innovation opportunity comes in. I’m often intrigued by cultural spaces: my colleagues and I went to see a play in London about four weeks ago in the Almeida Theater in North London: amazing space. The play had a full-size, working swimming pool on stage - I know, for a four-week production! You know what the building didn't have? A lift. We can get a flying helicopter on stage at Miss Saigon, but no lift! Wild. And the same in the spaces that we occupy - we can often put, I imagine, a full working rocket in a space museum, but we can't imagine a beautiful ramp because again, we think about this through the medical model and from compliance rather than using all of those creative skills that exist.
So I want to just take you through a timeline that I would love for you to consider, and we're looking to specifically around the visitor journey, but we can look to it when we speak to Mairéad, thinking about how you engage with different stakeholders from a science perspective.
So marketing: let's do a quick checklist in terms of your branding: is a colour contrast accessible? If you don't know the answer to that please spend your free afternoon inquiring. In terms of your social media posts - do all of your images have alt text? Are all of your videos captioned as a policy standard in multiple languages? For anything specific do you have audio descriptions? Do you have intersectional representation in any marketing that you present to the world including visibly and invisibly disabled people? Website and ticketing: how accessible is it? I've just come back from the Venice Biennale - casual - which is fully accessible, but even the English website I couldn't buy tickets on because it was still in Italian. I had to hand it to my colleague Michael, and I was like, ‘just tell me! I’ve spent 40 minutes - which one do I need to buy?’ How do we think about that, do you have a Captcha on your ticketing facility? If you have a Captcha, it's inaccessible to anybody who's blind or low vision or autistic who uses screen readers. What you think may be a security is also inaccessible for others. In thinking about your website, is it beyond compliance? When's the most recent time you've audited it?
Thinking about transportation: do you offer information to potential visitors and guests about where the local transportation is? Is it accessible if you're looking to public transport, does it have step-free access? Where are you located or are we assuming that everybody has the information that they need and the resources to do so in order to be able to get to you? In terms of your building, what information are you providing?
As organizations we often don't talk about our level of accessibility. Why? Because it highlights our level of inaccessibility - so we are reluctant to say we have a lift because we have three concrete steps at the front, or we are reluctant to say that we have a lift, but it only actually goes to two galleries, it doesn't go to the top floor where this exhibition is. But again, we are prioritizing our own embarrassment rather than somebody else's access. And we say to people, ‘what level of accommodations do you need?’ without ever articulating what we're willing to provide.
Communication is the biggest key to accessibility and the wonderful thing about this venue is you're all science communicators. So how do we begin to communicate what is available rather than othering people and expecting them to do the work in order to be able to participate?
The same with the exhibition space: have you been using the Smithsonian accessibility guidelines to look to the type font? To look to the height and the size of the type font? At what point should resources be hung? I love going to exhibitions but being three foot five inches tall is always a challenging experience because everything is hung at a point in which there is a reflection on the glass, so I see nothing. So I often have to look at things from a six foot gap, or look through it from a photograph from someone else and that's not just about me, but that's any child who visits a space or a wheelchair user or somebody who's older. How are we thinking about that?
And lastly, accessible tools and technology: we're working on a program at the minute where we are participating with a San Francisco-based startup called Aira for people who are blind to low-vision. So if you are an Aira user you log into the app on your phone and you're connected to a real life person in multiple languages 24/7. That person through your phone can look out the back camera and guides you through a space. Can you imagine if you had that available for every exhibition or every project so that it was equitably accessible for people who are blind or low vision? Transformative.
But as I said earlier accessibility is not just important for your visitors, it is also important for artists, scientists and researchers because when we talk to projects around disability or accessibility we make the assumption that they are non-disabled and led with support from those communities. We talk about stakeholder engagement rather than equitable design and precipitation from the outset.
But it's also about employees and visitors. How much talent are we missing out on particularly with the great resignation because disabled people can't access your spaces? As part of doing this conference it was really important that we had a remote and virtual option for this session because we all have the privilege to feel safe in this space. Lots of people with chronic illnesses particularly do not, so there may have been many people who have been your colleagues over the past two years who are now in a difficult position as we all go back to work who may not feel safe. So how do we think about that?
And we start with this: I’m conscious that this may be a phrase that you are already very familiar with: ‘nothing about us without us’, which comes from the disability justice community, specifically black, queer, disabled people. But what we have found is that this has been misinterpreted. What has now happened is ‘nothing about us without us’ has meant that we include disabled people or those who are at the margins of society at specific parts of our work rather than them having equal decision making from the very outset all the way through.
Case Studies
So I want to share some examples that I think are really interesting, but I’m very conscious that there is enormous expertise in this room. I don't doubt that many of you are doing this work in smaller and larger organizations and projects. Our e-mail is readily available - I would love to learn from you and if we can support you in that process, please do call on us. I realize putting an image of the Mona Lisa and a disabled person is tricky this week, but this person is actually disabled! There's only a quiet murmur - I feel like I need to explain that or it's too soon and people are reeling: so earlier this week a visitor who attended the Louvre dressed themselves as an older person and used a wheelchair to get closer to the Mona Lisa and rubbed cream on the glass protector…problematic, also not great representation of disabled people and access in a cultural space!
But what we know is that the Museo Nacional del Prado held an exhibition called Touching the Prado which included six 3D touchable renderings. So how do we think about different types of users and experiences, but also if you're putting together an exhibition or a space do you have a 3D map that somebody can feel their way through, that you can share with them in the post or you can send them the rendering and they can 3D print it themselves if that's an option that they have? So that the first time they're not coming into the space it doesn't feel like an unknown.
In terms of the Tunbridge Wells Museum and Art Gallery - they created a tool kit to give guidance to small and medium-sized museums about engaging with visitors living with dementia. And I think that toolkit is really exceptional and key because I don't doubt that there's a number of individuals and organizations who have such resources in this room. Share them, because if we're all trying to reinvent the wheel we will only get so far in this process, so let's learn from each other.
And the Canadian Museum of Human Rights in Winnipeg which was established by the Acts of Parliament in 2018 is now one of the world's most accessible museums. Thinking through a very holistic lens that it is by design rather than an afterthought.
And lastly, Beningbrough Hall made a Grade 1 Listed Building more accessible. Because often we talk about the concrete steps or the staircase from 1920. But when do we stop putting buildings before people? When do we stop saying architecture - my apologies to the architects in the room - is more important than access? That our visual landscape has more value than potentially allowing disabled people to access? Why does that not make us uncomfortable? Why do we say something beautiful is more important than agency?
I don't think the solution is deconstructing every architecturally-protected building that exists. I think we just have a responsibility to imagine what access could look like because we design a ramp to be ugly silver metal and not beautiful. Hands up if you've been to the Guggenheim in New York? Anybody know what the Guggenheim is? What Frank did? It's a ramp. But we don't think of it as a ramp because Frank Lloyd Wright is a very impressive architect who built a spiral. It's a ramp. You know what a fashion runway is? It's a ramp. So why can we imagine it beautifully in some circumstances but when we think about disabled people we cannot? That is our bias. That is our belief that disabled people are less valuable than others: let's challenge it.
A Holistic Approach
So in terms of what's needed as a solution is a holistic approach. This is why we work through people, places, products and promotions.
So let's think about your recruitment strategy for just a second - whether you are bringing on stakeholders onto a science-based project or your cultural institution, at what point do you ask people do they have access accommodations - when they get the job? Or do you ask them and provide it in the job description? Because guess what, most of you are probably not creating accessible Word documents or PDFs, so the job description itself is not accessible. Or your website isn't in terms of thinking about places we spoke to. This is how can you provide information that gives people insight into what can be expected in terms of products - whether that's exhibitions or whether that's new drugs, which I think Mairéad and I are going to talk about? How can you ensure it's equitable and in terms of promotion and your marketing, how are you thinking about it from the very beginning? Because we know that you may think of this as a cost. We need to move to a mindset that this is an investment, a long-term investment, for who we want to be, but if we don't do this by design it's 40 to 100 percent more expensive to do it afterwards.
So I’m going to stop hogging the mic soon, but in advance wanted to share with you some takeaways: disability is not a negative word. Please say the word disabled. Don't use euphemisms but do create space for other disabled people to be able to self-identify with language that's comfortable for them.
Create with disabled people not for disabled people. The disabled community is not a monolith. Most other little people disagree with me - as is their right, I think they're wrong…I’m joking. Intersectionality must be a value and a pillar to this work. Our attempts at inclusion should not be othering by design. I'll give you an example of this: it's going to be a fashion example, my apologies. Those who define themselves as fat or plus-sized have been speaking to the fashion industry for such a long time, be it luxury or fast fashion, looking for options and what it is that they want to wear. The fashion industry said ‘sure we'll give you options - six of them. They'll all be grey, there'll be no tailoring, they'll be down the back of the store with a big sign that says PLUS-SIZED. You're welcome.’ For anybody who's had to experience that - what is it like going through that store to go down to the very dark corner to find items that were chosen for you without any lived experience as part of the process? You then have to go to a changing room that is not designed for you. It is so undignified.
And often in science we experience the very same process. I cannot tell you the amount of appointments that I have been to as a child, all the way through to my adolescence when the doctor comes in and says, ‘I’m just going to bring a few students, is that okay? They've never seen anybody like you before’, and I’m like, ‘sure, I’m four, I have no real agency or autonomy here, but yeah, let me do my gait analysis for all of you and you just look at me.’
Where is the gap between education, communication, progress and agency? Let's not ‘other’ by design, even if our intentions are good, the process might not be. Everybody should leave this space today with this question: asking at every possible opportunity – ‘is this accessible?’, taking the broadest definition of what accessibility could mean. And then ask yourself, ‘who is not in the room?’.
As you begin to think about Ecsite next year in Paris – no, where are we next year? Malta? Even better! No offense to Paris! We have work to do for the Paralympics, call me…! How do you think about Malta next year, ensuring that there are lots of people who are not in the room over these three days part of the fabric of Ecsite? Not just onstage, not just giving the keynote, but participants like all of you. And it's easy to think about that in a conference in advance, but wherever you go home to, how do you do that in your own work too? I’m very conscious that I have just lectured you for 40 minutes with brief moments of humour that was mostly at my own expense, but I now have the great privilege of welcoming Mairéad back on stage, and I just want to thank you so much for your time and engagement, and I really do feel like this is such an important room and the idea of what you will do over the next decade and the ways in which you will create space for people to belong is a huge honour and privilege. Go raibh maith agat! Thank you so much!
Today also can we take one moment to thank Wiktor who has been doing such exceptional work, and I know that he is not the only member of the Ecsite community who has been doing this but can we give a warm round of applause, should that be accessible to you, to the whole organizing committee. I know that for some people this is their full-time job and for many others they have lots of other commitments too. To bring this many people together and to facilitate this is no small feat, and I know we had a bunch of like very demanding requests so I’m very grateful and congratulations to the Ecsite community!