Transcript of Sinéad's speech

My name is Sinéad Burke, and I am responding to Noor Siddiqi, Founder and CEO of Orchid. 

Eugenics is the practice or advocacy of controlled selective breeding to improve the populations’ genetic composition. 

History has taught us that eugenics doesn’t show up first as outright extermination. Usually it’s an idea, even an opportunity, something that could improve life overall.

I am a Disabled woman, and I believe in choice. But is it a real choice if one option is presented as a path with inaccessible healthcare, education, employment, finance and ableism. And, the alternative is a wondrous promise of a life without pain, without friction? 

There is no humanity in a life without friction.

Be wary of that which exploits our fear and shame and masks it as choice.

Disabled people live in a world that is not designed for them. We have little urgency and minimal investment in designing systems and infrastructure to be more accessible. Society’s preference is not to invest in removing barriers, to allow Disabled people to thrive, but instead, invest in our erasure. 

I believe that lived experience is intellectual property. Disabled people are sensational, and are innovators by design; not in spite of our disability, but because of it. 

Our panellists

The panel included four Disabled people who are working across journalism, architecture, teaching, research, and important voluntary services. They were: 

• Scar Barclay (they/them), a neurodivergent designer, educator, and writer who is part of The DisOrdinary Architecture Project. 
• Peter Torres Fremlin (he/him) is the creator of a weekly newsletter, Disability Debrief, and previously worked with international organisations, including UN agencies. 
• Lei Crowe (they/them), a neurodivergent and chronically ill hobbyist researcher focused on queer and crip theories, and sexuality. 
• Heylove Robert Mark Sr (he/him), a disability activist and advocate with 16 years of experience, currently serving as an Administrative Assistant at Age Action Ireland. 

Watch the webinar recording

Webinar Transcript PDF (2MB)

Key takeaways from the webinar

Our definition of accessibility is always rooted in multi-modality. You can watch the conversation back via the video, you can use the transcript, and below, you can find our key takeaways from the discussion. These are: 

1. Prioritising candid information
2. Understanding sensory needs and social acceptance
3. Designing for spontaneity and privacy
4. Co-designing with Disabled people as experts
5. Ensuring equal access to to safety and escape
6. Embracing accessibility hijacking and creative access

1. Prioritising candid information 

All panellists discussed the importance of sharing honest, clear accessibility information in advance. This allows Disabled people to make informed decisions, and prepare themselves for various environments and scenarios. Lei spoke about the essential nature of this communication and transparency for those with dynamic disabilities.

Lei: “I think it’s important to be upfront about what is or isn’t possible at a space or event, so a Disabled person can make an informed decision. I have a dynamic disability, and if I knew there were a few steps, and definitely no ramps, I know I could use a walking stick that day instead of a wheelchair. How do we make something accessible? There are a million different ways people could have barriers to entry to a space, so you are never going to cover them all. But if you are upfront and say these are the barriers, then you can start troubleshooting how to help them.”

The conversation also underlined how accessibility is not just about physical features; it also involves how warmly we welcome one another and the important information we share about how to use a space.

Peter spoke about a local café that he wanted to visit, but as there were steps and no visible ramp, the message, “I am not welcome”, was clear to him. However after speaking to the staff, he learned that the ramp was just hidden away with no signs or messages indicating its existence.

Peter: “Of course we have a ramp. I mean we didn’t put a sign to it, we didn’t tell you about it, there is no way that you would know that. Your experience from all these other places suggests they might not, but of course we do. So they have a little ramp, and they bring it out, and it’s beautiful. I can go in the cafe and have a sandwich and use the accessible bathroom they’ve got.”

Communication is a key element of accessibility. It is great that employers, restaurants, museums and retail stores are increasingly asking Disabled people about their access needs, but this also puts a burden of responsibility on Disabled people. It would be more effective if they shared honest information up front so that Disabled people can respond in an informed way, and if needed, ask further questions.  

2. Understanding sensory needs and social acceptance

No two Disabled people have the same lived experience, even if they have the same disability.

In built environment projects, designing for and with Neurodivergent people has always been part of our practice, and is also becoming increasingly important for our clients in the private and public sector. Often, the first solution that is requested for Neurodivergent people is a quiet room or a sensory room. In our webinar, it was re-iterated by both Lei and Scar that these are two different solutions for different access accommodations, but typically they are treated and understood as if they are the same. Both are safe places for people to decompress or reset their senses in busy or stressful environments, but in very different ways. For some Neurodivergent people, the most accessible way for them to de-sensitise in a space is to scream, release energy and emotion, while for others, their preference is to be in a low-lit space in silence.

• A quiet room is usually located away from the louder or busy areas at an event. Typically, this will be a quiet space that includes comfortable seating, soft lighting, and fidget tools that may help someone to decompress. 
• A sensory room is a space that embraces sensory stimuli. Sensory rooms are often stocked full of many different types of equipment. This equipment is used to assist people to focus on the present moment and to better process sensory information. Stocked equipment may be provided for balance, movement, calming pressure, or fidgeting behavior.

Where there is only a single provision put in place to meet these very divergent needs, one person’s access needs impinges on the other. Designing for both solutions and being clear in communicating what is and isn’t available, and how spaces are most likely to be used is a short term and essential piece of accessibility.

Lei: “The conference is called, Autscape, and I would describe it as a residential anti-conference run for and by autistic people. I find the terms like sensory room or sensory space is used synonymously with a quiet space, when there are actually two aspects of sensory needs, and they can exist within the same person. This anti-conference is the only space that I have seen where they have two different sensory rooms. One is quiet, and you are encouraged not to talk, but there are some fidgets and low lighting. And then, on the other side of the campus entirely, is the sensory-seeking sensory room where it’s music blaring, and people can just scream if they need to.”

There is a need to rethink a sensory approach to design beyond the traditional ‘quiet space’ to also embrace people who are sensory-seeking, and to challenge the social acceptance of disability-related behaviour types in public spaces.

3. Designing for spontaneity and privacy

We learned in the webinar that Disabled people often need to prepare themselves to enter a space. But, like non-Disabled people, our ambition should also be that Disabled people get to be spontaneous, and get to live and exist in the present. This came up in conversation, particularly in relation to transport, as we learned that some access provisions can rob a Disabled person of spontaneity and could be an invasion of privacy. Some public spaces require Disabled people to give advanced notice of their visit so that access provisions can be put in place. This is often framed as a way of managing capacity and resources, but we can’t forget the human cost. 

Heylove: “I have to call the train station for them to arrange their accessible ramp for me to be able to get on board a train to go to school. I have to give my personal details where I am going every time I am going out, […] so it’s kind of weird. I believe getting on a train, there should be some automatic ramp that I should be able to access if I am having an emergency or want to have some spontaneous trips around, so I need to call somebody to come help, which doesn’t sound right.” 

While there is a level of acceptance that this may be necessary for some older sites, planning for efficient accessibility in newer public spaces should offset this requirement.

The primary goal of accessibility is to enable equitable experiences and independence for Disabled people and others with access needs. Accessibility is iterative, and when we have resources and provisions in place, we should feel empowered to continue to gain feedback, audit and iterate our solutions, so we can continuously improve.  

4. Co-designing with Disabled people as experts 

When designing buildings, public places and spaces for society as a whole, those that are tasked with design responsibilities should be representative of society and welcome everybody. This allows us to bring in the perspectives of different kinds of people, and to design public spaces that focus on how different people use buildings and public areas across the human lifecycle. We learn that society’s needs are often complex, overlap with other parts of identity, and change as people get older.

Deliberately co-creating with Disabled people, as early as possible, will be fundamental  to the design process. When buildings and public spaces truly reflect how people will actually use them, the result will be spaces that are more environmentally and socially sustainable.

Designing without Disabled voices leads to systemic exclusion, while co-design drives more effective solutions. Disabled people must be recognised and valued as experts, innovators, and decision-makers.

Peter: “I write a newsletter called Disability Debrief, and the idea is that disability gives us a new lens on the world and new lens on design and how we use spaces. The lived experience is so diverse, the way that Disabled people move and see through the world and experience it shows us a new way of understanding spaces and accessibility and how they’re used. Another thing as a designer that’s important to do, as we have all kind of been saying, is finding ways to listen to that diversity and feedback and co-creation with Disabled people is a huge asset.”

5. Ensuring equal access to safety and escape

Of course accessibility is not only about getting into and around a building; it is also about feeling safe and knowing that if an emergency were to arise, you can evacuate safely and with dignity.

This should include the use of evacuation lifts in all new multi-storey buildings, and ensuring that building management plans and the fire safety plan include the needs of Disabled people 

That may sound daunting but it really involves giving extra thought to who may require assistance and planning ahead. For example how someone who cannot hear a fire alarm can be alerted visually or with vibrations, making sure that building users are familiar with evacuation routes where they are not the one they used to enter, and ensuring that the staff are trained in how to direct and support people who may need assistance to exit.

As with everything we have discussed, asking the Disabled person rather than making assumptions about what they may need is important.

Scar: “I want people to be aware that I am in the U.K., and we obviously had Grenfell in the last few years, and that caused revisions to fire regulations. One of the things they didn’t adopt is around Disabled people having a right to escape. There was one aspect around them putting PEEPs (Personal Emergency Evacuation Plan) in place for people in residential buildings, and not making it difficult and that was the thing that got omitted. We think of fire regulations being robust, however, they have let Disabled people down and there needs to be conversations on how people experience refuge spaces and being left in refuge spaces. So the measure I would put in is that all new builds have to put evacuation lifts in, and they need to do proper training around the management plan, around safety, and around their fire strategy so people reliably enter buildings and know they are going to be safe.”

6. Embracing accessibility hijacking and creative access

Lastly, a phrase that came up again and again during the webinar was “accessibility hijacking”. The phrase was introduced by Lei to talk about the innovations for access they have seen by Disabled people, specifically for organisations and individuals that are working with low-budgets. 

Lei: “[A Queer social group] found a way to have an accessible space for multiple different needs. They rented out a music rehearsal venue, and because of the needs of instruments being quite heavy, all of the various access differences on the floors were negotiated with very gentle, sloped ramps, and because of the needs of people who are rehearsing in this space at the same time. It’s that ingenuity, when you are locked out of built-for-purpose options, that I love in queer and Disabled communities, that they hijack accessibility.”

Scar talked about their love for Carmen Papalia’s piece, “Mobility Device”. Papalia is a Blind artist who explores wayfinding and new methods of navigating the world. In 2015, Papalia replaced his white cane with a marching brass band to explore a London park. 

Scar: “Disabled people are always hacking their environment because the built environment has not been designed with diverse Disabled people’s needs in mind, so we are the most kind of creative people to respond to an environment that hasn’t desired us back. […] I really, really loved Carmen Papalia’s Mobility Device. […] It wasn’t so much that the brass band were necessarily leading him, but he was leading the brass band and starts to question a lot of these ideas about wayfinding, about playful understandings around accessibility and how we relate to other people, whether it’s about independence or interdependence.” 

We often see that the simplest approach is the most effective, accessibility does not need to mean a big spend. Often, offering different options to people with a range of accessibility accommodations ensures that everyone has a welcoming experience. Creative and simple solutions such as signage and colour contrast, printing information in larger fonts, providing a resting place, and offering different heights and types of seating.  

This webinar has focused on the built environment but how a building is used, but design alone cannot be the solution. As we know from our work in people and workplace culture, and product and service design, it is the framework of people, digital and infrastructure that create true accessible environments, cultures, and societies.

Q&A from the audience

We were so pleased that our webinar audience joined us from at least 15 countries and throughout the conversation, they were very engaged with information, feedback, resources and questions. Due to the timing, we didn’t get to answer all of their questions, but we wanted to share them below along with some responses to spark further conversations.

P.S. They also shape our planning for future webinars!

Universal design and participatory design

Question: Why is there not more evidence of participatory design?

Answered by Sinéad (Tilting the Lens): This is a question that we spend a long time thinking about. Participatory design is sometimes a synonym for co-design, or consultative design. But, the reality is that the process, outcomes and power structures for each of these approaches greatly differ.

I do think that we are seeing more examples of co-design and of new policies, programmes being developed with Disabled people. Some of this progress is because of requirements under the UN Convention on the Rights of Persons with Disabilities (UNCRD). The UNCRPD sets an obligation for governments and public bodies to meaningfully engage with Disabled people in public decision making.

But, we are also seeing great examples of new buildings, new products, and new ways of working being co-designed by Disabled people. Over the past year, we’ve been fortunate to co-design banking apps, corporate office environments, adaptive fashion and communication strategies with Disabled people. We’ll tell you about them in our newsletter very soon. 

Question: Why isn’t Universal Design applied more often in both physical and virtual spaces?

Answered by Sinéad (Tilting the Lens): The terminology of Universal Design has been in use for a long time, but still, remains largely misunderstood and is often measured against the same prerogatives and the same checklists used to measure compliance with established regulations and guidance, rather than being embraced as a design philosophy.  

At Tilting the Lens, we are specific in our approach and in our language. We deliberately speak about our work as human-centred design. We feel this is an evolution of universal design and inclusive design.

Adaptive fashion

Question: What are specific apparel needs and considerations for independent dressing or comfort? What are the primary difficulties found in clothing accessibility?

Answered by Laia (Tilting the Lens): In 2025, Tilting the Lens published a report called, “Co-designing adaptive fashion with the Disabled community”. The report was based on co-designed research with Disabled people globally about their barriers and difficulties around fashion. The report also provides a framework for the fashion industry to move beyond basic compliance to genuine inclusion.

Protected buildings

Question: What is the panel’s view on protected (historic) buildings that refuse to make adaptations to allow for access?

Answered by Orla (Tilting the Lens): There is a misconception that a building protected for its heritage is exempt from accessibility legislation, which is not always the case. The approach differs across the globe and it can be complicated, but generally speaking, while the owners or managers of these buildings must seek additional statutory permissions, that does not mean they do not need to consider what can be done. And often, the onus is on them to justify why heritage should be prioritised over accessibility.

Advocacy in the workplace

Question: How can a neurodivergent person, especially one at a lower level of a company’s hierarchy, successfully advocate for organisational awareness of diverse access needs? 

Answered by Emma (Tilting the Lens): I really like this question and wish I had explored it earlier in my career. Since much of my work now focuses on improving the reasonable adjustments process in organisations, I would suggest starting by researching your employer’s policies, processes, and materials on reasonable adjustments and disability, as well as their overall commitment to inclusion and access. This is important to understand how you can access the supports you need to be successful, whilst also being an opportunity to see if their stated values match their actions. Talking with members of Employee Resource Groups (ERGs) can also be very useful. Even if there isn’t a specific group for disability or accessibility, other ERGs can give valuable advice on how to advocate within the company. Also, I would seek out a senior colleague who is an ally or has openly shared their neurodivergent experience. Building a mentoring relationship with them can be really rewarding.

To give you an example of this kind of work, I recently supported ASOS on enhancing their engagements with their Disabled employees.

Where do I start with accessibility in the built environment?

Our panellists weighed in with their ideas about where to start today. 

Heylove: “First thing that needs to be done is to do an accessibility audit and with other Disabled people and fix the simplest barriers immediately […] like adding portable ramps and the signs and prioritising seating areas. Spaces where Disabled people would occupy.”

Peter: “One of the distinctions I make is between access hardware and access software. The hardware of these physical things, whether the steps, the lifts, or the tactile surfaces or hearing loops. They are normally harder things to change. But if you’re a designer, one thing that you can do from the first point is change the software. Change that way how people are greeted and what information is available, and how the space is used, the processes that you get support or adjustments.

At Tilting the Lens we say to start where you are. We believe that meaningful change is often about progress and iteration, not perfection. It’s about all of us, at every level, embedding these practices into our budgets, contracts, leadership commitments and day to day tasks. 

References and resources

From the conversation:

• Peter runs the newsletter Disability Debrief,
• Scar works at The DisOrdinary Architecture Project,
• Scar mentioned Studio Pacifica,
• Scar mentioned the artist, Carmen Papalia and the Mobility Device project,
• Lei mentioned the Autscape conference.

Tilting the Lens resources:

• From audit to equitable environment – one of the most accessible and human-centred experiences for schools in Ireland, read the RDS Science Blast case study.
• A neurodivergent-inclusive workplace audit case study to improve workspace accessibility.

If you don’t want to miss our next webinar, make sure to sign up to our mailing list.

Programme details

Running for 5 months from July to November 2026, the programme aims to develop participants’ screenwriting and networking skills, with a focus on strengthening their scripts and developing their idea, rather than finishing and polishing a final draft. 

This programme offers tailored support, delivered online and/or in person depending on participants’ access needs. It includes training, peer networking, workshops, talks, Q&A sessions with leading industry professionals, and one-to-one mentorship. Support will be provided by creatives both within and outside the film and TV industries, including Disabled and non-Disabled experts. 

The session will run twice a month on Wednesday, in the early afternoon. Outside of these sessions, writers will work on their scripts and work with their mentors. 

A bursary paid in installments will support participants through the programme and cover associated costs with developing their scripts. 

While most of the sessions will be hosted online, the programme will end with a table read event in-person. This will take place in Dublin city in November 2026, where the most recent drafts of the scripts will be read out by professional actors. 

The National Talent Academy for Film & TV Drama and Tilting the Lens will meet the access requirements of the selected applicants, while adjusting the programme accordingly, and cover the associated costs. 

“From the get-go, Screen Stories was a game-changer for me as a screenwriter, but it also opened up my eyes to the possibility of becoming a director. Having people in your corner is always a treat, but between Tilting the Lens and the National Talent Academies, they encouraged me to aim for more. I spent so long fighting to get my foot in the door of the film industry, but by expanding my skillset through the workshops and building on my confidence with my mentor, I eventually found myself inside the room.”

Louise Bruton, Screen Stories Participant. 

Eligibility

Applicants must:

• Identify as Disabled, including physical, sensory, neurological, neurodevelopmental, mental health or medical conditions,
• Be aged 18 or over,
• Not be in full-time education,
• Be resident on the island of Ireland, or an Irish applicant living abroad who can attend sessions scheduled in GMT.

Applicants should demonstrate an interest or engagement in creative writing across any form, including film, theatre, literature or other creative disciplines.

Applications are open to both individuals and co-writing teams, provided the project is centred around a Disabled creative.

Apply for 2026

Applications are open from now until Tuesday, 9 June 2026 at 12 noon. 

The application process has been carefully designed to be as accessible and equitable as possible. If you are a Disabled writer, or part of a co-writing team led by a Disabled creative, with a vision for a fiction short film, we particularly encourage you to apply.

Together with the National Talent Academies, we are committed to continuing this work: dismantling barriers, investing in talent, and amplifying Disabled creatives to tell the stories only they can.

For more information and to apply, visit the National Talent Academy website: Screen Stories Course Information

Information Session

An online information session and Q&A will take place at 12 Noon on 26 May 2026.

Further details and registration are available via the NTA website at Screen Stories Course Information

In November 2024, I received an email from Andrew Bolton, the Curator in Charge at the Costume Institute at the Metropolitan Museum of Art, New York.

I first met Andrew in the restaurant at the Victoria and Albert Museum in London during the press preview of his touring exhibition, ‘Savage Beauty’. That was over 15 years ago, and in the time since, I have had the privilege of spending considerable time with Andrew and the wider team at the Costume Institute – always curious, always advocating, always learning. 

Andrew’s email read, “I’m working on our spring 2025 and spring 2026 exhibitions. The latter is focused on fashion and the aesthetics of embodiment. I’d love to speak with you about it at some point.” That email led to many, many conversations. 

To rewind a little, The Costume Institute, is a curatorial department of the Met focused on fashion and costume design. And to rewind even further (this is relevant, I promise) the Costume Institute began its life called the Museum of Costume Art, a venture by Irene and Alice Lewisohn, as they worked in theatre and developed an archive of costume, set and stage design. The Costume Art Museum was expanded into the Met in 1946, but remained independently run until 1959, when it became a curatorial department.

From 1946 to now, the Costume Institute is solely responsible for fundraising to cover and fund the department’s operating expenses. It is the only curatorial department at the Met required to raise its own operating funds. The first Met Gala was designed and hosted in 1946 to fund these operating costs, and it has grown from there. 

The 'Costume Art' exhibition

The 2026 exhibition ‘Costume Art’ came through many iterations over that time, and is now open in the Condé Nast Galleries at the Met, celebrating seven types of body, including a section on the ‘Disabled Body’ and how it shows up in both fashion and art. 

Over the past 18 months, Tilting the Lens has been proud to support the Costume Institute with a number of key objectives:

• Consulting on the curation of the ‘Disabled Body’
• Consulting on the Costume Art catalogue
• Training for the volunteer guides
• Supporting greater accessibility at the exhibition’s private opening and fundraiser, the Met Gala. 

On a personal level, I also contributed to the exhibition via:

• Participation in mannequin development, and 
• Donating two pieces from my wardrobe to the Costume Institute’s permanent collection.

‘Costume Art’ is an exhibition that underscores the validity of fashion as art, if it was ever in question. It also demonstrates how, unlike many other forms, an argument could be made that fashion exceeds art, due to the transforming nature of embodiment. But what does this mean? In plainer terms, when a person wears fashion, it evolves from being an object, a piece or a garment, and becomes movement, and evolves based on the wearer. This is both what makes fashion art, and extends beyond it.

The Costume Institute has consistently explored the body and fashion, but this exhibition had two specific objectives: the first is to draw on the artistic endeavours of the Met’s other curatorial departments, creating a specific link between the Costume Institute’s collections, and more traditional work such as sculpture, fine art and more. The connecting tissue is the body. The abstract body, the Disabled body, the corpulent body, the inscribed body, the anatomical body, the aging body, the vital body, and the mortal body are centred in the Costume Institute connecting to relevant artworks and objects from across the museum.

The second objective was to increase the representation of bodies, and in turn, mannequins at the Costume Institute. In 2023, curator Mellissa Huber’s exhibition, “Women Dressing Women” commissioned a mannequin to be made of model, Aariana Rose Philip, and acquired the mannequin made of my body from Proportion London, first created for the Body Beautiful exhibition at the National Museums of Scotland. 

The Mannequin

Back in 2018 the first mannequin of my body was made through a laborious casting process that took several days for the Body Beautiful exhibition. I had to stand still in one pose, as my body was covered in casting material to make a mould, to then make a mannequin. This is one of the first mannequins of a person with dwarfism to exist, and beyond Edinburgh it has also been on display in the V&A in London, the Met New York, and is about to be included in an exhibition at the V&A in Dundee. It has also acted as a canvas for young fashion designers creating adaptive collections, specifically for little people and those with dwarfism.

A key limitation of this mannequin was the inflexibility of the process and in turn, the pose. If a curator needed a mannequin to be positioned in a specific way, the flexibility and range was limited. For ‘Costume Art’, the Costume Institute sought to trial a different process that would give almost any option.

In August 2025, myself and Laia Cargol Martinez travelled to Brooklyn for ‘photogrammetry’ at New York Capture’s studio. Photogrammetry is the science of obtaining reliable information about physical objects and the environment through the process of recording, measuring and interpreting photographic images and patterns of electromagnetic radiant imagery. In practice, it was a cylindrical machine, with cameras placed three inches apart, covering the entire surface area. There was a small space to step into, and in the centre, every part of your body was in the centre of a lens. 

It was an intimidating process. Standing in my underwear and a pair of shoes that didn’t fit, I was encouraged by the team at the Costume Institute to move my body into positions that could be used in this exhibition or a future one. Seeing your body from all angles and perspectives is an act of empowerment, but starts with the need to unpick, challenge, and silence the perspective that with bodies, there is a norm, an ideal, a desirability. We are all the norm, the ideal, and desirable.

With the scans complete, the artist Frank Benson transformed the imagery into “digital clay” and the mannequins were made by Bonaveri in Italy. For this exhibition, each mannequin has a mirror in place of a face, so that visitors can see themselves in the bodies, the garments and the objects. 

The Disabled Body

For Tilting the Lens to consult and support the development of this section of the exhibition was a significant challenge. Our remit began with the title of this thematic section. We were specific and explicit in our naming and referencing, as while the etymology of the words disability and disabled often focus on absence, lacking, or deficiency, we were clear that in our naming of the Disabled Body, it is an exercise in Disability Pride, and an act of continued reclamation. In naming this section ‘Disabled Body’ we wanted Disabled people to feel welcome, to be invited, and to see themselves in the pieces and objectives, and to challenge the absences that continue to exist. 

One exhibition alone cannot include all perspectives, all bodies, or all Disabled bodies. That continued exclusion cannot be excused. Instead, it must create an urgency for museums and cultural spaces to continue to invest, expand, partner, and collaborate.   

In ‘Disabled Body’ fashion objects and garments are paired with artworks and objects from other curatorial departments across the Met. This pairing of work creates opportunity for new conversations. For example, the exhibition features a four inch marble statue of a person with dwarfism from 332-150 BCE, made close to 2,300 years ago. The sculpture signifies the cultural honor of dwarves in ancient Egyptian society. It is paired with my mannequin, and a Vivienne Westwood t-shirt from 1978, worn as a dress on a little person’s body. Standing in front of the two pieces together, it provokes questions and thoughts – why in one artistic medium is this body-type visible and valued, and in another, that visibility came later, and remains rare? Disabled bodies often had a much earlier presence and prevalence in other artforms, than in fashion. 

For ‘Disabled Body’, Tilting the Lens researched design archives for disability-related collections, and lived experiences of designers. Throughout the curatorial process, we suggested key pieces, pairings and ensured that this section of the exhibition was as broad as possible. We also supported the framing and context of this section, ensuring that themes of disability rights, disability pride, and Disability Justice were centered. This practice extended to the exhibition catalogue too. ‘Disabled Body’ also pairs artworks like Street, a photograph by Nolan Trowe. It’s an image taken from a lower height, looking up at the display screen of the inside of an elevator. The screen reads “Street”.

Street is paired with a pair of Levi jeans made in partnership with the Disabled designer, Helen Cookman, and a denim jumpsuit by Lou Dehrot and Louise Linderoth. The jeans are presented on mannequins of Antwan Tolliver and Sonia Vera, both wheelchair users.

This section of the exhibition also features the Disabled designer, Sugandha Gupta, and features mannequins modelled from the bodies of Disabled models, Aariana Rose Philip and Aimée Mullins. It showcases designers, painters and sculptural works that reference Deafness, Blindness, physical disabilities, neurodivergence, and mental illness. It also reveals the gaps that exist in fashion with designers identifying as Disabled, and pathways for Disabled fashion designers to succeed. 

For transparency, Tilting the Lens has a scholarship programme with Parsons School of Design – The Parsons Disabled Fashion Student Programme is a fully-funded scholarship to create a pipeline of Disabled fashion talent. We are about to enrol our third cohort of students.

It’s likely that some people who will visit Costume Art, will not have a lot of prior knowledge about disability. The purpose of including the Disabled Body in this exhibition is to communicate that disability is part of the human experience. We are all likely to experience disability and a Disabled body, particularly if we have the fortune to age. Historically, to be Disabled, was to be less than others, to be worthy of pity or shame. Costume Art rejects these ideas and instead, honours the beauty and validity of the Disabled body.

Training for Volunteer Guides

The Costume Art exhibition will be on display until January 2027. A typical Costume Institute exhibition attracts somewhere between 300,000 and 750,000 visitors (WWD 2025) and the volunteer guides support those visitors with brilliant, informative and engaging tours. The guides go through a number of training sessions in preparation for the exhibition opening. 

Curators will often host a session about the objects in the exhibition, providing context for the chronology, the background rationale and how some objects came to be acquired. To support the guides in feeling greater confidence in discussing ‘Disabled Body’, Tilting the Lens designed and hosted a virtual training program.

The training covered: 

• The models of disability; from eugenics to Disability Justice. With historical understanding of how and why disability is framed and considered, it helps us explain the current context and language. 
• Disability terminology and avoiding euphemisms. This section of the exhibition is proudly called ‘Disabled Body’, and we wanted to ensure that guides felt confident using disability-first language, and equipped to explain why, if necessary.
• An introduction to visual descriptions. The Met’s education and accessibility teams are excellent and they have put together a range of accessible programming and tours for Costume Art. But, if you’re a Blind person or someone with low vision, or if you’re a little person and at the back of a tour, brief, visual descriptions create a fairer experience as you move through the space.
• Supporting guests’ access needs. Using potential visitor profiles, we practiced scenarios where the guides’ role was to remove barriers to support visitors through the space. If someone needs to sit and rest, how do we direct them and support them to come back to the tour? If a person is over-stimulated, where can they go to de-compress and feel more regulated? If a visitor is lip-reading, how should the guide present the tour in the most accessible way? 

The training was recorded and will hopefully be a useful tool for guides throughout the exhibition run. We know that one training session cannot cover all topics, and for training to be most useful, it has to be followed by action and practice. We will continue to be available to the guides for the duration of the exhibition for queries, and to help solve barriers and challenges as they arise.

The Met Gala

I have been advocating for a more accessible Met Gala for almost 20 years. The Met Gala is a fundraiser, a party, and over 80 years, has evolved to become a litmus test for who and what is accepted and valued in fashion. That can be both a positive and a negative, but for many Disabled people, particularly those with physical disabilities, climbing the steps to the Met Gala has always been inaccessible. It has meant that very few physically Disabled people have attended the Met Gala. To the best of our knowledge, it’s Aimée Mullins, and me. I attended the Met Gala once before in 2019.

If Disabled talent can’t access the red carpet and have their photo taken, it’s unlikely fashion brands will sponsor their ticket and invite them to the Gala. It’s a self-fulfilling prophecy.

So, why can’t we make it accessible? 

Challenges in built environment access

The steps at the front of the Met Museum were designed by Richard Morris Hunt in 1975. They replaced a narrower staircase and today, they are 13.5 feet high and 154 feet long. In 1986, The Met was designated a National Historic Landmark. There are approximately 2,500 National Historic Landmarks in the US, and in theory, they can be altered to be accessible, but under the Americans with Disabilities Act, historic and protected buildings do not have to be compliant if: “the requirements for accessible routes (exterior and interior), ramps, entrances, or toilets would threaten or destroy the historic significance of the building or facility.” – US Access Board. 

I am not an architect, but I spend a lot of time with built environment experts, and at Tilting the Lens, moving beyond compliance in this space is one of our key services. I’ve always known that:

• Any attempt to ramp the steps, (i.e. level a section of the steps to include a ramp), would potentially meet the threshold for ADA non-compliance. But even if it didn’t, the incline of a 13.5 feet high ramp would be too steep and too dangerous for a wheelchair-user. 
• There is a handrail on either side of the far left and right of the steps. These rails are not robust enough to hold a stair lift and even if it were to work, this often isn’t a preferred solution. 
• My suggestion has always been to extend the tent. Typically at the Met Gala, the width of the tent spans two city blocks; 82nd to 84th street. It covers an entry point, check-in and the stairs up to the main entrance. Yet, the Met has a step-free entrance on 81st street. It’s clearly labelled and used by visitors daily. Why can the tent not be extended to include the 81st street step-free entrance? Yes, Disabled guests will still not be able to climb the steps, it will not be an equal experience, but they will be able to attend and participate in the red carpet moment. 

An accessible entrance

In November 2025, I received an email from the team at Vogue that said they were once again putting together a small host committee who reflect the exhibition theme, and that “Anna is hoping to include you”.

I must admit, I didn’t respond straight away. 

I knew that this role was an opportunity to leverage change. I couldn’t be there if there wasn’t meaningful access. This was another opportunity to ask for what I and other people need. If you’ve ever received an email from me, you’ll know that they’re usually lengthy, explanatory, optimistic and challenging. So I started drafting and redrafting:

“… I feel a sense of responsibility in what my presence at the Benefit, and even more, my inclusion in the Host Committee could represent. I’m very conscious that in 2019, great consideration of my accessibility needs were taken into account by Vogue, the Met, and Gucci. In the proceeding six years, I’ve invested my time and energy to ensure that change is not just for me. The stairs leading up to the Met is a constant and very visual reminder that for many Disabled people, the Met Gala is not for them. I would like to work with you to see if a solution can be found to ensure that Disabled people can attend, or at the very least, aspire to attend.

I understand that the Metropolitan Museum is in a protected, historic building and adding a ramp to the stairs is not feasible from both a legislative and finance perspective. But, perhaps there is a way to consider the adjacent step-free entrance as a secondary route, one that is as aesthetically pleasing, as engaging, and as welcoming as the stairs.” 

And so began many conversations. First with Vogue, and then with the Met. In February 2026, it was confirmed confidentially that the tent would be extended to include the step-free entrance at 81st Street. Disabled guests would arrive, queue for the red carpet, be interviewed by the live-stream, have their photographs taken on the flat surface and go left, rather than up the stairs, to the step-free entrance. Disabled guests would then use the elevator to reach the new fashion galleries and join all other guests. 

This is not a perfect solution, but it is progress. 

The Costume Institute’s permanent collection

One of Tilting the Lens’ principles is building legacy memory. We want change and the tools for change to not just live with one person, or one department in a company or organisation, but for it to be part of the fabric in how things function long term. This is important, because if that catalyst is taken away for any reason, everything stalls. That’s not the fault of the person, but a failure of the institution. Our work is about cementing that in every project that we do.

This project was no exception. 

The Costume Institute has a permanent collection of over 33,000 objects. As per the Costume Institute’s website, the permanent collection is open for research appointments by scholars, graduate students, doctoral students, and designers in relevant fields. In thinking about how we expand fashion academia, support doctoral students to study disability and design, and encourage designers and students to examine the ableism in design systems, the permanent collection must represent and provoke these ideas. I’m really proud to have donated two pieces from my wardrobe to the Costume Institute’s permanent collection for this very purpose.

I donated the Burberry trench coat and crown that was cut and photographed by Tim Walker for the cover of the Business of Fashion’s Age of Influence print issue in 2018. Along with a white cotton Alexander McQueen dress and leather belt that was photographed by Adama Jollah for British Vogue’s May 2023 Reframing Fashion issue, with Tilting the Lens as consulting editors. 

I know that for some, fashion is frivolous, expensive, and harmful. It can be all of those things, and it is also an institution that shapes culture, society, and is an extraordinary art form. It has an urgent responsibility to do better for people and the planet, but it is also an industry that we cannot escape from. We all wear clothes. 

Glossary

Disability Justice Model: this is a movement which focuses on examining disability and ableism as they relate to other forms of oppression and identity, centring rights and access. Sins Invalid18 lays out ten principles of Disability Justice including intersectionality, interdependence, and sustainability.

The Medical Model of Disability: this approach sees a disability as something ‘wrong’ or ‘impairing’ to be ‘fixed’ through medical treatment or intervention. This has led to segregated services and the ultimate exclusion of many Disabled people from society, rather than the addressing of societal, physical, or policy barriers.

Tilting the Lens team members' ZeroCon takeaways to shape the work ahead

With three of us on the ground, we were able to embrace the ZeroCon experience. By dividing our time, we could collectively attend a wide range of sessions, covering topics such as disability leadership, disability and human rights, the European Accessibility Act, disability and employment, and successful case studies led by Disabled people. This gave us a comprehensive perspective on the current state of the industry.

Emma Shaw’s reflection

The definition of disability differs in each country. In Italy, for example, if you have ADHD or epilepsy, you do not fit within the national definition of disability. This is not unique to Italy, but many countries have yet to expand their definitions of disability to include neurodivergence and non-apparent disabilities. What does this mean for global businesses where employees who work for the same company, but in different territories, have different access and rights to reasonable adjustments?

In a world defined by constant movement, where organisations operate across countries, it is not enough to rely on local legislation as the benchmark for inclusive employment. We need business-wide definitions of disability. Standardised, proactive systems that ensure Disabled employees can thrive, succeed and be promoted regardless of geography. If companies are global, their internal disability strategy should be too.

“A key discussion at ZeroCon was around self-ID, disclosure, KPIs, and percentages. I believe companies should look beyond these metrics to evaluate disability data, emphasising human experiences rather than just statistics. This involves tracking the number of reasonable adjustments or accommodations provided, their implementation, and evidence of effectiveness. What challenges were encountered? How many Disabled employees have been promoted? When considering self-ID and disclosure, it’s essential to understand the reasons behind these actions—employees need clarity on how and why their information is used. Such understanding helps us recognise genuine progress and meaningful change.” – Emma Shaw, Senior Consultant

Laia Cargol’s reflection

The European Accessibility Act was a significant topic throughout the week. The urgency it has triggered within in-scope businesses is tangible and necessary. But we have a responsibility to remind partners and clients that compliance alone will not build inclusive systems. There is so much more to achieve beyond a checklist.

Accessibility is most authentically achieved through co-design, and that must be led by Disabled people, it must create economic advantage, it must be accessible, multi-modal and intersectional by design, it must include consistent follow-up with the participants to share how the learning is being mitigated, and it must foster dignity, interdependence and psychological safety as outcomes.

“The European Accessibility Act is a catalyst for opening conversations and bringing organisations on the accessibility journey. However, it should be just the beginning of that journey. We should help organisations to see beyond legislation and create meaningful solutions with and for the Disabled community, not just ones that align with requirements.”- Laia Cargol Martinez, Consultant 

Sinéad Burke’s reflection

ZeroCon created a space for discussing new standards, technologies and solutions that are revolutionising the accessibility scene, some of which are being led by Disabled people. We need more of that. Disabled leaders cannot just be considered beneficiaries of solutions. Systems must be redesigned so that the Disabled community can be more than just consumers; they must be the thinkers and creators behind the solution-building process. That is what makes co-design successful and creates meaningful, long-term change.

A tangible example of this came from my fireside conversation with Microsoft’s Jenny Lay Flurrie about greater representation of Disabled people in AI-generated imagery. Earlier this year, Jenny was promoted from Chief Accessibility Officer to Microsoft’s Head of Trusted Technology. Together, we talked about the ways in which Disabled leaders create system change across the organisation and how businesses can move from not just measuring the spending power of Disabled people, to the value and innovation that is and can be created.

“When and how do we move from considering Disabled people as end users or consumers, and instead, create pathways, systems and pipelines of talent that support Disabled people to be successful, and to have a pathway to become leaders.” – Sinéad Burke, CEO and founder 

In-person relationships and building new connections

ZeroCon wasn’t just about the official agenda; it allowed us to meet so many people doing great things, turning our usual online connections into in-person collaborations. 

It gave us the opportunity to bring some of our clients with us to witness accessibility work in action, and for them to keep growing and evolving in their own inclusion journey.  

Beyond the sessions, ZeroCon created the space to celebrate the pride we take in our work and the community we build.

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.

The Notes & Signs project: A collaborative effort

The Notes & Signs project is a Music & Health Ireland (M&HI) initiative, delivered in collaboration with Audiovisability (AV), with financial support from Rethink Ireland. Tilting the Lens was delighted to provide logistical and facilitation support from 2023 to 2025.

The project was developed to explore and dismantle barriers that d/Deaf and hard-of-hearing audiences and musicians often face when engaging with music in schools, public spaces, and performance settings.

Goal: The primary aim was to work collaboratively to understand how Deaf students could have access to music education and to help venues support the d/Deaf community in experiencing live music more equitably and accessibly, whether as listeners, creators, or performers.

Exploration Areas: Through workshops, interviews, focus groups, and performances, the project explored how to:

• Deliver meaningful music experiences in Deaf education settings
• Build interpreter confidence and capacity in music contexts
• Promote accessible programming in schools and venues
• Empower d/Deaf children and their families to fully access music.

Evolution

The Notes & Signs project began in 2023 as a four-day enquiry-through-engagement. The project brought together key stakeholders, including families, teachers, musicians, Irish Sign Language (ISL) interpreters, and arts organisations, to understand real-world barriers and begin designing solutions.

Activities included: 

• ISL Interpreters Workshops, which involved musicians, dancers, and interpreters
• Family music concerts at the National Concert Hall
• Workshops in Deaf Schools 
• Feedback focus group with key stakeholders and funders to discuss outcomes, reflections, and consider ways forward. It was particularly concerning to discover the lack of availability of music education in Deaf Schools. 

The project continued in 2024 with further workshops with ISL interpreters, to consider ways to build comfort in the interpreter community to provide interpretation at music events. 

Evaluation and key outcomes

Resource Guides

The project culminated in two essential resource guides that serve as legacy outputs. The guides were written and produced by M&HI and Tilting the Lens.

The first guide is for venues on hosting accessible performances. It outlines practical steps and considerations for venues to make their performance events accessible, including:

• ISL interpretation for Deaf audiences for both small venues and stadium events
• Hearing loops
• Real-time Captioning and Surtitles
• Supporting Deaf musicians on stage
• Making ‘visually quiet’ spaces
• Making information accessible. 

The second guide focuses on inclusive music education. It outlines guidelines for visual learning, technology, and communication styles to support: 

• Music teachers working with Deaf or Hard of Hearing students
• Visiting musicians delivering inclusive workshops or performances in Deaf Schools
• Schools supporting visiting musicians in Deaf education settings

Validation

The documents’ relevance and accuracy were ensured by working with the d/Deaf community and working with ISL interpreters throughout 2023 and 2024.

Key Learnings and Identified Needs (from workshops) 

Feedback from participants in the ISL Workshops highlighted the need for:

• A “creative commonage”—an agreed lexicon of words for music in ISL in the Irish context.
• An app or resource to help interpreters understand the marks, notations, and individual words that appear on a musical score.
• More information in advance of a musical performance to help interpreters understand the story or elements being portrayed.

We hope you consider downloading the guides as a helpful resource in your work. 

Download the Resource Guides