Gillian Burgis Smith details how she became an architect, overcoming some outdated industry mindsets and major health obstacles; and how she has positively harnessed her own experience to create inclusive environments for others

What made you want to become an architect? 

When I left school at 16 I didn’t know that architecture was an option; local government was considered a stable and secure job, and after working in Housing, Finance and Trading Standards I was moved to the Architects Department. I saw architectural trainees on drawing boards and knew that was my calling. Years later I found that my birth parents were in the architecture and design field. I love architecture, arts, culture and design and their impact on people, the environment and life experience. 

After being told “you can’t do that, you’re a woman,” I enrolled in an evening class for an ONC in Building Studies, which was enough to be an architectural technician. But to do a degree I was advised to do a foundation course at North London Poly and was admitted for a four year part-time BA (Hons) at Greenwich University. I did my Part 2 at a small private practice where I gained a lot of experience with materials and interiors.

Greenwich was great, I was one of six day release students that went straight through from beginning to end together and we formed a strong bond. I recently discovered that I was one of only 3% of women that graduated in architecture from Greenwich University in 1994.

How did suffering two strokes impact your career?

Professionally it was profound; it woke me up to how lifestyle, health and happiness within my work environment were of paramount importance. It also helped direct me to concentrate more on individuals’ diverse needs, for example to focus on people who had a different sensory response to environments. I was suffering from aphasia and having trouble with my balance, vestibular sense and topographical disorientation. 

I was mainly working in corporate interiors and decided to conduct some research, as I was conscious that – for many architects and designers – design for people with visible and non-visible disabilities had mostly been a tick-box exercise. I began one-to-one research interviews with people diagnosed and/or identified as neurodivergent or neurodegenerative and working in creative fields, as I wanted to discover how they adapted their work processes during the pandemic and beyond, to help create a framework for continued creative effectiveness across remote and in person work environments.

One of the main takeaways was that while the way that we interact with our environment varies, there are some similar patterns, and we need to consider physical, sensory and cognitive factors. Sensory reactivity and processing differences are common across neurodivergent and neurodegenerative groups and neurotypical individuals from time to time – not all disability is permanent.

This research and work helped me to refocus. I changed jobs eight months after my second stroke and became self-employed, which gave me the ability to work how I needed to work. I am a consultant to Built for Marketing, an organisation that shares the same passion and values and am also co-founder of Citizens with Experience, using collective lived experience to create inclusive and universal design solutions. 

How did you cope with life after your brain tumour diagnosis?

I believe in being pragmatic, and that there is a purpose for everything. Without the diagnosis I believe that I would have continued in architecture and management feeling unfulfilled, unhappy and under undue stress both in the office and at home. In this way, it has strangely been beneficial to me, my home life and my work!

When diagnosed in 2019 I was looking after my father who had been diagnosed with Motor Neurone Disease (MND) and my mother who had vascular dementia. So the change in working life enabled me to work around my role as a family carer. My absence seizures and mental paralysis are concerning but I have become comfortable with disclosing my condition, and my husband is often by my side throughout the day. I have become accustomed to the triggers and symptoms before the condition fully presents and have learnt how to mitigate and take appropriate action, i.e. rest periods to minimise the impact. 

What are the positives of your condition as a designer of inclusive environments?

The combination of having a non-visible disability and over 30 years experience as a chartered architect with an extensive network gives me a great opportunity to effect change in not only design, but also in the way other people think with regard to inclusion, diversity, equity and accessibility. All individuals are neurodiverse so if we can create neuro-inclusive environments we are making lives better for everyone. 

Design thinking that is truly inclusive focuses on the ‘outliers’ (i.e. those outside the design process itself), enabling as many people as possible to experience products, environments, and experiences safely and independently while preserving their dignity. It is not just about getting in and out of a space safely, it’s also about being able to function and save energy; including physical energy. 

I have chronic pain and suffer from osteospondylitis, and the degenerative nerve damage has left me partially paralysed from my neck to elbow on my left side. I think more every day about conserving my energy. As a designer and inclusive design consultant I see my own experience and that of my colleagues at the International Forum of Inclusion Practitioners as being a huge benefit giving diversity of thought and experience. 

There is more awareness now, whether from more individuals going through mainstream education, an increase in empathy since Covid, and late ND diagnosis, and other factors; we live in a diverse society. Previously, while I had tried to engage with different stakeholders and user groups, it was still very limited. 

How did your research lead you into founding your practice?

Every individual is unique; ‘if you’ve met one person with autism you’ve met one person with autism.’ A common theme from my research however was people describing “sensory processing differences,” and their sense of agency. Many interviewees spoke about auditory factors and ‘mood,’; acoustics, music, speech and environmental sounds. For example, hearing the hum of the air conditioning, a conversation between two people in the same space, and the ping of a microwave with the same intensity. 

Other interviewees spoke about visual perception and noise (including colour, contrast, signage, wayfinding, and lighting. Other factors were olfactory, and around touch, including a varying sense of equilibrium. All the neurodiverse individuals we have interviewed expressed a desire to come back to the office environment post-pandemic.

I realised that I was in a unique position with my own lived experience and associations; hence, I founded Strawberry Leopard and now consult across all sectors. The industry needs to continue to lift the barriers to entry, disclosure, recognition, and promotion, through listening to different perspectives, ideas, communication and raising awareness. Inclusive environments are needed that go beyond accessibility to prevent exclusion and discomfort, avoiding the need for neurodivergent individuals with non-visible disabilities to disclose them.

My experience has made me realise that there was a lack of awareness among the architectural design community about inclusive design, and a lack of tools and frameworks for fostering it. Just being aware of my own ‘cones of bias’ and ‘cones of experience’ led me to want to explore knowledge and reduce points of exclusion. 

As a consultancy, Strawberry Leopard works collaboratively with different communities and organisations to increase diversity and inclusion. When I worked within large global architectural organisations it was within fixed structures, closed to sharing information based on competitive awareness. I now share to learn, and also lead co-ability special interest groups,, where everyone is ‘open book.’ 

As organisations we move at the speed of trust. We have a lot of outreaches from students and architects at the beginning of their careers that want to understand more about accessible and inclusive buildings and experiences. We practise ‘tension-based innovation’ where the differences and diversity illuminate issues and allow open innovation without harm to anyone. We do not chase perfection, nor the minimum viable product, but look towards the minimum valuable product enabling the optimal result for all.

Any recent projects or work you are particularly proud of?

There is huge satisfaction knowing you have reduced the mismatch between how a building or product ‘should be’ used and a more user-centred, co-design approach that embraces inclusive design. I have had amazing feedback from my role as RIBA Core CPD speaker for Inclusive Environments 2023 – from architects that have been practising over 30 years, to architects entering the profession saying they learnt something new and that they have been inspired. 

My greatest and most humbling achievement is having the opportunity to attend the Global Inclusive Schools’ Forum at the UNESCO HQ in Paris in March this year. This is an ongoing project working towards the 2030 agenda for sustainable development that provides a unique opportunity to build more inclusive just and fair societies. We know that inclusion is the key to building peace, bridging divides and empowering all citizens to contribute meaningfully to society.

I was a judge in the first Global Inclusion Awards and asked to create a special interest group, within the IFIP for Architecture and Design going forward. In total, 149 organisations and individuals were recognised and celebrated for realising inclusion across eight categories from 39 countries across the globe.

How has the industry pursued design for neurodiversity?

I do believe that even though neurodiversity is now a mainstream subject, design is not yet as inclusive as it could be. When we consider designing for the disabled, we should all be aware that nearly 13 million disabled people in the UK do not use a wheelchair; this includes neurodivergent and neurodegenerative groups. 

The RIBA have created two overlays to the RIBA Plan of Work – the Inclusive Design Overlay – to embed inclusive design through Inclusive Design Consultants and champions and the Engagement Overlay. The well-researched WELL Building Institute Equity rating empowers organisations to take action. The British Standards Institute has produced new guidance (PAS 6463: 2022), the first building design standard produced by a national standards body to specifically address the needs of people who are neurodivergent and have sensory processing differences. Its launch marks a shift in thinking about non-visible disabilities in terms of physical environments, experiences and neurological safety and awareness. 

What is your next big challenge? 

I would like to learn more about other methodologies and platforms such as Extended Realities (XR) and Augmented Realities (AR) to help identify challenges and opportunities and create more inclusive environments and experiences. Also, to look towards neuroscience and behaviourism to bridge the gaps. I often said if I wasn’t an architect, I’d be a psychologist. 

Architects and designers have tended to rely on visual representation of design and create the built environment, with other senses being secondary. At Strawberry Leopard and Citizens with Experience we put body and mind at the centre of design.

What are the big changes needed for better environments for degenerative neurodiversity?

We need both a top-down and bottom-up approach. Government legislation, planning regulations, Building Regulations, and recognition from the RIBA and other governing bodies. All of which is starting to happen. 

Additionally, design student course work should recognise the need for design for neurodiversity. Companies need to measure and track their diversity, equity, inclusion, and accessibility objectives. Product marketing material needs to be informative, inclusive, and accessible to all.

Being open to new ideas, not just ‘this is the way we have always done it’ needs to combine with encouraging open collaboration, listening to outliers, creating open cultures, and continuing to reflect the real world in all sectors, using design thinking tools. 

Gillian Burgis Smith is founder of design consultancy Strawberry Leopard, co-founder of Citizens with Experience and consultant to Built for Marketing