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VIEWS
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
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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,
UNESCO HQ, Paris for the Salamanca 30 year celebration
For many architects and designers, designing for people with visible and non-visible disabilities had mostly been a tick box exercise
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.’
ADF APRIL 2024
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