Designing for complex human needs, including physical, cognitive and neurodevelopmental conditions, is a practice that has developed significantly in the past decade. While it is common for us, as architects, to employ empathy to enhance the physical accessibility of built outcomes, the design of spaces that minimize challenges for neurodivergence, and that focus on wellbeing and enablement, is still a relatively young field.
This article highlights several residential case studies in which a clear empathic presence has guided the design response. The projects are diverse in their geographic location, decade of construction and formal outcomes, but they share a deep sensitivity to the needs of the client and a profound – and often unexpected – design realization. These projects prompt us to ask new questions: How does the client relate to their own lived experience? How do we find a balance between designing for the complexities of the condition, and the needs and values of the person beyond their condition? What is the relationship between the client’s needs and the aesthetic value of a project? How can a lens of care shape the architectural process and outcomes?
In the Hobart suburb of Blackmans Bay is a family home that appears, from first impressions, incongruent with the needs of individuals living with progressive failing mobility. Its complex multi-levelled plan, steep site and predominant use of high-maintenance materials seem unsuited to the standard interpretation of “aging in place.”
I speak to Anna and Ross, directors of Gilby and Brewin Architecture, about Gilby House. Anna’s father Paul and mother Meg live here, and Ross, Anna and their young son have been living with them for the duration of the COVID pandemic. Originally designed by Paul (an architect himself) in the 1970s, the dwelling has been through multiple additions and alterations since. Anna, Ross and Paul co-designed the most recent renovation; carried out only a few years ago, it has generated the largest impact.
The most intriguing aspect of this project is that Paul and Meg had both been diagnosed with a degenerative illness before the original design and construction was undertaken – Paul suffered a spinal injury at a young age and Meg a deteriorating muscular condition. Anna calmly explains that one of the reasons this house is so fun, vibrant, active and messy is her parents’ “stubbornness”: their decision not to be defined by these disabilities, but to instead harness their youthful excitement and creative endeavours.
In his book Being Mortal, US surgeon and writer Atul Gawande discusses the importance of finding a balance between risk and reward, particularly in relation to healthcare environments. 1 Gawande explains that risk often presents an individual with a sense of self because it offers them a choice. He describes how the removal of this real or perceived risk can reduce life’s enjoyment, emptying us of meaning and purpose.
As Paul and Meg are now both in motorized wheelchairs, the most recent renovation made minor, but dramatic, shifts in the way the ground floor plan was utilized. The room to the south-west corner, closest to the (now) kitchen became the primary bedroom, and a storage area (previously accessed from the hallway) was repurposed as the bathroom/ensuite. The kitchen became linear, allowing seamless, free movement to occur between the bedroom and the main dining/living areas.
Ross explains that positioning the main bedroom so close to the kitchen seemed an unnatural decision at the time, challenging innate architectural instincts. However, seeing how much connection, inclusion and psychological (along with physical and aural) empowerment this small decision has brought to Paul and Meg has cemented it as the correct one. Paul and Meg now spend longer periods resting in bed or sitting in a chair, but the redesign means that their ability to communicate with each other, and with visitors and the rest of the household, is not impaired.
The most recent modernization works hard, rejuvenating the relationship between the interior and the existing landscape and vistas, while also enabling Meg and Paul to be more independent in terms of mobility, and to remain connected to the activity occurring in the rest of the house. This highly considered adjustment “saved the house, really – it allowed [Paul and Meg] to stay at home,” Anna shares.
Peakaboo House is a renovation and addition in Brisbane by Alcorn Middleton. The multigenerational home was designed by Chloe Middleton and her fiancé Joel Alcorn, who live there with Chloe’s parents, Mary Jane and Robert. Robert was diagnosed with dementia when construction commenced and, since the project’s completion in 2017, the family has been discovering some unexpected but remarkable design outcomes. These retrospective insights are continuing to evolve at the same time as the family is coming to terms with new realities and complex living arrangements.
Although significantly renovated, the original family home provides a pivot point around which the carefully planned addition wraps. This creates a series of clear thoroughfares that delineate new from old, communal from semi-private and private. Established as “breezeways” to encourage multi-directional airflow, these thoroughfares have now taken on a much greater meaning. Chloe’s parents have lived on this property for more than 30 years and Chloe describes how her father used to know the local area like the back of his hand. “He would walk me to school every day and would pride himself on his detailed knowledge and memory of the local streets,” she recalls. With this ability now dissipating, the breezeways act as entry and exit points, allowing Robert to move about freely. Although his memory loss means that he can no longer stroll the neighbourhood as he once did, the thoroughfares – unexpectedly – have created an alternative circuit for him to enjoy. “The project now acts as a village,” says Chloe.
Despite the inevitable emotional challenges, Chloe, Joel and Mary Jane have begun to recognize this design consequence as a positive and an enabler. The breezeways support the repetitive routine that Robert finds pleasant, providing him with a level of autonomy and agency. “The way he uses the new space is based on the way his mind is now working,” Chloe acknowledges.
In Contented Dementia, British psychologist and writer Oliver James discusses a series of unique approaches to caring for those living with dementia. 2 Through incredibly compassionate case studies, James offers techniques and insights to ease emotional distress and improve quality of life for those living with the condition. He articulates ways of working with positive emotions and self-efficacy to form continued life meaning through manifested validation. This technique is embodied in a clear, though unanticipated, architectural form at Peakaboo House: breezeways that enable Robert to enjoy his daily routine.
The breezeway is also critical to James Russell Architect’s Mitchell Street House, a renovated Queenslander in the Brisbane suburb of West End. Completed in 2013, the renovation was home to Louise and Andrew and their children Trixie and Fred until 2016.
Fred, who was around four at the time of the project’s inception, lives with autism and requires a high level of continual care. As Louise explains, “At one point of Fred’s ‘home therapy program’ (spanning more than four years), there would be up to eight therapists entering the home each day, on a rolling schedule of up to 65 hours per week.” Carers primarily came into the home through the main entry, following the direct hallway to the kitchen and dining areas. The lounge space was also easily accessible from both the hallway and the dining area. To the west, where the private program resides, sliding doors allowed an intricacy of controlled family movement between bedrooms, bathroom, laundry, storage and outdoor areas without the need to access the areas occupied by carers.
An intentional but unexpectedly impactful component of the design, this two-layer movement system allowed external carers to come and go from the home without disturbing the family’s critical sense of privacy and connectedness. Louise reflects that it felt “secure without feeling locked in,” and that it was important that the home not be “entirely dedicated to care.”
James, the architect, shares that his personal experience with a family member with autism gave him clarity on the hierarchy of needs and components that were non-negotiable in the design of Mitchell Street House.
Each of these architectural responses has enhanced enablement for diverse and specific human needs. In some cases, the occupants were empowered to contribute to the balance between program necessity and personal desires and needs; in others, this balance has been discovered over time. Each design reflects the occupant’s desire for joy, rather than an outcome that is purely defined by their physical or mental condition. For some, their unique routine or ritual requires a physical and obvious presence/reminder, while for others, these practicalities are subtly woven into the fabric of a material, a detail, or a carefully curated spatial layout. In all cases, minor design decisions have led to unexpected yet powerful outcomes, providing important learnings for future work in this space.
In each of these projects, the architect has grappled with significant moral and ethical questions: Should our obligations extend beyond what we might usually consider an architect’s role? Are we professionally equipped to manage projects that challenge us not only logically but emotionally? In my design work and PhD research, I have been investigating how a lens of care can contribute to this process.
My practice, BLOXAS, has designed House for Taylor in collaboration with a young woman living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a neurological disorder affecting the brain, muscles, digestion, immune and cardiac systems. For several years, Taylor has been largely confined to a small bedroom, with minimal mobility and/or connection to the external environment. House for Taylor will be built to embrace flexibility and future adaptability, in response to the uncertainty and instability of the complex condition itself. The design focuses on Taylor’s movement and energy consumption, and the critical details required for a functional, purposeful and delightful milieu.
House for Taylor is one of three critical case studies in which my PhD research is grounded. Each of these projects has required incredible vulnerability from both the user/client and the architect. Through this vulnerability, opportunities for architectural self-reflection can be leveraged and positively integrated into the iterative process of design. This reflexive practice offers architects the opportunity for a recalibrated and re-articulated method of enquiry by which to appreciate their position, role and bias through complex concepts such as agency, ableism and independence.
While there is still much to be learned about bringing empathy and a lens of care to architecture, I am encouraged by the wise words of neurologist Oliver Sacks: “To restore the human subject at the centre – the suffering, afflicted, fighting, human subject – we must deepen a case history to a narrative or tale; only then do we have a ‘who’ as well as a ‘what’, a real person …”. 3