The rise of homeworking, which has been embraced by many, has been a double-edged sword for those who suffer from chronic pain conditions. While it may have reduced the need for arduous commuting, many are now spending more time in homes that are ill-suited to their conditions.
How much architecture and design can make life easier is a vital question, and a complex one. One chronic pain sufferer rarely displays identical symptoms to another.
Chronic pain is defined by the UK’s NHS as pain that carries on for longer than three months despite initial injury or inflammation having passed. Sufferers can be susceptible to their environment not just for physical reasons but for how it makes them feel.
Research from the Centre for Conscious Design, an international think-tank, shows responses to design can be deep-rooted, with pain sufferers vulnerable, for instance, to light, the colour of a wall or simply the way a room is laid out.
“If I have to navigate a chaotic space, I get exhausted,” says AG Parker, a novelist and disability activist who has Ehlers-Danlos syndrome, an inherited condition that causes bones to dislocate.
A homeowner or resident can become disabled or a chronic pain sufferer at any stage of their life, Parker adds, and homes should be built with this in mind. Cowan, a Sussex-based architecture practice, works with users on their homes. Architects should design with those who experience disability or pain, not just for them, says Julia Hockin, an architect at Cowan. The result, she adds, should always be beautiful.
One project designed by Cowan Architects is a holiday home in Cornwall, developed in consultation with a client who wanted it to be suitable for people with a range of assisted needs. It includes mechanisms such as pull-down shelves and adjustable kitchen worktops, as well as soothing colours, large windows for natural light and views, and underfloor heating for back pain sufferers who may need to lie on the floor.
Such projects are rare, however. Several architectural practices, in answer to interview requests from the FT, said pain was not something they thought about in their building designs. Instead, most residents adapt by trial and error.
Dr Federico Febraro, a consultant at the London Pain Clinic, says people in pain can help their bodies by increasing activities that “feel good” in the home. For example, taking a slow, adaptive approach to gardening, even if it provokes uncomfortable twinges, can distract a sufferer from being “stuck inside your pain”, he says.
For Parker, who uses the pronoun “they”, sailing has a positive effect. So when rearranging their ground-floor flat, they considered the layout of a boat. “I just thought a boat is this perfect linear, contained environment . . . where everything has its place and is within reach,” they say.
For Lucy, a former singer who now suffers from a painful vocal cord condition, and preferred not to give her surname, hints of the Mediterranean are helpful. Tiled floors, high ceilings and clean lines are “magically acoustic”, she says: “The voice can just ping about effortlessly.”
When she lived in carpeted spaces, she found that fabric absorbed sound and she had to make more effort to lift her voice. She now plans to free up more space in her home and have “less furniture, less muffly stuff”.
“Open-plan spaces can lead to sensory overload though,” says Amy Francis-Smith, an architect who specialises in accessibility and has a chronic pain condition herself. She recommends creating a quiet area with soft furnishings and light dimmers or blackout blinds to help reduce headaches. For chronic fatigue sufferers, such a room provides somewhere to flop without feeling bedridden.
Lessons in home design are being learnt from palliative care centres and clinics where pain-alleviating design excels. Horatio’s Garden, a UK charity that develops gardens in NHS spinal injury centres, aims to aid the recovery of patients who have suffered life-changing injuries.
The work involves landscape designers, neuroscience researchers from Oxford university and hospital staff, in consultation with patients and their families. Close attention is paid to minutiae such as smooth, seamless flooring, because even tiny jolts to a wheelchair can, for the user, cause sharp stabs of pain.
The project constructs its gardens so people aren’t reminded of their pain, says Olivia Chapple, co-founder of Horatio’s Garden. Like Hockin, she insists that “accessible architecture should be beautiful”, not clunky or clinical looking.
The warm pods in the garden at Salisbury hospital embody this principle, where details such as accessible handles remain graceful. Aishwarya Narayana, a researcher in neuroaesthetics at the Centre for Conscious Design, says such elements provide “the type of space people need in that moment to heal”.
But during the pandemic and its restrictions, patients have been able to spend less time in rehabilitation centres. As a result, there’s pressure on social care and occupational health workers to adapt people’s homes. Often when people leave a care unit, they find “their home has turned against them”, says Narayana.
Disability awareness consultant and full-time wheelchair user Andrew Gurza says lockdown threw into sharp relief “how cramped and badly adapted my apartment was for my needs”. While friends have since helped him paint and personalise his home, there are parts that he still can’t use — cupboards that he is unable to open independently, for example.
The experience of any two disabilities or chronic pain sufferers will not be the same, and bespoke design comes at a price. Fitting out a flat with necessary features can cost upwards of £10,000-£15,000, says Francis-Smith, while many chronic pain conditions do not meet the criteria for council-funded adaptations.
Francis-Smith lists low-cost technologies that can help: voice-activated home hubs and smart plugs, for example, allow sufferers to save their physical energy and cost less than £300.
She says accessible home features tend to be considered “far down in the design process, by which time it’s too late”. She is part of the Habinteg Housing Association #ForAccessibleHousing campaign. According to Habinteg, only 7 per cent of homes in England offer basic accessibility, let alone combine accessibility with a beautiful living environment. From design student level up, she says, “we need to develop these skills”.
In the UK, the basic requirements of accessibility are met by Part M of the government’s building regulations but, says Narayana, in general this involves “copy-pasting and adding space and calling that assisted living”. As Gurza says: “We need more than just space, ramps and handlebars.”