Design Thinking for the Greater Good

by Jeanne Liedtka

  At the end of the day, Ignite certainly seems to have lived up to its name, helping the Whiteriver team to develop the creative confidence that successfully democratizing innovation will require. Marliza’s own words capture that best:

  Not being in Washington, not part of a tech environment or an innovative environment, it was intimidating. We’re babies, and others are so much more sophisticated, more educated. Were we going to be too far behind them? It was scary. But if that e-mail hadn’t come to me, I would have never known that I had the ability to make this happen, that I could step outside our little agency…I think my experience with Ignite will definitely help me to be fearless in “disrupting” the status quo and looking for new and innovative ways to find solutions. I also think it gave me confidence to be willing to propose anything and everything without concerning myself with rejection of any new idea.

  CHAPTER FOUR

  Including New Voices at the Kingwood Trust

  THE CHALLENGE TO THE GREATER GOOD

  One prominent theme in these stories is the inclusion of more voices—particularly those excluded in the past—in innovation conversations. Traditionally, experts in fields such as health care, education, and government have designed for people in need. How can they design with them, instead? And what if the stakeholders we want to include are reluctant or have difficulty participating in typical ways?

  DESIGN THINKING’S CONTRIBUTION

  Design thinking provides opportunities to invite those previously excluded into innovation conversations, even those who have difficulty communicating their needs. In the United Kingdom, the Kingwood Trust is committed to such inclusion, reworking traditional design tools to accomplish it: inviting the adults with autism they support, along with their families and support staff, into the design of their homes, outdoor spaces, and daily activities of life. Beginning by reframing the nature of the opportunity, Kingwood has developed creative ways to allow even those who don’t use written or spoken language to participate in creating the designs that impact their lives.

  In the world of Innovation I, “experts” do the designing. Especially when the stakeholders involved are disadvantaged—poor, ill, or differently abled—the expert’s voice dominates the innovation conversation, often silencing other voices. In Innovation II, we search for value-creating ideas by inviting the stakeholders into the conversation. Design thinking has explicit processes embedded within the four questions to make this inclusion a reality. In the What is phase, we go deep, using ethnographic tools to try to understand what the world looks like and how it is experienced from the stakeholders’ perspectives. In What if, the stakeholders participate with us in idea generation. In What wows, we create prototypes that make the new concepts vivid and tangible for them. In What works, we seek their feedback and incorporate it into our evolving design.

  But imagine a setting in which the people whose needs you are trying to meet are unable to communicate with you in the ways you are accustomed to. Engagement might seem difficult to achieve. The story of how the Kingwood Trust engaged the autistic people they support represents some of the most creative and impressive inclusion strategies that we have seen anywhere.

  The Kingwood story starts with a determined mother in the United Kingdom, Dame Stephanie Shirley, who decided to ask a different question. Her son, Giles, was diagnosed with autism spectrum disorder, believed to affect about i percent of the world’s population. As Giles grew to adulthood, he needed care that his parents alone could not provide. This lack of facilities for adults with autism is a global problem. An opinion piece in the Washington Post recently noted:

  One of the most urgent…needs is more services for adults with autism. Such adults are too often treated as if they are invisible. It’s the children with autism who tug at our heartstrings…But those kids grow up…Many of them could live with a greater degree of independence if there were more funding for affordable housing tailored to their needs. Many could have the satisfaction of a productive job if given the necessary training and support.

  With no alternative available at the time in the United Kingdom, Giles’s parents were forced to hospitalize him in an institution, where, in Stephanie’s own words, “there were probably zoos in Britain where the quality of the inmates’ lives was a higher policy priority.” She saw that caregivers had given up all hope of helping patients to lead better lives. Instead, she said, “they were kept alive and physically safe but had been deprived of most of their human rights.” But Stephanie saw an opportunity that others did not, and in 1994 she founded the Kingwood Trust, a UK charity dedicated to pioneering best practices to help people with autism and Asperger’s syndrome live full and active lives.

  From its founding, Kingwood chose to deliberately step away from focusing only on safety and security and to commit to a higher bar—designing with a goal of growth and development. As Colum Lowe, their partner at BEING, a design consultancy, explained to us: “Everything we do is about giving people that Kingwood supports opportunities to express themselves, to develop their interests, and to challenge themselves in a controlled way. That changes everything.”

  Fast-forward to today, when Kingwood has incorporated design thinking into the core of their strategy. Over the past seven years, they have identified for redesign a series of areas that touch the lives of people with autism—beginning with the design of independent housing, moving on to the design of outdoor green spaces, and then addressing personal tasks of daily living, such as making a sandwich or vacuuming a carpet. Despite the challenge of developing a deep understanding of people who often have limited speech and additional learning disabilities, Kingwood has invited these autistic people, their support staff, and their families into the design process as active participants. In doing so, King-wood has succeeded in developing new design standards and inclusion practices that have become influential throughout the United Kingdom. The cumulative impact of these initiatives has dramatically improved the ability of those they support to lead more independent lives and, in Kingwood’s own words, has helped people with autism “live the lives they choose.”

  Their design thinking journey began in 2009, when Kingwood CEO Sue Osborn contacted Colum Lowe at BEING. The Kingwood Trust wanted to build new accommodations for its residents but could find no guidelines for designing for adults with autism. Colum was an expert in the design of health care facilities and was commissioned to carry out a review and produce a proposal outlining how Kingwood could develop guidance for the design of residential housing for adults with autism. Colum’s proposal included commissioning the Helen Hamlyn Centre for Design at the Royal College of Art to carry out a yearlong project to conduct the research, with input from renowned experts in the worlds of dementia and autism, and to produce the guidance.

  REFRAMING THE QUESTION

  Regardless of whether we frame our starting point for designing as a question, a challenge, or a problem, successful design really begins with giving careful thought to the space that we want to explore. Our initial framing of the question shapes the boundaries and direction of the entire innovation journey, as is evident in the Kingwood story. Stephanie Shirley, a loving mother, asked a different question than the experts of the time were asking. She was concerned with a much broader, more ambitious challenge than just keeping her son physically safe. Her aspiration was for him to lead as full and active a life as possible. That new framing of the question opened up a completely different innovation conversation.

  Their initial research, conducted by Andrew Brand, suggested four themes to guide the development of the new environments: Growth and Development, Triggers, Robustness, and Support Tools. Growth and Development meant encouraging people with autism to explore their environment in ways that built their confidence and providing spaces for developing interests and skills. Triggers focused on reducing stimuli that might negatively impact the residents, while providing spaces that would meet their sensory needs. Robustness reflected the provision of a safe environm
ent for residents and staff and an environment tolerant of things being used for unintended purposes. Support Tools had a goal of helping staff to allow them to provide their best care.

  These themes guided the design of common areas as well as personal spaces. Calming neutral colors were used in common areas, while residents could choose their own preferred colors for private bedrooms. Common spaces (spaces with no prescribed function) were used for a variety of purposes, including dancing and computer work. Sleeping spaces had inset lighting that could be a standard, neutral light color or a range of colors, depending on personal preferences. Sensory preferences guided projects designed to engender growth and development. Underfloor heating and plumbing were used to provide a safe and secure environment.

  Shortly thereafter, in 2010, textile designer Katie Gaudion, with a passion both for understanding how people engage with the sensory qualities of the environment and for enriching the lives of people with neurodevelopmental conditions, joined the team at the Helen Hamlyn Centre. Katie brought Kingwood’s developmental aspiration to life by putting aside the triad of impairments that often dominates the autism discussion: impairment in social interaction and communication, understanding, and imagination. Instead, she developed a new design framework called the Triad of Strengths, which views autism in a positive and enabling light.

  With the Triad of Strengths, Katie sought to maximize the positive impact of sensory preferences, special interests, and action capabilities. As before, this reframing of the opportunity itself—moving from prevention of bad events to active encouragement of good ones—set the stage for innovation. With this focus as their guide, the team moved beyond merely removing the “pain points” we talk so much about in design. Instead, they set out to conduct studies aimed at exploring an individual’s sensory preferences, special interests, and capabilities, to create points of joy and learning and development.

  In the early part of the design thinking process, it can be challenging to engage a broader and more diverse group in the design conversation in a way that facilitates the kind of deep discovery and insight generation required for innovation, and the Kingwood design team faced multiple challenges as they began their research. One challenge was that the researchers could not always ask the autistic adults at Kingwood about their experiences, needs, or preferences. Though they knew that many people with autism are highly sensitive to sensory input such as light, sound, and smell, there was little detailed research on how these sensitivities could be accommodated in the design process. Another research challenge related to the autistic participants’ sensitivity to their environment—the very presence of a researcher in their midst often disrupted their lives.

  As we learned more about the Kingwood story—and eventually read Katie’s PhD dissertation, which chronicled the design team’s approach and the intensive involvement of key stakeholders in every aspect of the process—the team’s data gathering and insight identification in the What is phase, idea generation in the What if phase, and testing in What wows and What works stood out to us as critical. Accomplishing these steps required the team to adapt existing research tools to their stakeholders’ unique ways of experiencing the world. In particular, their extensive use of the design tool visualization—in many forms, ranging from prototyping to storyboarding—not merely in the testing process but also as an important part of the discovery phase, was critical in helping to surface insights that the autistic participants, support staff, and family members might not have recognized or articulated otherwise.

  VISUALIZATION

  The use of visualization is one of the cornerstones of the design thinking approach. Many of us associate visualization with drawing, but it is really about making our thoughts visible in ways that render them more accessible to others. At its simplest level, visualization is about creating images, stepping away from our reliance on spoken language and text. At a deeper level, it is about seeing with our mind’s eye—conjuring up vivid depictions of what we are thinking in terms that are clear and compelling to others.

  Exploring What is

  Even though it is clearly understood that the physical environment has an impact on people, existing research has not focused on the relationship between people with autism and their environment. However, the team found that the relationship of some autistic people with items in the environment might be very different, even with respect to everyday items, such as toasters and washing machines. A washing machine might provide pleasure to a person observing its spinning motion, and a toaster might trigger anxiety because of the toast popping up unexpectedly. What may seem like destructive behavior, such as ripping pages in a magazine or rubbing against a wall, might actually provide pleasure.

  With this realization in mind, Katie conducted studies over a period of several years: one for the design of the outdoor space, the other for the everyday activities project. For both projects, Katie created a range of sensory and creative activities and used the tools of mirroring interests, participatory observation, and shadowing as well as traditional interviews with support staff and family. Wherever and however possible, the people that Kingwood supports, all of whom were adults with autism, were invited to participate in the research.

  In the design of the outdoor garden space, for example, Katie organized a two-hour garden activity, complete with furniture, props, and activities designed to incorporate sensory experiences based on the autistic participants’ interests. Props were designed to reflect sensory properties (for example, touch, sound, sight, smell, or movement) and were used to gain insights about the sensory preferences and action capabilities of the residents. For example, one participant, Pete, enjoyed props that offered resistance through stretching and pulling. This resulted in the design of a prop called fiddle bricks (think of large, soft, malleable Lego pieces), which Pete appeared to very much enjoy during the two-hour garden activity. A trampoline was added for those who enjoyed the movement of jumping.

  As the garden was being designed, areas for different sensory experiences were added. For example, one individual might enjoy seeing bubbles, smelling earthy and floral scents, walking barefoot, running, jumping, or touching sand. As Katie explained, “A person’s interests can help inform the choice of specific features and activities, which greatly increases the likelihood of active engagement with the garden.” In another example of a creative activity, the design team made mobiles with both the autistic participants and their support staff. The team extended their work by creating a guide to making sensory props, and they held co-creation workshops during which support staff made personalized sensory props for the person they supported.

  To develop a better understanding of the residents’ sensory preferences, Katie took well-established sensory profile questionnaires and adapted them into a set of visual sensory preference cards. For people who had difficulties in communicating likes and dislikes verbally, the cards provided a way to facilitate the communication of their sensory likes and dislikes and to create an overview of their individual sensory profile. The cards enabled the autistic participants to express their preferences by pointing or by initiating eye contact. This process directly involved autistic people.

  Example of a sensory card.

  For the daily activities project, Katie developed a set of forty-three visual cards called Objects of Everyday Use. These cards, too, were based on an existing questionnaire, the Lawton Instrumental Activities of Daily Living Scale. The photographs of daily activities on the cards provided visual prompts to help participants better understand what activity was being considered. Simple questions that could be answered by checking a box made it easier for the residents to participate in filling out the cards. Again, the focus was to make the process more inclusive for the Kingwood residents and to enable them to express the things they did or didn’t like to do around their home.

  Example of a daily activities card.

  Often, in our research, we find that the most important outcome of a design thinking proje
ct is not necessarily the new designs that emerge; it is the impact on the people involved. The cards succeeded because they gave the autistic participants a chance to express themselves in ways they had not before—giving them more control and independence to describe likes and dislikes. Likewise, these visual tools help support staff and families summon insights they were previously unable to recognize and learn more about the people they supported, facilitating changes in their daily practices.

  Support staff enjoyed working with the cards. As one explained:

  The pictures seem to make what we should be asking more precise, which makes me feel more confident about providing an answer. I also like how the picture cards help towards involving the people we support. It is about them, after all, and it’s important to give them the tools to be heard and contribute opinions and input.

  With the help of support staff, seventeen adults with autism completed the cards about their daily activities. Katie noted that “the cards enabled research teams to explore patterns and correlations between the most popular and least popular activities, the amount of support required to perform an activity, and the reasons, when possible, why the participants liked or disliked various activities.” For instance, an interest in bubbles motivated some participants to wash the dishes because of the sheer pleasure of engaging with the bubbly suds.