Chapter 1
An introduction to Inclusive Design
A very personal journey to understanding how inclusive design can win hearts and minds — and generate business value.
A very personal journey to understanding how inclusive design can win hearts and minds — and generate business value. During this article, I try to explain this fast-growing practice, and why taking inclusive design seriously is essential in today’s environment. I also look at specific examples from healthcare, and how reframing our concept of the user can create more compelling customer pathways, leading to positive trickle-down effects in society.
This article is an introduction to inclusive design, as experienced by an individual and also collectively. It’s the first of a four-part series that explores the consequences of inclusive design for business and how they create value, taking in current perspectives, insights and best practices while looking to the future of this crucial — and fast-developing — area of design and product thinking.
It’s usually quite easy for designers to agree on the core principles of what we do. Our role is straightforward enough: we strive to understand users, so we can create an innovative solution for a product or service to meet their needs, while also generating business value. Designers tend to use their own understanding of the world to make assumptions and drive their design towards the business objectives. This generates an experience that may be valuable for the business and works perfectly for the majority of users.
But this definition troubles me. It’s incomplete, and partially inadequate because it considers only the main group of users — the ‘normal’ ones. What about the ‘extreme’ users? Those whose needs are beyond our current design understanding?
We all agree that the products and services we create should include them, even if they are the outliers of our assumptions. In fact, I would go further: I believe it’s vital to understand all user mindsets, but especially the ones we consider to be the outliers. It’s not only the right thing to do, but it also offers a real business advantage.
Who are the ‘extreme users’?
A family’s journey when a patient is diagnosed
Healthcare offers a perfect illustration of the importance of design for extremes — after all, it can mean the difference between life or death.
But when we think of healthcare, our focus naturally tends to be on the patient. Real, dedicated focus on outliers and extremes also means designing for a neglected user group: the patient’s family.
Here’s an example: two parents were concerned that their young boy hadn’t started speaking by the time he was two. When doctors ran tests, they discovered he was deaf. Instantly, the parents were thrown into a rollercoaster journey of fear about his future, anxiety about whether they would have the resources to cope, and — worst of all — a lack of information about how to deal with their child’s condition and how to communicate with him.
For the boy, the world remained the same. He was happy as he’d always been. For the parents, frustratingly, all they could do was wait — for information, for an appointment, for a phone call with news from the healthcare provider.
“ It is key to prioritise expanding patients’ and caregivers’ capacity to manage health conditions more effectively.” — Designing Truly Patient-Centered Health Care
Designing for a patient’s family
What to consider and why
When people experience a traumatic change in their status quo, they typically go through the well-known five Stages of Grief — denial, anger, bargaining, depression and acceptance. Behaviour such as this needed to be considered — it’s important to understand in what context your design will be reaching users.
But when the patient isn’t aware of their condition, it’s their family and friends who suffer emotionally — yet they are often not seen as part of the ecosystem.
In such cases, we need principles to help us design effectively for the family:
- Clarify the diagnosis: give them as much information as possible about the patient’s condition and the extent of the problem.
- Give emotional support: not only will they then be in a better state to support their loved one, but they can make important care decisions more effectively.
- Explain treatment possibilities: provide as much information as possible regarding all the possible outcomes, from success to the failure of the treatment, and everything in between.
The family in this case soon discovers that technology is their saviour: it provides details about the diagnosis of their child, connects them to their extended family and other healthcare professionals around the world, and will be the enabler of a normal future life for their boy — turning a disability into a superpower.
A cochlear implant allowed the boy to hear again, listen to his favourite music and speak normally with his peers. He can even stream Spotify directly into his ears! With his bionic hearing, he might hear a butterfly flap its wings, and when he chooses to, he can experience the purest silence — unattainable to most.
“ The reality is that you will grieve forever. You will not ‘get over’ the loss of a loved one; you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again but you will never be the same. Nor should you be the same nor would you want to.” ― Elizabeth Kubler-Ross and David Kessler
Now let’s meet the family
Yes, you’ve been reading my own story. The boy with the cochlear implant is my son, João.
The individual family profile image on the top, detail the mental health and awareness for my son, my wife and myself during the journey.
I’m so proud of him and all he has faced so far in his life, and the strength he has shown us. He is now learning to deal with his bionic ears and how to effectively communicate without using sign language.
Not surprisingly, I’m passionate about how designers can make a patient and his/her family’s journey kinder and more human. But my story could be any family story — perhaps concerning an elder instead of a kid, such as an Alzheimer’s patient. What they have in common is that the patient isn’t aware of what’s happening and must rely on their family to support them.
Find your outliers
Pursue their lovable experience
Designing for extremes isn’t easy, especially when we have a pack of assumptions and points of view built around ourselves. Let’s understand that we are not designing for us — we are designing for a portion of the population whose challenges we may not even be aware of.
Find your outlier: in my case, my family was the outlier. However, in many cases, you will need to focus your research to find these outliers, ask them about the biggest pitfalls they face and try to understand how design can help.
Uncover the business value: all design work should deliver business value — not just the most innovative idea or the prettiest design. If you are able to uncover the real business value behind the design for inclusion in your product or service, it will not be seen as an extra, but as a part of the value, you can create.
Don’t just be empathetic, be inclusive: as designers, we always talk about being empathetic with our users, but it’s important to be more than that. We must be inclusive and conceive a design that can be accessed, understood and used by all users regardless of their age, size, ability or disability. Inclusive design is not a methodology or a framework. It’s a mindset that should be present in all products or services to provide a lovable experience for every possible user.
That’s why my next article in this series will cover how inclusive design has a trickle-down effect, not only boosting people’s lives but also improving our world overall. This kind of design thinking leads us to view disability as not simply a personal health condition, but as a mismatch between human interactions in society.
This article is the first in my series exploring the insights and implications of inclusive design. The others can be found here, including the next in the series which asks ‘What is inclusive design?’ in more detail.
Hungry for more?
In the past few years, multiple companies and good people have been writing about things related to this article if you are interested in reading more about it here are a few places where you can start:
- What You Should Know About the Stages of Grief
- Comparable experiences: the starting point for inclusive design
- How design can help with inclusion
