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Laura shares her dual perspective as a disabled Occupational Therapist, with both personal and professional experience of the ‘art’ of living as a disabled person. Laura highlights links between Occupational Therapy core theory, living as a disabled person, and usability testing - and what we can learn from this. Laura also highlights the importance of the individual, suggesting tangible and practical strategies for embedding a person-centred and inclusive approach to practice within usability testing.

The art of living creatively as a disabled person in a disabling society

By Laura Owers (06/09/2022)

The starting point
The starting point of this story is my perspective. I’m an Occupational Therapist (OT), and identify as disabled and bisexual. As with all intersecting identities, these have shaped, and continue to shape, my perspective and life experience. None of these aspects of my identity, and/or experience, exist in isolation. This interconnectivity can often be lost in EDI work - that individual protected characteristics are a part of the whole, that we need to understand how they interrelate and impact on a person’s lived experience. Whilst shared experience is relevant and important, fundamentally we each carry and bring our own unique set of experiences. If you’ve met one person who identifies in a particular way, then you’ve met just the one person! It is my perspective that will underpin this story, a series of threads that represent different aspects of my experience and perspective, coming together to from the whole.

Occupation and identity
A principle at the core of Occupational Therapy (OT) is the importance of occupation to our identity and wellbeing. ‘Occupation’, in this context, relates to participation in meaningful activities. Often daily activities, but essentially any activity that has meaning as defined by the individual. In summary, who we are, shapes what we do, and what we do, shapes who we are. The profession recognises the significance of meaningful occupation on our sense of well-being, self-worth, and physical and mental health, and understands the impact if we don’t have access to this.

As a disabled person (since birth), my connection to this principle is through lived experience, long before I was introduced to the profession and the underpinning theory! It is with this personal experience that I approach all aspects of my professional practice.

Activity analysis
A central approach to OT practice is the concept of activity analysis. In this process, we break down a seemingly simple task into all off the individual component parts and underpinning factors. The classic example is making a cup of tea! We consider the physical aspects of the task, such as dexterity, and muscle strength, and the cognitive aspects of the task, such as sequencing, memory, and object recognition. Additional aspects include the emotional and psychological underpinning factors, the significance of mood, motivation, confidence, identity and roles. And finally, understanding the importance of the environment – how accessible is the environment? Is the layout, space, and design at its optimum to enable a person to participate?

Once we understand the underpinning factors, we can then identity to best way forward. The starting point is a person, task, and their aspirations, and the goal is to identify and provide the best approach, tools, and environment to meet that need. The process recognises the potential complexity, particularly when difficulties arise as a result of disability or ill health. It allows a person to adapt and consider an alternative approach that best aligns to their strengths. It is a process that should centre the individual and requires genuine partnership to be at its most successful. While the starting point is different, activity analysis allows us to hone in on the best tools (products) for the job. To consider all product features to identify their suitability to meet a specific need. These core principles have potential application in usability testing, particularly when thinking about embedding inclusive practice and considering the value of diverse perspectives.

The art of living: when person meets product
The social model of disability recognises that it is the environment that is disabling to the individual. My UK-based lived experience is of an ableist society that has presented a range of both physical and attitudinal barriers throughout my life. All of which it has been my responsibility to ‘overcome’. We judge the value of a disabled person based on their ability to do this, offering praise for the achievement rather than recognising that it shouldn’t be necessary. Growing up in this environment, I’ve often applied this same attitude to myself. Having the right products, but also using them in the right way, is often the best and sometimes the only way we can navigate our environment. The right product can maximise independence, but more importantly it is about providing autonomy and control over our environment and therefore lives. It might be the difference between being able to do something altogether, but it’s also often about symptom and life management, changing as our needs change. In my experience, a fine art honed over many years, and a result of many a failed purchase or tricky situation!

As a disabled person, I’m required to see products in the way that they will best work for me, not necessarily the way they have been marketed or advertised to me. I need to understand the core features, what do I need the product to do, and what won’t work for me? You learn to do extensive product research even for the simplest of items. Understanding the key aspects of the product specification, such as the weight, type of handle, switch or lid, and shape. Even within Occupational Therapy, the emphasis can often be on disability specific equipment. I wouldn’t be a good OT if I didn’t get excited about specialist seating or a good shower commode chair design! However, what I also know is that the most important products in my life are everyday products never intended with that specific purpose in mind. Almost every product I use includes specific consideration of my own needs. It is just something that is integral to my daily life - and shopping experience! I’m not sure that this is fully understood outside of the disability community. The value this insight can bring to usability testing has huge potential.

I use different products for different tasks and environments, and this can change on a daily basis as my needs change. Either using a different product altogether, or using the same product differently. At home, a lightweight hairdryer, pans, and kettle. A good jar opener! Avoiding certain switches, opening mechanisms and lids. At work, a wheeled trolley instead of laptop case, a lightweight footstool. Even wearing specific work clothing to minimise symptoms during my working day.

I’ve also needed different products at different stages of my life. At university age, I had a gastrostomy tube and required an overnight peg feed. Then it was vital I had luggage that I could lift and carry, but that also allowed me to carry my pump, heavy bottles of specialist feed, and university text books when travelling to and from my home and university addresses. Now, with a three-year-old, the past few years have meant navigating the minefield of baby products as a disabled parent. The significance of finding a baby carrier that has allowed me to carry my son up until the present day, which as somebody with joint and mobility difficulties is not something I had considered possible. A simple product that has had a huge impact on my parenting journey and identity, when so many aspects of motherhood have been a challenge or not been an option for me.

Person-centred practice
Person-centred practice is a phrase that's often over-used and misunderstood, particularly in health and social care. An ethos that is totally at odds with what we often see in practice. The nature of seeing a protected characteristic first, often the case in EDI work, or seeing a symptom or diagnosis first, as in health and social care. If we cannot see the person as a whole, then we cannot be truly person-centred in the way that we work with them, whatever our role and setting. Sometimes the ‘work’ itself – the processes and system, the agenda and remit, the regulations, clouds our ability to focus on the person at the centre. Identity is defined by the individual, the significance of the individual characteristics and the way they interrelate. Start with the person, understand their individual needs, and create the environment to support them.

Diversity and belonging
EDI work is ultimately about creating an environment that allows a person to thrive and fosters a sense of belonging. True belonging-centred practice is not about inviting specific people based on specific characteristics. If a person is included but not valued, or in an environment they cannot thrive in, then we are missing the point. With this in mind, below I’ve shared some considerations and practical strategies for embedding EDI within usability testing.

It’s important to understand why people haven’t engaged previously. Was it that the environment didn’t meet their access needs, or that it didn’t feel safe? Maybe the person didn’t feel they would be fully understood or valued. Many people will exclude themselves before ever engaging. For me, I know enough about my health, my needs, and my capacity/energy levels, and so I often make the decision to opt out in advance. I also recognise in the language and approach to communication, whether I will feel comfortable participating in a specific project. The motive here is rarely from a self-sacrificing perspective! Rather, essential for self-protection and survival. You learn from experience to avoid getting yourself into a difficult situation that might at best prompt disappointment and embarrassment, and at worst compromise health or safety.

There are fundamental principles for accessibility and inclusion, but it’s also important to avoid a one size fits all approach. Understand what your starting point is. How will people hear about the work, is the communication accessible, is the language inclusive? Don’t predict what might be needed for all, and try to create it in advance. Apply a curiosity-based approach. Ask questions that show a genuine interest in getting to know a person and the perspective they are bringing, demonstrate that you are open to hearing about their specific needs and will take steps to meet them where you are able to. Think about how you plan to respond to the answers to those initial questions. What is realistic and feasible within a project’s guidelines and budget? Work out what space and budget you have for flexibility.

The right environment allows somebody to advocate for themselves. Provide space for somebody to present an alternative approach that you haven’t considered. There will inevitably be solutions that you haven’t anticipated. Be honest about the scope of the project and resources, work with the person. Let them decide whether this is something they can participate in and add value to. The key principle is that you don’t have to have all the answers, just an idea of resources, and a genuine willingness to have the conversation, and early on.

Conclusion – the common thread
The common thread for me throughout my life, and this story, is the theme of creativity. Recognising that living life as a disabled person in a disabling society is an art, and the unique perspective this can bring to usability testing. The art of Occupational Therapy, identifying the tools to support a person to engage in the aspects of their life that have most meaning for them. Understanding that optimal and elusive balance where person, task, environment and products meet. And the art of embedding EDI in our practice, and facilitating genuine diversity and belonging.

Something often complicated by systems and peripheral processes, making it difficult to achieve in its simplest form. Fundamentally, it’s about creating an environment that allows a multifaceted individual to be heard, to thrive, and to feel valued, as their full authentic self. It’s about a conversation and a process, the starting point rather than the end goal. It is about allowing room for creativity and flexibility, not predicting solutions but allowing them to be identified in partnership.