Innovation School MDes Design Innovation & Citizenship

Rebecca Lee (She/Her)

The image is a paper cut artwork that looks layered and tactile. If you were to run your hands over it in real life you would feel at its centre a grouping of 5 cut out adult characters and one child. The cut out characters depict a group of marginalized UK Citizens at the core of the image. Two are seated in their wheelchairs. One stands behind wearing a hijab. The central character is mid - sign, signing ‘welcome’ in British Sign Language. If you are fluent in BSL you might recognize what she is saying more intimately than someone unfamiliar with the language. The last character is wrapped in a duvet with fluffy slippers on their feet clearly navigating fatigue. Behind them is a larger paper cut out of a shell. The shells spiral pattern is also cut out and coils outward from the group at it's centre. If experiencing the artwork in situ you would be able to touch the cut out spiral moving out from the characters in the centre around and out until you are touching the outer edge of the shell. I discuss the meaning of this image further within the body of text for my projects which I understand your screen reader should detect as you navigate my page and projects. Without the accompanying projects and text I hope you can find your own artistic meaning for the tactile artwork as a stand alone piece. Enabling folks to come to their own conclusions about what it means is why I have chosen this artwork as the feature image on my page.

Hello, welcome to my GSA postgraduate showcase page. I hope you enjoy taking look around. If my approach to design resonates with you I hope in the future we might have a chat about ideas and opportunities over a cuppa in whatever way is easygoing and accessible to us. In the meantime here is a bit about my ongoing work and practice.

I’m Rebecca, a Civic Design Consultant working across sectors and ‘in the real world’. I very much include remote working and digital spaces in the latter category. I’m interested in opening doors for folks with marginalised experiences and facilitating connections and opportunities for them to participate in academic research. I understand that centring marginalised voices requires collective shifts in the methodologies researchers use, to the cognitive biases we acknowledge right through to what inquiry that leads us to collaboratively and collectively pursue. My time at GSA has helped me to refine the accessibility of my design research and to connect with other practitioners who understand that who is or who isn’t involved in a design process shapes the outcome. Design approaches and theory can help us in this endeavour as it is a practice that acknowledges inherently that no one exists in a vacuum.

Anyone facilitated with decision-making power can be a designer of sorts – we create and bring things into the world that themselves create impacts and have affects. What we cook for dinner for example out of odds and ends in the fridge nourishes us. Whether we are too fatigued to make something non-microwavable. Whether we can open the jam jar. Even the most commonplace things when we think about it can be really complex. To give a current example at a different scale: we live in a world polluted by plastic so we try to ban single use plastics like straws. We then negatively impact the lives of millions of Disabled people who now don’t have the same access to taking a drink as they used to. Something so very essential as taking a drink is significantly sometimes traumatically disrupted. The impact of a simple plastic straw is not understood from marginal perspectives before the policy decision is made. We must be far more holistic in including people and planet as active stakeholders in our practices. In a post-pandemic world we are now relying heavily on single use plastics beyond hospital care. Complex design decisions are everywhere and I’m keen to invest in design research that strives to better understand these relationships. I hope this way we can collaboratively generate healthier materials, artefacts, environments and systems fit for post-pandemic times.

To establish this type of practice sustainably civic participation is key. To enable authentic citizen-led processes designers need to understand and address access. My developing practice focuses on utilising the Social Model for Disability (Scope, 2021), Situated Knowledge (Haraway, 1988) and Crip Time (Kafer, 2003) methodologically within research design. Put into language we all might understand this means acting with folks (you) to first better understand the issues that affect their (your) lives. We can then use this understanding to inform how we can implement meaningful change together. Design practice helps us to explore how we might do this and share knowledge in accessible ways. It is a far reaching multi sensory language made up of touch, sight, sound, space, time, movement and function – it is a discipline that can go beyond words. Design can help us amplify valuable perspectives and understandings; generating stories that we can share, hear, see & feel more readily. This is vital to citizen-led research, understanding and policy change.

There has been a lot of academic jargon so far hasn’t there? I’m feeling it too so to be real for a moment – most of us would likely brick it if put in a room with policy makers, right? It is an idea well out of most of our comfort zones. But what I have come to understand and champion throughout my work is that those conversations we have around the kitchen table, the ones where the shit has hit the fan and all we can do is try to listen to and help each other – those are no less valuable or thoughtful conversations than those held behind doors in shiny offices. We have conversations at home that are a little closer to the action and we all know what it feels like. We know and understand things as we live them. What we know is important and it can help others. What matters is how we both encourage and enable the valuable insights from our everyday lives to inform environmental, service and policy change.

This approach to my work is important to me but I also know it will be important to a lot of you reading too. We are all likely, at one point or another in our lives to witness the hurt or suffering of those who matter to us most. This is a hurt which often puts a fire in our bellies and compels us to want to make change. It is this feeling that led me onto the Innovation and Citizenship pathway of the M.Des at GSA. Through ongoing times of crisis we can feel acutely the barriers that prevent us from participating in systemic changes that would affect us and ours most acutely. Understanding and dismantling barriers can be tricky. They are often complex, compounded with other issues and aren’t obvious to the majority.  Design interventions aren’t fixes but they do afford us communication and active strategies in such circumstances. It doesn’t take what has always been done as a given. If something isn’t benefiting us it can ask why and offer something completely different. It opens up tangible possibilities that we can all contribute to and enjoy exploring. You will know this yourself through lived experience if you’ve ever had to adapt your version of normal around those barriers that you and yours face. Design is not a finished solution to a problem but an ongoing endeavour that questions the relationships of the world beyond what is typical or conventional. It is the language and application of dismantling barriers and creating something more desirable in their place. It is also a process that includes you, because those pushed to the edges of society are the ones who understand how varied our experiences are and that is key to nudging restrictive societal norms into new innovative morpheus shapes.

Folks, we have so much in common but we are also an amazingly varied bunch. If we create environments and circumstances that can flex and attune to our shared diversity we will have much more nourishing and resilient approaches fit for our future. This includes research, services and policy making environments.

In a post-pandemic world we will have to navigate some complex and tough stuff together. Some of the smallest flexibilities can make the biggest differences to us all. These are exciting opportunities for us to think about in collaboration at the kitchen table, in the community centre, even at the cabinet office. No matter how small the changes may seem, they can amount to a brighter future in which we flourish as a diverse collective looking after our shared wellbeing.

Best wishes,

Becks

As I mentioned at the beginning if any of this resonates with you I think we likely have an opportunity to work together in the future. Get in touch and let me know what might make a conversation or collaboration possible – please also include how we might make that process accessible to you.

 

Contact
rebeccaleestudio@gmail.com
r.lee1@student.gsa.ac.uk
Twitter - @BecksLeeDesign
Instagram - @RebeccaLeeStudio
LinkedIn - Rebecca Lee, Civic Design Consultant
Projects
Sense Making: Exploring the Accessible Permaculture Garden
Keeping Up with the Future: Health & Citizenship Post-Pandemic Times
The image is a paper cut artwork that looks layered and tactile. If you were to run your hands over it in real life you would feel at its centre a grouping of 5 cut out adult characters and one child. The cut out characters depict a group of marginalized UK Citizens at the core of the image. Two are seated in their wheelchairs. One stands behind wearing a hijab. The central character is mid - sign, signing ‘welcome’ in British Sign Language. If you are fluent in BSL you might recognize what she is saying more intimately than someone unfamiliar with the language. The last character is wrapped in a duvet with fluffy slippers on their feet clearly navigating fatigue. Behind them is a larger paper cut out of a shell. The shells spiral pattern is also cut out and coils outward from the group at it's centre. If experiencing the artwork in situ you would be able to touch the cut out spiral moving out from the characters in the centre around and out until you are touching the outer edge of the shell. I discuss the meaning of this image further within the body of text for my projects which I understand your screen reader should detect as you navigate my page and projects. Without the accompanying projects and text I hope you can find your own artistic meaning for the tactile artwork as a stand alone piece. Enabling folks to come to their own conclusions about what it means is why I have chosen this artwork as the feature image on my page.
A collage show the silhouette of someone in a hospital be holding a computer tablet. The silhouette of the person's head and arms are comprised of the scene of a misty loch which meanders into the distance. The images spill out from the computer to which the person's attention is held. The first is that of a parent stood alone but laughing holding a giggling child up to the screen. The second shows a cosmos expansive and detailed in a gradient that shifts from pink to purple to dark black. The third shows a drawing of a group seated and practicing yoga, the instructor is seated in their wheelchair. They each arch there arms gently above their heads or gently to the side depending on mobility and comfort.

The Outside on the Inside

Wellbeing & the Remote Environment

Sense Making: Exploring the Accessible Permaculture Garden

How does being out in nature make you feel? What senses do we engage whilst we remember that we are a part of nature not separate from it?

I best understand permaculture when I think of it as good relationships between folks and their environments – relationships that enable both people and planet to sustain and be part of a flourishing and resilient ecosystem. My take on how we might engender this ‘permanent culture’ (as it was initially described) is to explore the diverse opportunities for how the practice might be more accessible for folks. The more folks who are included, the more nourishing and flourishing the relationships and practice.

This is relevant to my journey into permaculture practice as I am chronically ill and members of my family are Disabled – we all have what folks might call non-typical access needs. With 15% of Disabled people making up the world’s population I expect this also may well be an experience that has affected the life and day-to-day of you and your kin.

Throughout this project I attended to opportunities whereby everyone, including those living with Chronic Illness or impairment, could learn about and access permaculture practice. Alongside this I chose to explore the energy-efficient relationships that can be propagated within permaculture practice in relation to wellbeing. For this permanent culture to thrive we need to attune it to different people’s ways of doing things. Some folks might not have the energy or ‘spoons’ to be very physically involved in their permaculture ventures. Through this project I explored low-exertion ways of observing and interacting with the environment that would assist and inform my sustainable growing and gardening.  I considered in depth ways in which weather observations and mappings could be undertaken via mindfulness and sensorially regulatory activities. Watching light and shadow patterns on the walls inside my home cast from the sun, plants and weather in my shared garden enabled me to map a great deal of site-specific information. Sun traps (warm patches), shelter belts (protected from the elements) and wind speeds could all be mapped by observations from my windowsill. This enabled me to better plan and curate my permaculture site.

I decided to grow a low maintenance medicinal food garden (an ongoing endeavour), a research exploration inspired by my households’ combined experience of chronic illness and care responsibilities for ourselves and others. At home, whilst my Dad was with us, we had to take his mobility and low vision into consideration to afford him agency and participation in our normal everyday activities. This inspired me to explore the ways in which we could better understand the health of our plants through touch and sound; two senses to which my Dad had access. I ideated a companion tool in response that compiles auditory and tactile information (where safe) that can help us identify what our plant may be missing nutritionally in the environment in order to thrive. I explored the plants ailments using the Social Model for Disability methodologically with keen gardeners with low vision as my stakeholders – this enabled me to map other sensory information attributed to the unhealthy plants on site. The companion guide is only in its first iteration and requires co-productive prototyping and workshops with the wider blind community. It has future scope as a permaculture gardening podcast, radio format guide or personal audio manual.

A design iteration flow chart map. The first image shows unhealthy leaves in the garden. The second shows a visual nutrient guide for unhealthy plants. The third depicts information to be read aloud by a screen reader or audio guide ' Tactile Observations for Older Leaf Tip Burn: Leaves feel gnarled, rough and crisp to touch at the tips. Try adding companion  plants that accumulate:  Nitrogen & Zinc' The fourth image depicts a prototype of a tactile audio manual with inbuilt speaker. This also has scope to be compatible in future iterations with the RNIB tactile MP3 player or Connect Radio Show.

Sound and Tactile Permaculture

Accessible Permaculture

Mapping sustainable opportunities

Keeping Up with the Future: Health & Citizenship Post-Pandemic Times

Longer read – Please make yourself comfy perhaps with a warm cuppa. Do take note of content warnings. Go at an easygoing pace for you. The text is intentionally truncated into sections that you can leave and come back to.

The Context

When Covid-19 impacted the UK emergency Covid laws and guidelines were created by policy makers to deal with the unfolding issues, one strategy was to introduce the idea of the ‘Household Bubble’. This was an attempt at creating a new understanding that if successful might help us, Citizens, policy makers, scientists alike, better understand and deal with the virus. It was a strategy that acknowledged that what information scientists, policy makers and citizens needed to know in order to keep each other safe was held within what we were doing together. It introduced the idea that we could think of ourselves relationally – people to people and people to their environment – in bubbles. This relational understanding of our interdependency and our environment is something already understood within Disabled communities described through the Social Model of Disability (Shakespeare, 2010). The way we treat each other affects our access to fundamental needs, health and wellbeing. Unhealthy environments and inaccessible services can adversely affect our collective health, even beyond pandemic times.

Content trigger warning: The next paragraph contains examples of systemic racism and ableism. If this affects you, please take a moment to protect your wellbeing and keep yourself safe. You will know what works best for you. This could be to take a break from reading, go sip a warm drink, listen to music or rest. If you would like to continue reading there is the option to continue from under the ………….. line where the project description continues to touch upon these issues but in the abstract. It is a valid and understandable choice to not continue reading. You can decide to dedicate this time to something that safely evokes easygoing joy for you.

Within the margins of society the impact of our environment, both social and ecological, has been and continues to be detrimental. During the pandemic in the UK, pre-established inequities in access to healthcare have been and continue to be magnified. These adverse relationships can be easily traced within the newly defined bubbles. Households that include Disabled family members who are reliant on the unpaid care of their kin have been put at great risk. Especially when that kin still has to attend work in person at the bequest of employers or in order to pay essential bills. This has affected kin in low-paid precarious work and service jobs more acutely than others. The homes of both young, working age and senior Disabled folks have experienced a lack of understanding, support and protection. This is compounded by previous intersectional health inequalities relating to socio-economic status and environmental factors. ‘In England and Wales, males of Black African and females of Black Caribbean ethnic background had the highest rate of death involving COVID-19’ (Office for National Statistics, 2020). Latest figures show that Disabled people account for every 6 in every 10 Covid deaths (BBC, 2021). Our valuable links of care have been acknowledged epidemiologically but are not well understood or supported socially. In my research I hoped to better understand these social connections and interdependencies that are so entangled with our collective health.

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The Project & Complexity

This new idea of Household Bubbles highlighted something that we don’t yet seem to address within overarching pre-established policy: 1) Relationships of care are ever-present and complex 2) How we act collectively, not simply as individuals, can shape people’s lives, health, wellbeing and mortality 3) We experience fluctuating capacities, interdependencies and relationships of care together all the time and this fluctuation is magnified during pandemic times.

Actively addressing access and our interdependent relationships of care was paramount to this research project. I set out to better understand households who experience Disability and unpaid care responsibilities (kin care) during unfolding post-pandemic times. Centring Citizen-led inquiry, I worked with communication experts across disciplines (Education, Wellbeing, Civil Service & Hospitality) who also had personal lived experience of both kin care and disability. In the later stages we refined this to participants/households of refugee heritage and invisible disability due to the experience of those involved in the project. Together we scoped better understandings of the experiences that many households face. I hoped to better understand these experiences in relation to our pre-established institutional understandings, policy design methods and shifting nature of novel pandemic times.

 

 

 

 

Key pre-pandemic insights that emerged:

  • Differing communication methods and languages inhibit easygoing knowledge sharing between medical settings, researchers/evaluators and such household bubbles.
  • In households of kin care, the barriers that affect each household member individually will affect them collectively i.e if a kin carer is affected by a barrier that barrier will affect Disabled household members too – they live interdependently.
  • Pre-pandemic policy often expects individuals to access support and services as individuals via siloed routes – this in turn affects how the service is evaluated and what data is collated.
  • Qualitative methods often aren’t relational and therefore atomise/individualise a lot of experiences that in the real world are entangled and interdependent.
  • Many kin carers experience a disability or chronic illness themselves due to the impact care work has on their day-to-day physically and emotionally.
  • Most folks with whom I worked would not tick the box on evaluation forms or understand themselves to be ‘Disabled’ or ‘Unpaid Carers’ despite meeting the criteria on paper.

We found that all these issues can be overlooked at a greater and exacerbated scale during fast-paced and volatile post-pandemic times. Due to this complexity we found often that our pre-established institutional case studies (and subsequent methods/definitions such as personas) were not successfully engaging with and capturing the experiences of folks from such households. This has seemingly had a detrimental affect on research for policy and service design during both pre and post-pandemic times.

Participatory Scoping and Methods

Using remote and sensory object interviews, the expert participants and I explored what might better engage folks in participating in or leading research projects into Disability or kin care if a) they are skeptical of the institutional setting or b) didn’t believe they should take up space and agency within this setting due to the aforementioned insights. We found that shared understanding and wanting supporting others in similar situations were the biggest incentives to participate. Past experiences of racism and ableism in institutional settings, lack of understanding, and fatigue were the greatest issues to negatively impact people’s likelihood to participate.

Utilising what we had learned we considered what would move us through some of these complex hurdles. We used appreciative enquiry to explore ‘what enables you to feel comfortable sharing your experiences’. We used avatars to represent people in the participants’ lives without disclosing any identities. We shared dialogue around these characters from participants’ real experiences of ‘Where and when they had felt comfortable sharing their stories’. This enabled them to disclose experiences that could be re-shared with anonymity. Any identifiable information was filtered through made-up characters. This was a methodology inspired by my experience in devised theatre through my background as a theatre designer. In devised theatre members of the company, typically in a community setting, create a script within the rehearsals through character building and improvisation. Often the resulting performances express stories of significance for the community.

An Emerging Method Innovation

The result of this project was that of the Emerging Community Persona: an engagement and research method alive to shared experience and changing times. It is designed to bring folks into the fold of citizen-led research or Participatory Action Research through their emerging shared circumstances. An initial group of experts with lived experience devise a ‘voice’ that represents the collective community experience. This voice offers kinship of understanding inviting others in similar circumstances to join the conversation. You are likely to feel a resonance with the voice if the details it describes match your day-to-day perspective. It is built out of the knowledge of what care and invisible disability is like in an experiential and relational way. It then has scope to generate richer shared understandings as it evolves with who participates. This has scope to deliver kinship, recruitment and leadership across different media (radio, tv, pamphlet and online) making the offer more holistically accessible. It is an engagement method designed to engage those whose experiences are novel and emerging, not pre-defined by existing case study (perhaps those experiencing long COVID) and those who don’t identify with pre-existing labels (ie kin/unpaid carers who don’t relate to the terminology ‘kin/unpaid carer’). Limitations include the pace at which it can be devised and the labour involved in participating. This will be something to address within future iterations and inquiry. Future versions have scope to explore and give immediate qualitative data on novel social phenomena with no pre-existing definition. They could also help our understanding as we expand our knowledge of under-researched (or unsuccessfully engaged with) experiences. This is an emerging methodological guide designed for post-pandemic societies where novel experiences are fast-paced and prevalent and institutional labels do not yet resonate with tangible real world experiences.

A depiction of being spoken to by the Emerging Community Persona devised and created out of shared experience. Text reads 'Hi, How are you doing today? Recent times have been a lot, we aren't here to pretend they haven't. How is life treating you at the moment?'

Voices of the Emerging Community Persona - Connection

Text reads - Household care bubbles don't draw the same boundaries as borders. There is a drawn depiction of a video call from Somalia to the UK. A daughter and mother discuss the care of their grandmother/mother.

Household Bubbles Cross Borders - Connecting Remotely

A sketch shows different family members situated within a light pink bubble. Line drawn ovals orbit the bubble and sketched characters. Upon the orbits are descriptions of those included in the household bubbles and their identities: Parents, Grandparents, Children, Chronically Ill, Disabled, Kin Carer

Household Bubbles - Kin Care

Text on image above a pair of shoes reads: The emerging method reimagines our typical use of personas by...'Sharing 'our' stories when established institutional definitions of 'our' circumstances do not resonate with us.', 'Finding ways to express 'our' messy, connected and complex experiences, so our stories engage us in further conversation with each other'.

In 'Our' Shoes - Reimagining Personas

Participants describe what the ECP method offers them.
Written text depicting the voice of the Emerging Community Persona reads: 'Before we start - I just wanted to check that you up for this right now? Because yes we are always busy but if you need go to the loo, then please go pee! /attend to your catheter/ your period. It's ok to read this afterwards. Your wellbeing and comfort comes first'.

Voices of the Emerging Community Persona - Support

Engagement Map - Households experiencing kin care & Disability