 Some guidelines for Permaculture event information and marketing, for improving access to Permaculture for people with chronic illness and/or disability, and people who are neurodivergent.
This post is also available as a PDF here Earlier this year I published an article on my blog - Accessing Permaculture for people with chronic illness and/or disability - positives, challenges and suggestions for a more inclusive permaculture. In this short post I share some suggestions, from the linked post, of information to include in general Permaculture Course and Event descriptions and marketing. This in turn will then help more people with chronic illness and/or disability and neurodivergent people to access and then utilise Permaculture Design This list isn’t meant to be prescriptive and it isn’t exhaustive. It’s been compiled from the stories, voices and ideas of people who responded to my request for information, for my initial article linked above.
Please feel free to use this information in your own work or to contact me with any feedback, ideas or questions. For discussion about some of the issues identified, join the Permaculture, Chronic Illness, Neurodiversity and Disability Facebook Group
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Book Review This review is also featured in Permaculture Magazine - Autumn 2019 (PM 101) The Permaculture Design Companion by Jasmine Dale is a very beautiful new permaculture resource, in many ways. Based on Jasmine’s 20 years of experience of teaching and mentoring over 1000 permaculture students from her home at Llammas Eco Village in Wales, her book is a brimming treasure chest of diverse permaculture design tools, process and principles. The Permaculture Design Companion itself is designed to be a workbook and literally a companion to guide and mentor us through a personal permaculture project. Although this is one of the main intentions of the book, I can already see how the individual sections as stand alone topics will be incredibly useful for many of us too. Jasmine’s written communication style is chatty and fun, while consistently demonstrating her obvious in-depth diverse knowledge and experience both as a permaculture designer and teacher.   Pages from The Permaculture Design Companion by Jasmine Dale The physical layout of the Permaculture Design Companion is something that I immediately connected to with it’s A4 size, relaxed font, and its many, many gorgeous diagrams, illustrations and spaces to make notes throughout.
The book is very much focused on using permaculture to design land based/physical projects but one of its many pluses is how it consistently weaves the connection of people involved to the physical space of the design. I particularly like the section about making sure that our wellbeing as the designer of the project is well supported and valued as being central to a successful design. The Permaculture Design Companion is aimed at both folk who are brand new to permaculture and also to more experienced practitioners, and I whole heartedly agree with this. Having quite a few years of permaculture design experience now myself, I continuously learnt about new ideas and approaches to the many aspects of permaculture design, as I read and engaged with the exercises. The Permaculture Design Companion is yet another fantastic new book from Permanent Publications and like so much of their work, would make a wonderful present and life tool for ourselves and the people we connect with. I’m going to be starting a new garden design within the next few months and really looking forward to testing out this fantastic new permaculture resource throughout the process. If you decide to buy this book then please consider buying directly from the Permaculture Market, (where there is also loads of other fantastic permaculture related resources to inspire you!) This book review is also published in Permaculture Magazine Autumn 2019 (PM 101) Book Review Strands of Infinity is a beautiful collection of poems from Permaculture Designer and teacher Looby Macnamara. (and one poem by her daughter Teya), written over recent years. Subtitled "Poetry to reconnect", this is exactly what this powerful writing does. Connecting the personal, political and spiritual we are encouraged to explore how these intertwining threads manifest in our own life journeys. The poetry in this book is inspirationally written for both sharing at events and gatherings, alongside our own personal reflection. With themes such as "Change the story", "Gratitude as Attitude," "This Woman is Rising" and "Will Humankind Survive", Looby's poems are wonderfully accessible on many levels to a diverse audience. I can strongly recommend Strands of Infinity as a tool for our present and our futures
 Using Permaculture to improve how we die I am a palliative care nurse and permaculture educator with a spiritual self which is deeply rooted in Earth-based seasons and patterns. Issues relating to death and dying are intrinsic to most aspects of my life. Several years ago, I started exploring how permaculture can improve how we die in the UK and in many parts of the world. Central to this was the fact that “Dying with dignity” appears in Holmgren’s Permaculture Flower, and generated many interesting discussions in my peer groups within the permaculture community. This eventually resulted in the launch of my permaculture project: Creative Dying, a free online resource.
Death and Dying in the UK In the UK and in many other parts of the world. Death and dying is still a very difficult, taboo topic, cloaked in the fear and unknown. The way in which many of us die at present in the UK is at odds with permaculture principles and ethics. People do not often get the death they would like, many needlessly dying in hospital experiencing unnecessary and distressing procedures, tests and treatment, away from their home, with resulting feelings of confusion and lack of control. Inequalities around whether a person is enabled to make decisions about what they would want for their end of life and care after death are huge – age, disease type, social class, sexuality, race, mental health, with very real consequences about whether someone then has a ‘good death.’ In my experience, fear, distress and lack of control about how we die can often mean life time effects on emotional and physical health to those left behind, due to complex bereavement. The environmental impacts of how we die are also very significant. – from the resources needed for end of life care in hospital, to the damaging actions of many aspects of the funeral/after death industry, - embalming, cremation, coffin materials - and financial affordability (the average cost of a funeral in the UK in 2018 was £3500 for a cremation, and nearly £4300 for a burial ) My experience in the permaculture community is that even within groups of people who are very knowledgeable, empowered and solutions focused about other aspects of their lives are reluctant to talk about how their end of life might be. So, what can permaculture offer as a way solutions focused way forward? Before We Die People who talk about and plan for their death, tend to have a much better experience of death, and those around them : - family, friends and community - then go on to have a more open and positive attitude towards death, loss and supporting others as they approach death. Planning for what we want to happen as we die and after our death is much easier to do when we are well, than waiting until we are unwell and perhaps too poorly to make decisions. There is a much greater chance that End of Life wants and wishes will happen if we have a plan, and others close to us, are aware of those plans. Ways to start talking about death and dying, and making plans include:-
As We Die If we had some control (most people, with the right support, do), what would we want our death to look like? Where would we want to be (if possible?) Who would we want to be there? What support would we need and want? One exciting and rapidly growing role is that of a Death Doula – non-medical people who are trained to be alongside terminally ill people and support those close to them, at the end of their life. There are several places in the UK where Death Doula training is available now and the numbers of people working in this sphere is spreading steadily. Obviously we cannot all predict how we die and for some we might not be able to achieve the ideal death we hoped for ourselves. It can be useful to have a ‘plan B’. For example, if you were to die in hospital, who would you want to be there? What kind of medical/nursing intervention would you want? What possessions, music, art would you want to surround you from home? After We Die What do we want to happen to our bodies after we die? How do we want our life to be remembered and celebrated? With our present systems of after death care in the UK, many people can feel frustrated, and let down, with their experience of grief deepened, as after death care activities carried out by health care professionals and then practitioners in the funeral industry can feel impersonal and profoundly disconnected from the identity of the person who has died. In addition, the financial cost of much of this is beyond the reach of an ever increasing number of people. There is no legal obligation to use a funeral director for after death care in the UK – though if you choose to do so, there are some wonderful Funeral Director and celebrant businesses who can ensure the whole process is as in keeping with the life of the person who has died as possible. In addition wherever we die, we can choose to have friends and families take care of us (wash, change clothing . Making this request known to health care staff involved can mean this is more likely to happen In the UK one of the most Earth regenerating ways to care for the body of someone who has died, is burial, where the body is wrapped/contained in a locally sources biodegradable material, in a geographical location where other life can benefit from the nutrients released by our decomposing corpse. (I’m currently knitting a cover from UK grown wool – which will be used a blanket, for hopefully many years, then my plan is my body will be wrapped in it before I am buried as close as possible to the place where I spend my final weeks of life.) Organised Woodland Burial sites are the most obvious choice of location., but there are other perfectly legal options. Globally there are some great projects emerging looking at ways of increasing Earth Care with relation to what happens to our bodies after we die. These include:- Recompose - transforms bodies into soil so that we can grow new life after we die. The Living Urn – growing trees from human ash Ecoffins - environmentally friendly coffins and caskets Conclusions Permaculture design offers us many answers to how we can improve an experience we all face, and which connects every living being and system on our beautiful planet. Opening up conversations, exploring fears, empowering ourselves with knowledge and support and then making documented plans are all very real ways of ensuring we work towards Earth Care, People Care and Fair Shares as we die. Resources In this article I have provided an overview about how permaculture design can help with way we die, which will hopefully engage a much bigger conversation. The following resources can help you to explore this topic further. As part of Creative Dying, my own project exploring how permaculture can improve how we die, I have a regularly updated page sharing many online, in real life and print resources. Go to Creative Dying for lots more information and ideas about using permaculture to improve how we die. Other (UK focused) favourite key online resources of mine are Natural Death Society Dying Matters Power of Attorney Compassionate Communities Soul Midwives For those people who use social media as a way of connecting and learning new knowledge, there is a wonderful diverse community of people globally working word to raise the profile of improving attitude and experience of death, dying and bereavement. The hashtag often used to link this work is #deathpositive. Finally – I would like to acknowledge the potential for triggering difficult feelings relating to loss and bereavement that people may experience through reading this article. These reactions are totally understandable and healthy. Many of us have experienced events where grief has been ongoing and complex. If this has happened for you then giving yourself to engage in activities which for you can provide the support you need is very much ok. If you find that you are needing something more than your usual emotional support tools then I can recommend the following links as first steps What’s Your Grief Cruse Bereavement Care An earlier version of this article "The Art of Dying Creatively" was also published in Permaculture Magazine (Autumn No 93)  I'm starting to put together a directory of permaculture projects in the UK, (demonstration sites, courses, events, other permaculture services), where issues of access for people with chronic illnesses, disabilities and/or neurodiversity, are included as part of the project design.
Does your permaculture demonstration site , course, event or other permaculture service, actively encourage the participation and connection of people with chronic illness, disabilities and/or neurodiversity? If so and you would like to feature in this developing online resource, please email me katie@ktshepherdpermaculture.com and I will send you a short questionnaire to complete. For more information about accessing permaculture for people with chronic illness and disabilities click here For a list of top tips about how to improve access to permaculture for people with chronic illness and disabilities click here To connect with discussions about these topics and more, feel free to join the Facebook Group Permaculture, Chronic Illness, Neurodiversity and Disability  Lyme disease awareness packs available from Lyme Disease UK (link below) Lyme disease is a bacterial infection that can be spread to humans by infected ticks. It's usually easier to treat if it's diagnosed early. Not all ticks carry Lyme disease, but the numbers of those who do, are thought to be rising, in a response to Climate Change. Lyme disease is caused by Borrelia, a spirochete bacteria. It’s the most common tick-borne disease in the northern hemisphere and there are multiple strains of the bacteria. Lyme disease is endemic in many parts of the United Kingdom, particularly in woodland or heath-land areas but disease carrying ticks can also be found in cities and gardens. Lyme disease not treated immediately, or not treated according to 2018 NICE (NHS) guidelines, can result in long term severely disabling illness, which is nearly always much more difficult and sometimes impossible to fully treat.  Last year I was diagnosed with long term complications from Lyme disease - these are the main symptoms I experienced at the time I was diagnosed. Thankfully, many of these are improving although I continue to be very disabled at present. Comprehensive information about Lyme disease prevention, detection and treatment can be found on the Lyme Disease UK website.
Given that most permaculture demonstration sites and events are based at least partially outdoors, it's essential that folk facilitating and attending these projects and events are aware about preventing tick bites, and then being able to identify early signs of possible Lyme Disease infection, alongside accessing prompt medical intervention. Lyme Disease UK produce an excellent (free) awareness pack which includes both posters to display and leaflets and "essential info" cards designed to be given away for individual use. I urge anyone organising and facilitating outdoor permaculture events to send off for these packs to generate increased awareness of Lyme disease for people attending their projects and events. You can send off for a Lyme disease awareness pack via the link below Lyme Disease UK Awareness Packs I will be posting more about Lyme Disease from my social media spaces throughout Lyme Disease Awareness Month in May . Feel free to connect with me on Facebook , Instagram and Twitter . You can also sign up to my newsletter for monthly updates about my creative permaculture projects, plus links to inspiring work from other women in permaculture. Top tips for permaculture events/courses facilitators and permaculture demonstration sites  Kt Shepherd Illustrations In February of this year I published an article on my blog - Accessing Permaculture for people with chronic illness and/or disability - positives, challenges and suggestions for a more inclusive permaculture. In this post I share the "top tips" for permaculture events/courses facilitators and permaculture demonstration sites, arising from the article. (These top tips are also available as a PDF here)
 I haven't been well enough to grow any of my own food for the last couple of years, so It’s really great to be sowing seeds for an edible garden this year - These ones are getting ready to germinate on a warm indoor window ledge - super hardy “Latah” very early tomato, “Nigel’s Outdoors” green chilli and “Pretty in Purple” rainbow chilli - all from the fab Real Seeds Catalogue
I've also started sprouting seeds, again on a warm indoor window ledge. These ones - radish, broccoli, alfalfa, mustard and cress - are available in quantities suitable for sprouting from Tamar Organics. Later this week I'm also going to be sprouting brown and green lentils, and chickpeas. I use the sprouts as raw toppings to any dish, or added to a stir fry just before I turn the heat off, to enjoy warm. Sprouting seeds, pulses and grains increases their nutritional availability, as well as their fibre and protein content, plus they taste really great. And can be grown all year round inside, meaning that I can eat home grown food cheaply 365 days a year with very little work and time, (the sprouts just need rinsing twice a day), involved. And that makes me very smiley! You can learn more about sprouting here
- positives, challenges and suggestions for a more inclusive permaculture Use and Value Diversity - illustration by me (This blog post is also available as a PDF here ) (Mainly UK-focused, though many aspects applicable to other countries too.) Since becoming very unwell and disabled nearly two years ago, I have learnt very quickly about what it means to be a person with disabilities attempting to navigate everyday life – and within that life, being unable to access many of the things I had previously taken for granted. Given that permaculture knowledge, experience, events and demonstration sites were previously a big part of my life, I have become increasingly aware of how difficult it would be for me to now access many of these things; in some cases it would be impossible. If I can’t participate in these events that are so important in my life, I wondered how many other people are also struggling to engage and connect with permaculture because of chronic illness and/or disability. As I started thinking about this in more depth, I set up a Facebook group with the intention of connecting with other people in the permaculture community with chronic illness and/or disability. (CI/D). (Recently, after some discussion in the Facebook group, it was decided that it made sense to add “neurodiversity” to the name and themes of the group too. The topic of neurodiversity inclusion isn’t discussed in this article, as the decision to add neurodiversity to the subject content in the Facebook group was made once I had started writing this post up. Many of the issues mentioned here – though not all of them – will also be relevant to neurodivergent people) If at this point you need more information about the definitions of chronic illness and disability then please see the links shared in "Designing Solutions", further on in this article. In addition to setting up the group, I went on to openly ask some questions about accessing permaculture for people with CI/D in several UK focused Facebook groups about permaculture and also via a post on the Permaculture Association (Britain) online noticeboard. People were invited to respond to the following questions, either in public in the group or by emailing me. In total, 47 people (mainly from the UK) responded in one of these ways. The aim of this information-gathering was to access reflections on experiences; it was a place to start a conversation rather than to undertake a structured research project. Here are the summaries and direct (anonymous) quotes of the responses to each question. (This article is quite lengthy, as I wanted to be able to include the voices of as many people as possible.) 1) Do you identify as having a chronic illness and/or disability? A diverse range of chronic illnesses and/or disabilities were included in the response to this question. These included physical illnesses, mental illnesses, learning disabilities (including dyslexia) and physical disabilities. Several people were keen to include neurodiversity as a disability too, as they pointed out that the education and benefits systems in the UK treat it as such. Many people also said that their illness and/or disability was a ‘hidden’ one, meaning that other people couldn’t immediately tell if the person with the chronic illness and/or disability had extra needs. A common theme evolved around many people feeling disabled by their environment, which frequently does not allow differently abled people to participate in life as they need to or would like to. Anyone has the potential to have additional needs and people with chronic illness and/or disability should be accepted to self define this, and not judged by others in doing so. Some people who responded didn’t identify as having a CI/D, though they had witnessed the experiences of people with CI/D accessing permaculture events and demonstration sites. 2) Do you have examples of where accessing permaculture knowledge, demonstration sites and events have been adapted to the needs of someone with a chronic illness and/or disability? This might be your own needs, or someone else you have observed being supported well. Several people mentioned great examples of how their needs relating to CI/D had been met at a variety of permaculture events and sites. These included:
There were also a couple of examples of places that had easily accessible compost toilets. Some statements made were:
3) Have you, or anybody else you have witnessed, been unable to access permaculture knowledge and/or demonstration sites and/or events because of your chronic illness and/or disability? Some statements that reflect general themes were:
The attitudes of other people Many people have health conditions where their symptoms are variable. Some found that the lack of understanding about this meant that they felt uncomfortable and judged if they couldn’t join in with an activity when the previous day they had been able to. Some examples given were:
Physical space
Event activities
4) What changes could be made in order for you, or other people with chronic illness and/or disability, to be able to further access permaculture knowledge and/or demonstration sites and/or events? General themes One very common theme emerging from the reflections people shared with me is that permaculture should be about designing systems that showcase inclusivity.
Attitudes
Physical space
Activities
Designing solutions Although every person with CI/D is an individual with unique experiences and needs, there are some common symptoms, issues and requirements for many folk. The following easily accessible resources are some favourites of mine, and can help you to understand more about these. The Mighty – online community of support and awareness raising about disability, disease and mental health. Stickman Communications – communicating about disability with style and humour Chronic Illness Inclusion Project Permaculture, Chronic Illness, Neurodiversity and Disability Facebook group   Wheelchair Accessible Tree Bogs at Whistlewood Common - Photos by Anne Bramley (note - suitable uprights are still to be added to the handrails of the ramp) Suggestions to improve access to permaculture knowledge, events and demonstration sites in general in the permaculture community/movement (These suggestions are also available as a PDF here )
Top tips for permaculture events/courses facilitators and permaculture demonstration sites (These top tips are also available as a PDF here)
This article and its suggestions have been designed to act as a starting point for further discussions and design work around access to permaculture for people with chronic illness and/or disability. Over the next few weeks, I will also be recording a spoken-voice version of the article content for my planned YouTube channel. I openly welcome feedback and /or suggestions for further blog posts/articles. Feel free to contact me by email or via my social media platforms.
Book Review One of my visions/aims for this year is to increase my knowledge about herbs. How to grow them, preserve them and use them for treating illness and improving health and wellbeing. I became really inspired by the work of Jekka McVicar a few months ago when I listened to an episode of BBC Radio Four 's The Food Programme about her. And reading a book written by Jekka seemed a very obvious first step for me and my learning. Jekka's Complete Herb Book, published in association with the Royal Horticultural Society, is a beautiful work of reference. 150 different herbs are presented in two page spreads and include; the common names, various species, history, cultivation, propagation and harvesting. And then for each herb medicinal, culinary and wellbeing topics are detailed in a really accessible way.  Beautiful two page spread for each of the 150 herbs referenced. I've set myself a task of learning about a different herb each day, and it's already becoming a lovely and productive part of my mornings. The book also has sections on harvesting, preserving, making natural dyes common pests and diseases relating to herbs, a comprehensive yearly calendar and my big favourite...a gorgeous twelve page section on herb garden design, (including growing herbs in pots/containers).  Gorgeous herb garden designs I wholeheartedly recommend this book. I would say my knowledge about herb growing and use, is pretty patchy and fairly close to the beginner stage of understanding, application and confidence. Jekka's Complete Herb Book with its easy layout and stunning photos and illustrations already feels like it's going to be the ideal tool for my learning and my enjoyment of that learning. It's the kind of resource that would make a great present too. I've linked the book to the hugely dominating seller of all things online, but as ever, if you can, get your local bookshop to order a copy for you and know you've supported a business in your community where each sale matters.
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BlogWelcome to my new blog, born at the festival of Samhain 2018, the Pagan New Year. Here I aim to share regular everyday examples of how permaculture can provide healing and regeneration for ourselves, our communities and our planet. Search my Blog
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