What does it mean to live ecologically?

Or: Is your future accessible?

Or: Eco-shame is not a sustainable fuel source

What does it mean to live ecologically?
If I make a list and share it on twitter can I prove to you I’m living ecologically?

Am I living ecologically if eat seasonally and locally or only if I eat plant-based food sourced globally?
I put on the heating whenever I need it, but our supplier is Green. Is that living ecologically?

Should we all live off grid, and break off connectivity?

Can I offset the eco-shame of car-use with childlessness?
Does it offset the offset that my childessness is not something I chose for the sake of the planet?

Dock 10 points for eating animal products. 

Dock 5 points for living with a cat.

If I go to a protest to fight for the planet and clean up after myself using caustic chemicals, is that living ecologically?
If I stay home and save fuel, is that living ecologically?

What if I only stay home because of disability? Is that sustainable? Is this the Green Life?

To sit at home and grimace at the news is ecological.

To take the tv to recycling is ecological.

If I use environmentally-friendly cleaning products, on my own body and on the body of my dwelling place, is that living ecologically? Is it better to be dirty? To save water and electricity?

What if I use those products because I care about the planet, yes, but mostly because I care about my body? My body is a sensitive ecosystem. I am my own canary.
Dock 10 points for shedding scales of plastic medication packets. You can never be zero-waste.
Dock 5 points for not renouncing travel.
Dock 5 points for not believing in anthroporn.

Dock 20 points for not protesting enough.


Sometime way back in those heady days before we lived in a global pandemic, I got in an argument with a man I didn’t know on the socials. It started with a mutual friend sharing an article about car-free cities, and suggesting our own very mountainous, rural area adopt car-free policies.

Me: It’s worth considering that focusing on bikes as ideal travel excludes many disabled people, many people with illnesses causing pain & fatigue & people who simply cant ride a bike. It’s not a transport solution that can work for the masses especially in a landscape like ours.

Man On Internet:
Bikes/cycling is the only long term solution that can work for the masses in the Lakes. Other forms of access could be provided for the tiny minority unable to use them however with e-bikes/trikes, recumbants, tag alongs, trailors, tandems etc. most are catered for.

Me: I don’t class disabled people or people who can’t cycle for medical or other reasons as a ‘tiny minority’ and I’d love to see a full work up of how you’d expect to move people like me around with any of those suggestions on a daily basis without further marginalising us. #ableism

Man On Internet: As I said others forms of transport can be made available or those unable to use any of the forms bike based transport I suggested. For example expanding the current [tourist minibus] Service & even specialising it further to provide for those who need it.

Me: I really don’t understand how that’s going to help me get to the shops, the doctors, work, to meet friends? I don’t think you’ve thought this one through or talked to any disabled people.

Man On Internet: If fact your access would be vastly improved as the roads would no longer be clogged with vast numbers of unneccasry tourist motor vehicles, only those that geniunly need to be there like yourself.

Me: Who would decide who genuinely needs it? Who would police it – because there’s nothing folk like more than policing who is ‘genuinely’ disabled or not. Yes, bike access is great, and encouraging cycling is super, but it’s not a mass transport solution.

Man On Internet: Cycling is the perfect mass transport solution. Low enviromental impact, affordable, uses least amount of space/per person, good for health. It isn’t going to be suitable for everyone & there needs to be options for those who need them but it is the future of personal transport.

Me: Cycling can’t be a mass solution in an area like ours where people have to travel large distances for daily purposes, where it is very hilly, and has a lot of adverse weather. It’s not practical for the majority. Why not focus on decent public transport instead?

Man On Internet: All of the previous with the caveat that alternative options/facilities remain for those who need them like yourself. I’m not proposing a system which would isolate individuals who cannot cycle.

Me: Thanks for not listening to any of my opinions about this.


This is one iteration of an argument I have had countless times.
It’s not always about banning cars versus improving public transport.
Sometimes it’s about banning plastic straws versus disabled lives.
Sometimes it’s about banning bottled water versus ensuring access to drinking water.
I’ve had it countless times, this argument, mostly with well-meaning, good-hearted people who care deeply for the earth. But who don’t care to muddle their priorities by really listening to disabled people about their lived experiences. It’s too contradictory, too complicated.

I thought about disclosing my disability at this point to help you understand my position, but then I remembered no one should have to disclose their disability to have their needs understood. The person who is telling you their needs understands their own needs. Believe them.

Disability activist Annie Segarra coined the phrase ‘The Future is Accessible’ as ‘a call for visibility and intersectionality […] a call to prioritize equity and accessibility’. Yet the futures imagined by many environmental justice movements are futures which are definitely not accessible.

Like the zombie apocalypse, they are worlds I know I would not survive.

I wrote this piece two and a half years ago, for an online journal that has not yet launched. These are things I’ve thought about a lot during the pandemic. Especially that last sentence; most especially that last sentence. Sometimes in our house we replace words alluding to the pandemic with the words ‘Zombie Apocalypse’, to check how sensible the statements are. For example, ‘what we’re doing is trying to take a balanced and proportionate approach to the particular risk that seems to be posed by The Zombie Apocalypse’. For example, ‘we now have to move into a different period where we learn to live with the Zombie Apocalypse; we take precautions and we as individuals take personal responsibility’.

Many of us hoped the pandemic would create more understanding of illness; what it is like to live with limitation; more empathy for disabled people. But instead we watched as we were characterised as expendable, over and over again, on every news bulletin. Our lives were presented as acceptable losses.

And I find myself back in that looping argument again, even as the pandemic still rages on in the background, ignored by those who think they can afford to. There are so many ways to protect the earth that don’t also harm disabled people. Can we start to focus on those?

If your green utopia does not include disabled people and meet their needs, it is not a utopia, it is a dystopia. And I, for one, have had enough of a taste of that.

Let’s Just Survive: A Covid-Christmas Playlist

Back a million years ago in the year 2008 I had a bit of a sad Christmas. There were no terrible reasons for it, I just couldn’t find much Christmas Spirit in myself or the world. I was lonely, and felt a bit useless, like I was failing at everything. As I often do, I found some solace in music. Not in happy songs to cheer me up, but sad songs to normalise not being happy.

If I’m feeling sad or lonely or heavy with despair at the state of the world or my life it’s always art that reflects that that I turn to. I need sad songs in my sadness; lonely songs in my loneliness. I know not everyone works like this. Sad songs make me feel less alone in my sadness – they remind me that though my problems may be particular to me the emotions I am feeling are far from unique. Maybe I need to go into the darkness to come out of it. Maybe it’s a musical preference – I always preferred the carols in a minor or modal key. Maybe it’s just that I can’t bear enforced cheerfulness – there is nothing more likely to make me feel miserable than being told to be happy. This can make Christmas difficult – isn’t it the season of jollity? Of goodwill? What if your goodwill well has run dry?

In 2008 I made a Christmas Meltdown playlist and I played it over and over, and it helped. It gave me an everlasting love for those particular songs.

In 2009 I picked a few of my favourites from it and made an advent CD and sent it to my friends. They’re not all downbeat (some are quite jingly and jangly and jolly) but they’re all about loss or longing in some way, about the imperfectness of real Christmasses in a way I found and still find comfort in.

I think this was the playlist (though I don’t think this is the right order – I found a copy of the liner sheet I made a couple of years ago then lost it again, and my itunes garbled it). I do remember ‘December’ was a pre-advent treat; ‘Ipod Xmas’ had to be on the tenth because it’s in the song (‘you left on the tenth of December’); ‘Wintersong’ for Christmas morning etc. I added ‘Famous Blue Raincoat’ for post-Christmas come-down, but I think that was the following year.

December by Regina Spektor
December Will Be Magic Again by Kate Bush
Christmas is Coming Soon by Blitzen Trapper
Why Can’t it Be Christmastime All Year? by Rosie Thomas
Maybe This Christmas by Ron Sexsmith
Calling on Mary by Aimee Mann
All That I Want by The Weepies
The Christmas Sound by The Swimmers
River Joni Mitchell
Here it is, Christmas by The Old 97s
Ipod Xmas by Hello Saferide
Christmastime is Here Again by The Flirtations
Gee Whiz, It’s Christmas by Carla Thomas
Lo, How a Rose ere Blooming by Feist
Christmas Wish Book by The Fentones
Xmas Curtain by My Morning Jacket
Donna and Blitzen by Badly Drawn Boy
Listening to Otis Reading at Home During Christmas by Okkervil River
Christmas (Baby Please Come Home) by Darlene Lowe
It’s Christmas So We’ll Stop by Frightened Rabbit
Sister Winter by Sufjan Stevens
Hey, Santa Claus by The Moonglows
The Christmas Song by The Raveonettes
Christmas by Rogue Wave
Xmas Cake by Rilo Kiley
Christmas Eve by Gorky’s Zygotic Mynci
Wintersong by Sarah McLachlan
That was the worst Christmas ever! by Sufjan Stevens

Every year at least one of them tells me they’ve been listening to it again.

Last year I wanted to make a ten-year anniversary edition but I couldn’t work out how to do it easily, how to share songs now I don’t burn CDs for people, but without having to make anyone sign up to an app or something. And I gave up.

But this year I’ve been thinking of a Corona Christmas playlist: one about togetherness and not-togetherness, about surviving another year, about muddling through somehow. This is my Covid-Christmas Survival Playlist.

If you like this selection, you might want to check out the great Leather Canary Xmas Mixes, and Line of Best Fit’s Ho Ho Ho Canada albums. They’re on their 12th edition in 2020 so there is a lot of back catalogue, all available to download for free.

1. I began December with ‘This Winter I Retire’ by Said the Whale as a constant earworm. There’s no snow here, but it certainly feels like a long cold December. A mighty-cold getting-old-quick one. I hope it’s not a make-you-sick one.

2. Home for the Holidays by Emmy the Great and Tim Wheeler

This song was already full of bittersweet nostalgia for me when I first heard it – it makes me think of that bit in your early 20s, when everyone you knew at school has moved away from home, but not settled into their adult lives, so still comes home for Christmas – and I was past that stage. For most of us, there’s no going home this year, whether we want to or not, so it’s especially poignant this year. Did you ever make it out of here?

3. Carry Me Home by Hey Rossetta

This is one about not being at home at Christmas, and wishing you were.

4. Winter Eclipse by Beta Radio

This song takes us from Solstice to Christmas. This year we got a Great Conjunction instead of an eclipse on the Solstice of course.

5. Through December by Laura Veirs

For when all you’ve got is this old guitar to get you through December.

6. The Longest Night of the Year by Mary Chapin Carpenter

This is really a solstice song of course, but this year has felt a bit like one long night, and not in a great party kind of way. It’s a tad schmaltzy, but sometimes it’s good to be reminded:
Keep me safe and hold me tight,
Let the candle burn all night,
Tomorrow welcome back the light.

7. A Change At Christmas by The Flaming Lips

Can you imagine if mankind did actually reveal its truest potential, and if there was widespread sympathy for the suffering? That is a change I would like to see. I don’t know how we’ll get through it without.

8. Sometimes You Have To Work On Christmas (Sometimes) by Harvey Danger

‘I’m working for a holiday wage/My family is two time zones away’ … The version I own of this is by The Long Winters, from a charity Christmas album Peace on Earth. I hadn’t realised it was a cover of a Harvey Danger song (it makes sense – there are band links). It’s a great narrative song, and I love the details in the lyrics and the half-rhymes. We don’t all get a day off to spend with family. Even if we did, we might not be able to be with them. For more thoughts on sad songs at Christmas read this interview with The Long Winters’ John Roderick.

9. Half Price by Jim Bryson (featuring Amanda Rheaume)

On the other hand, no sales shopping this year for those of us keeping away from other people, or under severe restrictions. Also a shout out for those who won’t go back to college, and all those who know what it’s like to run out of gas and light, or run out of fight.

10. I’m Coming Home (this Christmas) by Jim Guthrie

Another one about wanting to be home at Christmas. Okay, so it’s unlikely for most of us in 2020. Try changing the lyrics to ‘I’m coming home next Christmas’ and it works better.

11. Last Winter by Tony Dekker

This is a cover of a song by The Burning Hell about a terrible ice storm a few years ago. It’s a different kind of lockdown they’re having in the song, but it resonates differently now when they sing ‘there’s no need to ever go outside if we make the right decisions now’. Not strictly a Christmas song, but a winter song – it’s on both my Christmas playlist and my Songs for Long Dark Nights list.

12. Talking of which, I have to squeeze ‘Gonna make it through this year’ by Dekker’s band The Great Lake Swimmers in here, though again, more of a winter song than a Christmas song. Never have the lyrics felt more pertinent.

13. Let the Snow Fall by Andrew and the North American Grizzly

This one embraces being snowed in with a loved one, incase you need cheering up at this point.

14. Downtown Christmas Eve by Jenn Grant

This has a bit of the wishful longingness of the original recording of ‘Have Yourself a Merry Little Christmas’ for me. There’s a promise of future togetherness. You might shed a tear, but it will be a hopeful tear (I hope). It’s like a musical hug.

15. It’s Christmas Time (let’s just survive) by Kathleen Edwards

Released Christmas 2019. It’s about surviving in a different way than we might be thinking of this year, but the chorus holds tight: it’s Christmas time, let’s just survive.

16. Calling on Mary by Aimee Mann

I know this was on my original advent list, but I keep coming back to it as my favourite song about being alone at Christmas, and I felt like it had to be here too. A lot of people will be feeling like comfort isn’t possible this year. At my lowest at Christmas somehow singing along to this really lifted me.

17. Everyday will be like a holiday by William Bell

Christmas is a state of mind, not just a day, isn’t it? Maybe everyday can be like a holiday, if we can be together again. Here’s to other years, other days. Nothing has to be ruined. We’re going to make it through, and some day will find us just were we are meant to be. Let’s keep going till then x

#SuckItAbleism / On Not Going Plastic-Free

There is currently a campaign running to seek Plastic Free Community status for Grasmere, the village in the English Lake District where I live.

The campaign largely follows the guidelines laid out by Surfers against Sewage, who have an accreditation scheme which asks communities to aim for 5 objectives:

  1. Establish a steering group
  2. Have the local council declare a resolution to support the campaign
  3. Inspire the wider community to engage with the plastic-free message
  4. Hold plastic-free rallies such as clean-ups
  5. Work with local businesses to help them reduce single-use plastics

On the whole, I’m totally in support of any movement to reduce waste, and especially to address the amount of rubbish which ends up in our hedgerows and water systems. The Lake District is strewn with dog poo bags, empty cans and bottles, and abandoned fishing tackle, all of which are hazardous to wildlife, human life and the entire ecosystem.

However, I am wary of anything that calls for a total ban on single-use plastics, not least because of the links between plastic-free campaigns and the banning of plastic straws.

A lot has already been written about how straw bans negatively impact disabled people’s ability to be socially independent and endanger disabled lives, but it seems many people still don’t know the facts.

I love this infographic by neurodiversitylibrary.org, which is both cute and to the point. The fundamental message is clear:

You don’t need to hurt disabled people to show that you love the earth. 

This infographic shows a drawing of a pink/purple narwhal, a bendy straw, three question marks, and an image of the globe. The text says, “How do plastic straw bans hurt disabled people? Many disabled people need plastic straws to eat and drink. It provides access and they are literally keeping some of us alive! We don’t hate the earth, but we really like being alive and able to access our communities!” This text is followed by bullet points saying, Paper and biodegradable straws break down faster than many of us can use them. Metal straws can cause injury if they are too hot or cold and also if the person has a disability that affects movement and motor skills. Reusable straws are great if you have the ability to wash, store and bring them with you every time you leave your house. Many disabled people do not. If you don’t need a plastic straw, then don’t use one, but you don’t need to hurt disabled people to show that you love the earth. Punishing disabled people who need plastic straws to live will have very little impact on the environment but looking into creating a more viable and ACCESSIBLE alternative to single use plastic and placing greater regulations on businesses that are polluting the earth on a much larger, much more dangerous scale sure would! At the bottom of the infographic is the web link (not clickable in the infographic) for neurodiversitylibrary.org ”How Poorly Considered Straw Bans Hurt Disabled People

This chart made by @rollwthepunches shows the problems with alternatives to plastic straws, and that none of them are safe for the masses:

This is an image of a spreadsheet chart entitled “Just use blank fill in the word space straws.” Along the left side there is column listing materials straws may be made out of. Across the top row are columns titled each with a barrier or problem. Each category of straw material has an x in the column of barrier depending on which barrier is relevant to that material. Metal straws have allergy risk, injury risk, not positionable, not hot liquid safe, hard to sanitize, and high cost marked as barriers. Paper straws have allergy risk, chocking hazard, not positionable, not hot liquid safe, and dissolve with long use marked as barriers. Glass straws have injury risk, not positionable, hard to sanitize, and high cost marked as barriers. Silicone straws have allergy risk, not positionable, hard to sanitize, and high cost marked as barriers. Acrylic straws have allergy risk, injury risk, not positionable, not hot liquid safe, hard to sanitize, and high cost marked as barriers. Pasta or rice straws have allergy risk, chocking hazard, injury risk, not positionable, not hot liquid safe, and dissolve with long use marked as barriers. Bamboo straws have allergy risk, injury risk, not positionable, and high cost marked as barriers. Biodegradable straws have allergy risk, choking hazard, not hot liquid safe, and dissolve with long use marked as barriers. Single use straws are have no barriers marked. Undearneath the chart is a text that reads “Many disabled individuals require straws for foods, meds, and to be social with friends. We can ALL reduce plastic use, but banning items many depend on harms a very vulnerable population. Pressure companies to make safe alternatives available to all and reduce waste in larger ways. Hurt turtles are devastating. So are children and adults aspirating liquid into their lungs.” At the very bottom it is signed by “Hell on Wheels” with a burning yellow flame in front and the blue icon of a wheelchair stick figure at the end.

These dangers can no longer in any way be dismissed as hypothetical, after the death of Elena Struthers-Gardner when she fell on a metal straw.

Many outlets have already switched to using paper straws here in the UK, even though a ban on plastic straws is not yet in place. 

Did you know that many biodegradable, compostable and paper straws contain common allergens in their glue and their coatings, including gluten? 

I didn’t, although my stomach and bathroom have become quite familiar with it in recent months. Because straws aren’t considered a food stuff, their allergen content does not need to be listed, which is pretty terrifying for anyone with an auto-immunue condition like Coeliac disease, an intolerance or an allergy. A paper straw in a cafe could be a death sentence for a customer who has anaphylactic reactions to an unlisted ingredient. No one should have to worry about that.

Having plastic straws only available on request to disabled people is also not a solution. It forces people to disclose their disability under intimidating circumstances, to untrained adjudicators. People working in cafes and restaurants shouldn’t have to decide whether someone is deserving of a straw. 

We live in a society that isn’t very understanding of disability. Under the hashtag #SuckItAbleism  – coined by Alice Wong – you can read some of the deeply distressing accounts of disabled people in places where straws have already been banned who have been refused them by servers in restaurants and cafes because they ‘don’t look disabled’, or who have been harassed and bullied for asking for them.

If you are still thinking but surely saving the world is more important than a few disabled people’s social lives, think again …

Banning plastic straws is already harming disabled people whilst simultaneously not saving the earth.

The recent fact check by Channel 4 news shows that the proposed straw ban in the UK is based on made up data, and not on evidence. Plastic straws have been found to make up a miniscule proportion of ocean waste.

Globally, straws only make up around 0.00002 per cent of all marine plastic pollution.

If you want to make a real difference, target something that isn’t an accessibility aid but does contribute substantially to pollution.

Is it more important to appear to be saving the environment, or to actually help to protect the lives and independence of disabled people?

This is a call for environmental campaigners everywhere to join with disabled people in saying #SuckItAbleism.


Some helpful resources to read and share:

This blog post by Shona Louise gathers information from many sources and demonstrates how alternatives to plastic straws are not suitable for many disabled people: http://www.shonalouise.com/2018/11/the-plastic-straw-ban-how-it-harms.html

As does this article by disabled environmentalist Penny Pepper: https://www.theguardian.com/commentisfree/2018/jul/09/disabled-person-plastic-straws-baby-wipes

There is a really good, clear interview about why some people need straws and some of the alternatives here: https://www.bbc.co.uk/news/disability-48107572




The infographics I’ve used are gathered here:





2018 Digest

2018 was my first full calendar year of freelancing, an implausible dream when I decided, after my academic contract ended in August 2017, to try it for six months and see how far I could get. Just before the close of 2017 I found out I’d been chosen as one of the writers to be mentored in the second year of Penguin Random House’s WriteNow programme, to help me work on a prose book about living with chronic illness. I began the year thinking that I’d just concentrate on trying to write the book, but it filled up in unexpected, lovely ways, and turned into a year of readings, discussions, and workshops, of meeting new people and catching up with old friends.

This is a brief digest of the year and what it held for me, where it took me to.

My year began with a series of needle biopsies of an awkward but apparently unimportant nodule in my thyroid, which wasn’t the most pleasant start, but improved with a trip to Aberdeen to meet members of the Aberdeen University Swing Dance Society and write a poem about them, for a project co-organised by Voluntary Arts Scotland and the Scottish Poetry Library. Dance was one of my great loves as a child, but also one of the first things I was forced to give up because of joint problems when I was still in primary school. I was worried in lots of nebulous ways about this trip and the commission. Could I even do it? Would it be too upsetting? But the group were amazing. I learnt dance steps, a lot about why dance is important to people, didn’t pay too much for it, and got the beginnings of the poem stepped out during the trip.

AM1_3067 (1).jpg
At Aberdeen University Swing Dance Society (photo by Adam MacMaster)

February was the month I lived in a library. I wrote a short account of the month for the Gladstone’s Library blog which I hope gives some sense of what a disconcerting, productive and social time it was. It was the first time I’ve become emotionally attached to a desk, and I still daydream about my corner in the library. The residency also gave a validation to my gamble on forgoing regular paid work to give more energy to writing. On the way to Hawarden I stopped off at Lancaster Royal Infirmary to have my first venesection for a while, after a problem communicating with my consultant. Not the normal way to begin a residency, but it was at least on topic for what I was writing about when I was there.

Early March always means StAnza to me now, and it was a delight to be there for the whole festival, and reading from Basic Nest Architecture. Some of us even dipped in the sea at castle rock (literally a dip for me – far too cold to put shoulders in safely) which in over twenty years of visiting is the first time I’ve more than paddled there.

The following weekend I raced against the mini-Beast-from-the-East to get to Leeds for my event with Zaffar Kunial at Wildlines festival. The snow fell thickly as we sat in Leeds Library discussing poetry and the world around us. It was amazing to come out to find a deep swathe of it over the city.

The next week held the first big London meet up for WriteNow, which was both encouraging and slightly terrifying. By the time I caught the train home I realised I had a kidney infection, which had been building up since StAnza, and would take the rest of the Spring to get over properly.

I was kept busy with the first couple of my Read Regional readings (Hebden Bridge and Hartlepool Libraries), and finalising the text for my new pamphlet, With Invisible Rain. I had another venesection which finally brought me properly into ‘maintenance’, the zone where our iron stores are considered low enough to need monitoring, not constant treatment. I would only need one more this year, in July, to keep my levels low.

May held another Read Regional reading (Hexham Book Festival), a delayed and long-awaited trip to London to see Hamilton, and the launch of With Invisible Rain (New Walk) at Five Leaves Books in Nottingham.

May is always one of my favourite times of year in the Lakes. Bluebell season, the first warmer swimming days. This May two of my favourite swimming companions visited at the same time, just as the weather started to turn hot, to coincide with the Pavilion Poets reading at The Wordsworth Trust.

I was back in Nottingham again at the end of the month for a conference, at which I gave a paper about environmental writing, ecopoetry and ableism for the first time. I started to have B12 injections and realised how much my low B12 levels as a teenagers must have contributed to my fatigue and deep lethargy. They don’t by any means take away the pain and fatigue, but they do reduce it, and it’s impact. The frustration I felt thinking about how much difference it would have made to me back in 1997 was counterbalanced by the relief at finding something that does actually help.

June began with my last Read Regional event (Keighley), continued with some schools workshops around Cumbria for National Writing Day and a talk at Keswick Mountain Festival about disability and outdoor writing for Waymaking, and ended with a trip to Vancouver Island for the biennial ALECC conference.

We squeezed in a few days at the end of the conference on Salt Spring Island, where we had stayed in a cabin next to a lake, surrounded by Hummingbirds. It was genuinely magical and I can’t stop thinking about it, about those hummingbirds, about how amazing it would be to have time to sit at a table like that with them flitting about you and just write.

On the way home we had to dash between ferries with our cases and I pulled something out in my elbow which didn’t click back into place for two and a half weeks, during which time I couldn’t straighten it properly, incase you thought I was having too much fun.

We came back to the beginnings of the infamous heat wave, and a request that I step in and run a workshop for the Rural Writing Institute, after the programmed poet had to pull out for personal reasons. This turned into a real highlight of the year. I spent the day on the farm with the participants and came away so full of ideas and passion.

I also began working with the Wordsworth Trust’s Outreach programme, running a workshop with West Cumbria Carers. To prepare, I joined in on one of their Poetry and Paint workshops run by Cumbrian artist Alison Critchlow: a whole Saturday once a month of experimenting with ink and paint. Getting to know the group, and being given the space to do something creative that wasn’t work, made this one of the highlights of my year too.

I had set aside July as a writing month, knowing I didn’t have much paid work booked in, and hoping I could get a first draft of my nonfiction book finished. The first half of the month was scorching – two full weeks of blue skies. It was hot couldn’t drink my coffee unless I iced it. It was even hot in the house. I swam through clouds of damselflies. I know the heat wave had devastating effects for some animal and insect populations, but in Grasmere everything seemed to thrive. I’ve never seen so many insects, including this blue which I’ve not seen here before.

Inevitably, it took me twice as long to finish my draft (like any building project), and I sent it off to my mentor at the beginning of September. But I did it – 74, 000 words at that point.

Meanwhile, the rains had started, I’d spent my birthday driving to Stirling to meet with a scientist, Blaise Martay, who I was collaborating with for the Magma Climate Change issue, done a guest reading at the delightful Garsdale Retreat and caught up with my old friend Rhian Edwards in the first time in a decade, and gone back up to St. Andrews for a family gathering. I took myself off to Spain and wrote 12, 000 words in a week and went almost entirely nocturnal. I came back to find I’d received a grant from the Society of Authors to help me finish the book, which would allow me to go on some research trips, and also support me over the coming months.

Breaking the journey back from Stirling at Linlithgow

September began with Kendal Poetry Festival, followed by a visit by Jackie Morris to Grasmere, which was another implausible joy. I bought a wetsuit in the sales with the determination to swim all winter. I took on the design and teaching of a Creative Nonfiction course at Cumbria University, and Will and I went back to Canada to follow up with some author and publisher interviews in Toronto, and for a conference he was speaking at in Ottawa. We managed to get to Toronto just in time for Word on the Street, and I was so impressed by such a large literary festival, with author talks and readings, and craft talks, all free to attend.

At the beginning of October we had Whitney Brown in Grasmere reading from her memoir Between Stone and Sky, and I got to interview James Rebanks on stage at Borderlines book festival as a last minute stand-in for Hunter Davies, when he was taken ill.


The following weekend held the Edinburgh launch of Spark: Poetry and Arts Inspired by the Novels of Muriel Spark, one of several anthologies I was really proud to have work in this year.

Then on the 20th I travelled over to Stockton to perform a piece on in/visibility, disability and shadow portraits for the Deranged Poetesses series run by Apples and Snakes North, on Crones.

Before the end of October I managed to squeeze in my research trip to Rathlin Island and the Antrim Coast – my Haemochromatosis road trip – following the trail of ancient holders of the same mutations that make me overload my body with iron. It was a stormy week, and I ended up with the B&B to myself on Rathlin for two days when my hosts couldn’t make the crossing. Visiting in October meant that for those two days, I seemed to be the only tourist on the island. When I walked to Rue Point to see the seals I passed no other human on the road or the paths. I’d like to go back in Puffin season and see Rathlin busy and bustling, and get a glimpse of the fabulous birds, but I know I’ll miss being the only person on the path.

Dark Hedges

Travelling by yourself with chronic illnesses is always a bit frightening – what if something goes wrong? What if I need help or can’t get home? I took things slowly and factored in rest time, and was lucky that nothing went awry. I kept wondering why I hadn’t done this journey before – it was so easy to drive through Dumfries and Galloway to get the ferry – and the coast was so beautiful – then reminded myself. I was only able to do it because of the grant I’d received. The ferry crossing was convenient and simple, but astoundingly expensive, especially when compared to the crossings we’d taken in BC earlier in the year. I was left baffled as to how people who have to commute regularly manage it. It was a privilege in many ways to make the trip.

November was another month of schools workshops and literature festivals, beginning with  Poetry in Aldeburgh (after which I was lucky enough to get to swim in Emily Hasler’s beloved river with her), via a research trip to Creswell Crags, then a trip to London for another WriteNow meet up, a reading in Grasmere by prize-winning local novelist Amy Arnold, launches of the new Cumbrian poetry anthology This Place I Know and the Waymaking anthology at Kendal Mountain Festival, and the new Beautiful Dragons anthology Watch the Birdie, culminating in a poetry reading at Bookcase in Hebden Bridge.

December followed on in a similar pattern, with schools workshops and reading events, including a visit to talk to Creative Writing students at Leicester University, and a guest slot on Radio Cumbria’s Arty Show. We came to the end of the first full year of the ‘Discover Poetry’ reading group, which runs once a month in Dove Cottage. I finally managed to see orthopaedics about a problem with my left foot I’ve had since breaking my toe last year, which means that January will once again be a month of needles and further tests, but we made it through (if it’s not tempting fate to say it too soon). There we are – or here we are – another year over.

I’ve written the first draft of a difficult prose book, a great deal towards a second poetry collection, published a pamphlet I didn’t think anyone would consider, and got better at talking openly about things I’m afraid people might not want to hear. In doing so, I’ve found communities and kindness I’m unspeakably grateful for, and I’m going into the next year a little less afraid.


Test your metal

June 4-10th 2018 is World Haemochromatosis Awareness Week. 

Haemochromatosis is the (slightly misleading) name for Iron Overload, whereby iron builds up in the body to toxic levels, and is stored in the organs, leading to long-term and eventually irreversible damage.

The genetic form – known in the UK as Genetic Haemochromatosis (GH) and elsewhere as Hereditary H[a]emochromatosis (HH) – is caused by a number of genetic mutations, which have a prevalence in the UK of around 1 in 200 people. That’s pretty common for something most people have never heard of.

If you read the title of this post and thought ‘she’s got her metals and mettles muddled’, two things:

  1. It’s a pun, and an instruction. You don’t have to like it, but you do have to think about it.
  2. Metal and Mettle were once variant spellings for the same thing, it’s just we began to separate their usage: ‘metal’ to refer to the non-human material, ‘mettle’ to refer to the human, your character, what you are made of.

    But what if testing your metal is also testing your mettle? Do you know what you’re made of?

    I used to think I did, as much as we ever do, but then I found out I’m stacked full of metal which shouldn’t be there. I’m like a human scrap yard, full of rusting machinery, slowly poisoning the land and water.

One of the things I’m trying to do since my long-delayed diagnosis with Haemochromatosis in 2016 is talk about it as often as I can, as well as writing about it. My hope is that the more people know about it, the fewer will have to wait years for a diagnosis like I did, and the greater understanding there will be of the condition both by the general public and by medical professionals.

A lot of the barriers to diagnosis at the moment in UK actually centre around lack of information for medical professionals: not realising how common it is, the many various and vague ways in which it can show itself symptomatically, the fact it doesn’t just effect older people and post-menopausal women as has long been taught, but people of all ages. The fact it is not just a ‘liver disease’ but can affect any or every organ. The blood markers are raised ferritin levels and/or raised transferrin saturation – two of the many different ways of measuring iron levels in the body – neither of which are tested routinely in the UK. If they are tested, the results are often not understood as indicating GH, especially in the early stages of loading.

So much emphasis is put on making sure you keep iron levels up to avoid iron-deficient anaemia, that very little thought is given to Iron Overload, and that the symptoms – pain and fatigue – might look very similar on the surface, and also look like a lot of other conditions. In some ways, GH is a chameleon condition – because it can affect any and all of the body’s workings, it can show itself in many strange and different ways that  look baffling to most doctors. If you come in with itchy skin, an unseasonable tan, fatigue, mood changes, a sore toe, and absent periods or erectile dysfunction, and no apparent abnormalities in your test results, what average GP is going to put that together and say “aha! GH!” My hope is that in the future, this will be something every GP considers when they are presented with a patient who has multiple seemingly unconnected symptoms.

The lack of awareness of GH and its presentation is one of the many reasons I find the guidance and push towards using Medically Unexplained Symptoms as a ‘diagnosis’ deeply dangerous. You have to be absolutely 100% sure you’ve asked all the right questions if you’re going to sign people’s lives away under ‘no answer’.

At the moment I’m working on non-fiction book under the Penguin Random House WriteNow scheme which explores living with chronic conditions and chronic pain, reflecting on my experiences of living with hEDS and GH, both pre and post diagnosis.

I’ve also been experimenting with different ways to explore chronic illness in my poetry, especially ways to talk about pain and the repetition involved in chronicity. My new pamphlet With Invisible Rain shows some of the ways I’ve been tackling about it, and I hope a lot of this will feed into my second collection.


With Invisible Rain includes three poems from a sequence I’ve been working on called ‘v/s’, which is the shorthand for venesection: the opening of the vein to, in this case, take blood.

In order to get rid of our excess iron, people with GH have to have pints of blood taken out. It is the only treatment for GH, and essential to save us from further problems down the line. The idea is that this makes our body release the iron stored in our organs to make new red blood cells. In some cases it can reverse organ damage if done early enough.

It can be a long and arduous process. Some people feel fine after venesection, others feel really ill and take days to recover. Some people get their pints out weekly, or even twice a week. I got mine taken monthly, because my recovery time was slow due to the autonomic dysfunction I have as a co-morbidity with EDS, including PoTS. This is treated by trying to keep blood volume as high as possible, as well as changing activities to avoid blood-pooling (eg. not standing still, not showering, especially in the morning, doing counter-manoeuvres like pumping your calf-muscles when you go from lying to sitting to standing). Mostly this means drinking a lot of water and eating a lot of salt, so you can see why having regular pints of blood taken out is a problem. I spend all this time trying to put liquid in, and they take out a huge chunk – probably 1/9th of my total blood volume – all at once. After the first horrific month, where my autonomic symptoms were back to the worst they were pre-diagnosis, I started having a pint of saline put in one arm as the blood comes out the other. This doesn’t erase the problem, but it helps.

I finally reached ‘maintenance’ – the state where the iron is low enough to just keep an eye on, or ‘maintain’ – in April, over two years after I started venesection. Now I get to see how quickly I reload, and if any symptoms vanish or change.

Two of my ‘v/s’ poems have been published this month in Gush: Menstrual Manifestos for Our Times from Frontenac Press in Canada, and one was on And Other Poems last year, so they’re getting out there.

My GH was picked up during a run of tests by the gastroenterologist I saw when I was first diagnosed with EDS. Without her, I still wouldn’t know. I’d still be getting sicker and sicker and not know why; would still, most likely, be being told that it was nothing, or not real, or that I was imagining it all or creating it myself through my patterns of thought or behaviour. This is how many people with multi-systemic conditions are treated, and women, and especially women from black or ethnic minorities, queer women and trans women are even more likely to be dismissed as creating or imagining their symptoms. There are some excellent books about how gendered  (and racist and classist) these responses can be coming out of the states at the moment, and I’d recommend reading:

Michele Lent Hirsch’s Invisible 

Maya Dusenbery’s Doing Harm

Abby Norman’s Ask Me About My Uterus 

Porochista Khakpour’s Sick

This is my plea to you for World Haemochromatosis Week.

If you think something is wrong, trust yourself. You know your body. Keep asking. Keep questioning. Don’t take ‘medically unexplained’ as an answer. It’s not an answer. It’s a muzzle. It’s state-sanctioned gaslighting.

If you’re a medical professional and you have patients you’d class as experiencing Medically Unexplained Symptoms … don’t. Look harder. What are you missing? I’m sorry, but you are missing something. Think outside your biases and your teaching. Keep learning. Don’t be afraid to admit you don’t know. Don’t give up on your patients. They need you to believe in them. Your belief will save lives.

Diagnosis matters.

Pass it on.

And test your metal/mettle.