Feeding tube hacks!

I have a PEG feeding tube and it has given me my life back, but it isn’t problem free. I’ve written about tips before but of course I’m always learning new things so I wanted to do another post.

Storage

You can end up with a lot of equipment – bags of feed and water, syringes, tubing – and you may not want to pile boxes up in the corner of your bedroom or lounge…

I have a set of beautiful wooden drawers that store my smaller bits and pieces such as the syringes and spare parts. In a kitchen cupboard we store tubing and a week or so of feed and water bags, the rest of which we keep on a bookcase and in the hall cupboard. I like to have nice storage as it makes my flat feel less medical but talking of which…

Medication

We have two peg baskets, one for morning medication and one for evening medication, the points in the day when I have most medication.

I discussed how I use a pestle and mortar, tea strainer and medicine pots in my previous post so I won’t expain that again. One addition is a small tea tray that we use to carry the prepared medication from the kitchen to wherever I am in the flat. An alteration we have made is that when we leave the house, we no longer use the soup cups to take flush water as they started to leak a lot. Now we use small kids drink bottle, if you’re looking to find something, think about having a wide neck so that you can get to the water more easily.

Bits and bobs

Since my last post, my PEG has been changed and has a little more discharge than it used to so I have started using tubie pads from etsy. I also forgot to mention the value of pliers! Every so often the giving tubes get stuck to the PEG and pliers will come to your rescue. Make sure you take them with you when you go away as that will certainly be the time it gets stuck.

Having had some leaks overnight, I’m grateful that I have an easy to wash rug beside my bed.

If you are prone to hospital trips then a go bag should include feed and ephemera, don’t assume the hospital will have your feed in stock or be able to get it easily. Also, take medication with you.

Bags and more

I have seen some tubies using rucksacks designed for hydration as they often have an internal loop to attach the feed bag to and a channel for the tubing to get from inside to outside. I’m wondering if the headphone port on many bags could also be used.

I have also come across, but not tried, the free arm which looks like it could be used to attach a feed set up to a wheelchair, table or other structure.

I have recently had to extend the amount of time I am hooked up to the pump and in lockdown that has been fine but once I re-enter the world, we are going to need a way of taking the pump and water out too.

As I already have a specific wheelchair bag that fits all my stuff in, I didn’t want to go down the rucksack route. I do also have a bag designed for the pump and feed but it is boring and black, and the way its designed means the tube kinks a lot and causes errors.

So, after a bit of thought and experimenting, I discovered that the pump attaches onto a tripod. Specifically, a Joby Gorillapod.

Nutricia florcare Infinity pump attached to a Joby Gorillapod
Nutricia Flocare Infinity pump attached to electric wheelchair handle with the Joby Gorillapod
Nutricia Flocare Infinity pump attached to electric wheelchair handle with the Joby Gorillapod and the water bottle hooked onto the wheelchair headrest

The longer term plan is to get a caribiner hook to attach the water/feed bag, the photo was just us trialling the idea.

Please share your own tips and tricks below!

Disability Pride Month

Over on instagram I’ve been seeing a lot of posts about Disability Pride Month and from what I can tell, it came out of America and July was chosen as it was the month the American’s with Disabilities Act was passed.

As such, I thought I would make a more conscious effort to focus on disability this month. Anyone who has looked at my blog for long will realise that I cover a number of topics, it’s all a bit of a mish mash and there is no real schedule about when I post and what I post about!

I have a few ideas for some posts but in the meantime, have a dig into some of the posts you might have missed…

If you have a topic about disability that you’d like me to look at, please leave a message in the comments. Similarly, if you have a question you’d like to ask me about disability, this month is your opportunity. Use the comments or email me if you’d prefer. This is your chance to ask me anything. I am not promising I will answer everything but I am happy to be asked!

China’s One Child Policy

Warning: talks about abortion, human trafficking and forced sterilisation

China’s one child policy was in place between 1979 and 2015 and, as the name suggests, it was about limiting families to having one child.  There were exceptions, for example ethnic minorities were not subject to the policy and in the 1980s, a change meant that rural families could have a second child if their first was a girl.  If both parents were only children, then they themselves could have two children.  At some point, it was also possible to apply for permission for a second child if the first had a disability. 

In 2013, there was a partial relaxation that meant if one parent was an only child, the couple could have two children.

In 2015, China announced that every family now had the right to 2 children.

“The policy has in one way or another affected the life of every single person in China – which is every fifth person on the planet.”
– Mari Manninen

It is likely one of the most extreme and controversial birth control policy that humanity has seen. 

So why did it come into being?

Controlling population growth was thought to be the key to increasing economic prosperity and standard of living.  In 1957, Mao Zedong said:

“Our country has so many people, which no country in the world can compare with.  It would be better to have fewer births.  (Re)production needs to be planned.  In my view, humankind is completely incapable of managing itself.”

By the mid 1960s, China had developed its own version of the contraceptive pill and had “expanded the national distribution and propaganda network devoted to promoting birth control” (Whyte, Feng & Cai).

Across the globe, during the 1960s and 1970s, there was concern about population increases and by the late 70s, China’s population was approaching one billion.  To tackle this, in the 1970s, a campaign was established to reduce the population and it had the slogan ‘later, longer, fewer’; get married later, wait longer between children and have fewer children.  This campaign came with heavy coercion and enforcement and in the 70s the average number of children per family dropped from almost six to under three.  By 1979 the one child policy was officially introduced.

Before we look at how the policy was enforced, I think we need to consider gender. 

UN statistics say that China has over 60 million missing girls, girls who should have been born or shouldn’t have died as children.  Research carried out in rural China in 2000 showed that if a family had a boy and was pregnant again, 40% had an ultrasound the second time round.  If the first child had been a girl, that leapt to 70%.  However, this leaning towards boys precedes the one child policy; killing baby girls wasn’t uncommon in the 1930s and 40s but had since decreased, until the 1980s.

There is a myth that Chinese parents only wanted boys but it’s not so clear cut and it’s important to take into account cultural expectations for each gender.  Men are the ones who would be expected to support their aging parents and alongside the introduction of the one-child policy, what little health care and elder services there were for farmers, were slashed, making it even more important to have a boy.  Further if you only have so much food, you had to prioritise which children would get it.  Think about children as an investment in your future.

This seems horrific and brutal but reflects the traditions of the culture – men would carry out the heavy work on the farm, they were the ones who’d earn money and help to secure the family, they were the ones who carried on the family line and it is the men who make the offerings for the ancestors. 

Families did still want girls but it seems to be as well as a boy, rather than instead of.

Of course, for any policy such as this to be successful, enforcement is crucial.  As we’ve already noted, methods predating the policy were strongly coercive and methods once the policy was implemented were no gentler.  They varied locally but were often intrusive and brutal.

Birth planning enforcers would keep detailed records about the women of child bearing age in their area.  This included any previous children, details of their menstrual cycle and their use of contraception.  In some places, pregnancy tests had to be taken regularly and exams were carried out to check they weren’t pregnant.  All of this meant that they could identify illegal pregnancies in the early stages.  These birth planning enforcers oversaw villages, neighbourhoods and were even found in work places. 

Each region had their own pregnancy quota, as did some factories, and women had to apply for permission.  Village quotas were stopped in the 2000s but potential parents still had to apply for permission before getting pregnant.  If you wanted to apply to have a second child – ie if your first child was a girl or was disabled – you had to wait until your first child was at least 4.  Today, with the two child policy, there is no need to wait and permission is no longer required.  However, it is required that parents register online or with the local family planning office when a pregnancy begins.

If you managed to avoid the stern eye of the birth planning enforcer and had a child without permission or outside the policy, you could expect to be fined.  If you didn’t pay the fine (and in some cases, even if you did), the child would not be given a hakou, an official household registration record.  Without it, you essentially don’t exist.  You can’t go to school, work, get healthcare, get married or even get on a train.

As the fines are an important source of income for local government, it is obviously in their interest to enforce them.  In 2012, fines for unpermitted children amounted to the equivalent of 3 billion euros.

It is hard to know how many unpermitted children exist, but one estimate puts it as high as 25 million.  That’s 25 million people who have no rights and no access to basic services.  And any children those unpermitted people have, will also have no rights.

Manninen quotes 18 year old Zedong in her book Secrets and Siblings:

“I felt like I had no worth.  Even dogs have papers, but I had nothing.  Everyone looks down on me… It’s not my fault I don’t have hukou… Even foreigners were able to get official papers to live in China permanently while many Chinese couldn’t even get the basic hukou.”

As well as being fined, you would risk losing your job, having your home and property damaged, stolen or destroyed and in some cases you risk being illegally detained.

“Sometimes a family would lose their bicycle, or their radio.  They might have holes chopped in their roof.  Often the family pig would be confiscated.  In the worst cases, the disobedient family’s house would be razed to the ground.”
– Manninen

If you did get pregnant and it was discovered before birth, abortion was ‘encouraged’.  According to statistics, up to 13 million abortions are performed each year in China and the number will be higher if you take into account illegal abortions.  This works out at one abortion for every one hundred people in China.  Abortion is common in China and easy to get, further women are entitled to at least two weeks off work to have one. 

Regular harassment and pressure to get an abortion was not enough, and forced abortions could be carried out at any stage of pregnancy, with one woman reporting that she had been forced into one at 9 months.  The viability of the foetus was not relevant to the procedure.

This left millions of women facing the choice to have an abortion or face a fine and risk losing their job and more.  If a girl was born, they then faced another issue; should they let their child die so that they could have a boy?  Whilst it did occur, child abandonment became less common towards the end of the regime, with only seriously ill and disabled babies being left on the side of the road. 

As a disabled person this hits me hard, but in a world where you can only have one child, having a disabled child who isn’t going to be able to provide for you in your later years, has long term consequences.  As does the cost implication of meeting additional needs.  Further, in China it is often considered shameful to have a disabled child.

As well as abortion pressure, there was also pressure to be sterilised or to have an IUD inserted.  In rural areas, once you had one child, you were required to get an IUD and there would be 6 monthly checks to ensure it was still in place.  After a second child, one of the parents would be sterilized.

In rural areas, sterilisations were brutal.  They were often performed without anaesthesia, with women laid side by side on the ground and the operation performed right there. 

Inevitably, all of these practices have had a long lasting impact on the country as well as the individual people who’s lives have been touched by the policy.

There is a regularly touted statistic from the Chinese government that the policy prevented 400 million births, fuelled the economy and improved wellbeing.  The birth rate figure used here is based on overly simplistic assumptions.  Further, given that “at least 70 per cent of the decline in fertility from 1970 up to the present was achieved prior to the launching of the one-child policy” (Whyte, Feng & Cai) and coercive birth control enforcement was already in place before the policy, it seems unlikely that the policy had much effect. 

When it was introduced in 1979, the one child policy was “based on politics and pseudo-science, rather than necessity, much less on good demography.  China could have achieved further progress in lowering fertility with some version of a two-child policy, a choice that would have sharply reduced the human suffering caused after 1980” (Whyte, Feng & Cai).

As well as aiming to reduce population growth, the policy was implemented to improve the economy and the quality of life for the residents, however:

“[The] economic reforms may have lifted 500 million above the poverty line, but that still leaves nearly a quarter of its 185 million retirees living on less than a dollar a day.”
– Mei Fong

But there is an upside to the policy, those girls who were the only child were the beneficiaries of the family’s resources and some have thus had the opportunity to receive a higher level of education and support than they otherwise might have.  In 2010, a quarter of Chinese women in cities had a university degree, double the number in 1990.

“The death rate of women and children has also fallen, and their health has improved due to fewer births and fewer mouths to feed.”
– Manninen

Of course, nothing is so simple and the increased education and career opportunities for women has led to a higher number of single adults.  So called ‘leftover men’ are found in rural areas and are less well off and less educated whereas ‘leftover women’ live in cities and are well educated.  This creates a disparity – the men who are available for marriage are not likely to want the kind of women who are and vice versa.

Men, for example, are stereotypically looking for young, beautiful women who haven’t been married before and parents often echo, or push, this thinking.  For example, there are wedding markets where parents come to advertise their unmarried sons and daughters, sometimes without their knowledge.  The continuation of the family line is important and parents see it as their duty to find their child a wife or husband.

The term ‘leftover women’ has been coined to pressure women to marry young and to deter them from being career orientated but the reality is that there are more unmarried men than women.  According to the Chinese Academy of Social Sciences, by now China should have 30 million more men of marrying age than women.  That’s the same as half the entire UK population.

It is this gender disparity that has resulted in women from China and surrounding countries being trafficked and sold to be wives.  One study estimated that, in a four year period, about 21,000 women and girls from northern Myanmar were forced into marriage in one Chinese province alone.

As well as the impact on the children who were born under the policy, there is the effect that it has had on the older generation.  By 2050 it’s estimated that more than a quarter of the population will be over 65 and that poses the question, who will support them?  If they had one child, that child will have grown up to become an adult facing the burden of supporting their elders alone.

“…because of the one-child policy, each young Chinese faces supporting four grandparents, two parents–plus however many children they bear. Shanghai recently passed a law requiring children to visit parents in nursing homes. This oppressive, upside-down pyramid–known as “4-2-1” in China–is another reason Chinese are reluctant to add to their burden by having more kids.”
Time

And then there are the families who were unable to have a child, or whose child died.  People look down on childless couples and in some places they face discrimination, finding it hard to get into a retirement home or get a burial plot.  The concern is that without children, there won’t be enough money for continued payment or maintenance fees.  There is also no one to support them with other needs as they age.

As the Time quote suggested, there seems little appetite for having more than one child, even though the policy changed in 2015.  Although there was an increase in births initially, there hasn’t been much lasting change. 

The government is now trying other initiatives to raise the rate; some areas offer longer parental leave, financial support and in some areas it’s now harder to get a divorce or abortion.  Lowering the age for marriage and offering free or subsidised pregnancy care are other ways that China is attempting to increase the birth rate.

Whatever happens next, I suspect the burden will once again fall disproportionately on women, whether through forced marriages, through trafficking or through forced childbearing.

Resources:

Secrets and Siblings, Mari Manninen

Challenging Myths About China’s One-Child Policy, Martin King Whyte, Wang Feng and Yong Cai

Reinventing China’s Abortion Police, Lucy Ash

One Child Policy, Last Week Tonight

China’s Unmarried ‘Leftover’ Women, Vice Asia

One Child Policy, BBC

Coronavirus and Disabled People (UK)

I have been wanting to write about coronavirus and disability for some time now but every time I tried to think about it, I got too angry and frustrated. Hopefully I am now emotionally ready, we will see!

Obviously coronavirus is horrible for everyone. It is deadly and even if you haven’t had it, your life has been significantly changed because of it. There are loved ones you haven’t seen, holidays you haven’t taken, celebrations that haven’t happened. But for many disabled people, coronavirus comes with a skip full of additional worries.

If you have been paying attention to the news, you may well get the impression that there are no disabled people under 65 and that everyone with underlying health conditions are over 65. Younger disabled people are being forgotten. There are articles about grandparents desperate to see their grandchildren for a hug, but where are the reports about shielding twenty-somethings desperate to see anyone at all because they’ve been alone for months.

As the government shielding list is excruciatingly tight, many people, myself included, have decided to shield because we know our health risks and are vulnerabilities. Just because they don’t fit nicely into a governement tick box, does not mean I am going to endanger by life. There are also many people who cannot leave the house for other reasons, or can’t leave without care which may not be available now. This means that unlike most of the population, a lot of disabled people aren’t going out for exercise and fresh air.

Further, not everyone has internet. A survey by Glasgow Disability Alliance showed that only 37% of people said they had broadband at home. This means that they are not socialising online, they are not taking part in family zoom calls and they are not joining in with games on the house party app.

The mental health impact of not leaving your home, of not seeing other people and of not socialising in alternative ways such as online is significant. If you add in the additional concerns that people with disabilities have around the pandemic, you have a very serious threat to health and wellbeing. Twice as many disabled adults as non disabled adults felt that coronavirus related concerns were making their mental health worse. That is significant.

A higher proportion of disabled people than non-disabled people were worried about the effect of the coronavirus pandemic on their well-being (62.4% for disabled people compared with 49.6% of non-disabled people); their access to groceries, medication and essentials (44.9% compared with 21.9%); their access to health care and treatment for non-coronavirus-related issues (40.6% compared with 21.2%); and their health (20.2% compared with 7.3%) in May 2020.
The Office of National Statistics

My own experience with groceries, medication and health care has thankfully had issues that we have been able to reconcile eventually. I don’t eat much orally so grocery issues were limited to concerns about toilet paper. With medication, my carers have a good relationship with the pharmacy and this has helped significantly. Having carers has been critical here and I have been incredibly lucky that my care provision has not been impacted.

I also needed my feeding tube replacing which was complicated. It needed doing urgently but was not yet at emergency stage – it was an emerging emergency! But various people within the NHS system interpreted it as routine, which it would have been if routine operations were being done. In the end there were a lot of phone calls until I finally managed to get someone with a bit of power and a bit of common sense. What should have been a standard appointment ended up with me and my carer sat in a room in the hospital for the entire afternoon but the tube got changed in the end. In between all the calls, I was anxious and worried – if my tube completely broke, and it was getting close to that, then I would have been rushed into hospital as an emergency for an unplanned procedure.

I wanted to touch on my experience, even though it’s not been too bad, to give some humanity to the statistics. These are real people, real concerns and real lives that are being affected.

I mentioned that my care has been stable throughout this and I know I am very lucky in that regard but 43% of people in an RIDC survey said that they were no longer recieving visits from personal assistants. Many other disabled people are relying on friends and family instead of their usual care and this may be why 33% of disabled adults are feeling like they are a burden on others (compared to 11% of non disabled adults, ONS).

Those people who directly employ their carers have had to face many obstacles including what to do if the carers get sick and how to source precious PPE. Guidance was slow to appear and confusing at best. It has also left many disabled people who have carers or personal assistants, having to source and pay for their own PPE.

Side note, many disabled people live in poverty and many people in poverty are disabled.

Further, the Covid 19 Act made changes to what local councils have to do for disabled people. On the face of it, the aim was to free up resources to allow local authorities to prioritise care, however many disabled people are concerned about the potential loopholes it provides. Local authorities are already very stretched and as such it is incredibly difficult to get the care you need to thrive, rather than just survive. I worry that these loopholes will be used to minimise care provision and then, going forward, that people will be told they were ok on reduced care and therefore don’t need what they have been assessed for.

There is so much here that I cannot cover. This is already a rather long post and I have not touched on the specific impacts on visually impaired and hearing impaired people, or people who are neurodivergent or people with learning disabilities… You get the idea!

Just to give you a flavour of the issues and concerns at play…

And if that wasn’t enough, in the past, many disabled have been told that their reasonable adaptations for work, such as being able to work from home, are not workable. Coronavirus has revealed that we had the technology to make it possible, but not the will. This has been a bit of a kick in the teeth…

Similarly, lockdown meant suddenly everyone realised they could have events online. I have ‘attended’ so many talks and courses and conferences that would have been inaccessible to me if they hadn’t moved online. If I am out and about I use my energy up so much faster than when I’m at home and so I’ve been able to do so much more. I am really hoping that blended talks and courses are the way forward allowing people to participate in person and online.

Further Reading:
RIDC – Latest research into the impact of coronavirus on disabled and older people
Inclusion London – The impact of covid 19 and the government response on disabled people
Inclusion London – Access to Work issues arising from covid 19
Inclusion London – Coronavirus and the social impacts on disabled people
Coronavirus and the social impacts on disabled people in Great Britain: May 2020
Disabled News Service: Disabled people have been excluded and marginalised
Scope: We won’t be forgotten

Edited to add: Inclusion London’s report Abandoned, Forgotten and Ignored

Nettles

A grey-purple stem stands solid in the cool breeze, connected leaves fluttering.  Overhead, the sun darts behind a cloud, then peeks out, half hiding like a shy child behind his mother’s legs.

The leaves of the Nettle are elongated hearts, cut with pinking shears.  Even it’s hearts wear teeth.

I can just about see the stingers, fine hairs that look soft, but experience tells me they are deceptive.  They are the sharp pins from the same sewing kit that held the shears.

As I sit with the Nettle, the air brustles around us and it seems to wave to me.  Or is it pushing me away?  It feels like it’s leaves are frantically ushering me to go.  

I heed it’s advice and scurry inside, out the wind, but shortly after I wonder, should I have stayed?  Was it pushing me away as a self-protective measure?  An extension of the boundaries the stings set?   I wonder if I should have stayed, earnt it’s trust, pushed through the harsh outer layers? 

And I wonder, what would I have found under it’s tough armour?

A nursery for caterpillars?  A buffet for insectivores?  An all-inclusive resort for bugs?

Or all of the above.

Butterflies and moths lay their eggs on the Nettle’s leaves; Small Tortoiseshell Butterflies, Peacock Butterflies and Burnished Brass Moths.

Once hatched, the caterpillars feed on the leaves as they grow, protected from predators whilst they make their magical transformation.

DSC_0097web

Carrot Flies, Black Flies and Aphids eat the Nettle, then in turn, they become food for Ladybirds, Blue Tits and other birds.

It’s thought that more than 40 kinds of insect shelter on and around the Nettle, enjoying protection from grazing animals.  These insects in turn draw insectivores such as Hedgehogs, Shrews, Frogs and Toads, turning a nettle patch into a food court.

It’s flowers offer pollen and nectar for butterflies and the seeds offer autumn food for Chaffinches, Bullfinches and House Sparrows.

The nettle is also home to Jumping Plant Lice, Tarnished Plant Bugs and more.  These creatures are not put off by the Nettle’s sting, they welcome it, they embrace it.  They see beyond the defensive bristling, the measures the Nettle employs in order to avoid being vulnerable.  Where so many others see malice, they see potential.

***

A day later and I pull a few of the more unwieldly plants from my patch of ground.  I would rather I tamed them gently and sparingly than the council tried, with brutal force and unrefined machinery. 

Despite two pairs of gloves and knowledge of how to approach a nettle, I still get stung.  A grey pin prick amongst the whorls and swirls of my fingertip. 

When the tiny hypodermic needle brushed against me, the tip broke off and the remaining hair pierced my skin, injecting an elegant cocktail of irritants.  This included histamine which I am especially sensitive to, and is likely why my one single nettle sting was still throbbing and swollen hours later.

I can’t think of another plant whose identity is so wrapped up in it’s sting, in it’s self-defence.  Other plant protections are utilised, taken for human use – whether it’s the nicotine that protects the Tobacco plant or salicylic acid produced when herbivores bite Willow or the Cinchona trees which use the bitter taste of quinine to repel predators.

***

There is an old belief that a nettle in your pocket will keep you safe from lightning and give you courage.  Perhaps this is a self fulfilling prophecy, not everyone would pick the nettle in the first place…

Or, perhaps it is the gift that comes from knowing the Nettle.  Of knowing there is more to a book that it’s cover, more to a nettle than it’s sting.  Of knowing the Nettle is more about protection than defence.

The dawn chorus, and pain

It’s 4.15am and I am in so much pain that I am nearly in tears – something that takes a lot for a pro like me.  As I’m slowly breathing in and out, I hear a bird.  Closing my eyes against the pain, I focus on the melody.  Phrases repeat and change and reappear making a tune that feels slightly off familiar.

This time of morning is one I know well.  It is my secret segment of the day.  A rare alone time.  Often, I read to distract from the pain, or listen to an audiobook but now, as dawn edges into the night, I find myself smiling.  This in-between becomes my own special moment, a time when the birds are serenading me alone.  Sharing their wisdom for the day ahead.  In those notes, I hear hope, even knowing that they may well be territorial shouts from male to male.


Another morning, another 4am, another bird call; a song thrush this time.  A song, then a space.  A space filled with hope.  Another call, another wait, no reply. But it’s early in the season, there’s still time for a female to hear and accept the invitation.

I wonder who else hears the songs, perhaps a fox, or a hedgehog?  I know there are bats nearby.  I have seen them at dusk swooping under a bridge and diving for insects over the lake in the park.  They are most likely Pipistrelles; flitting across grey-black night.  Perhaps other creatures stir in the night with me, eyes half open, ears filling with the music of the dawn.


There have been so many early mornings when the birds have been my comfort, my companions.  Unable to sleep, I’ve had the pleasure of hearing tweets and calls and song, and they have, and continue, to offer me solace in my pain.

Connecting to nature in lockdown

Whilst I have a long practice of connecting to nature from my home, and even from my bed, I have found connecting to nature during lockdown has brought further opportunities.

As well as what follows, you may want to look at my tips for connecting to nature when you’re stuck in the house.

One of the fantastic things about everyone else being stuck at home is the number of events that have gone online. As such I’ve been able to ‘attend’ so many talks and conferences that would have been impossible for me otherwise.

  • Urban Tree Festival – This was held in May and had offerings including talks, workshops and book clubs.
  • Hay Festival – The Hay Festival also went online during May but don’t worry if you missed it, you can watch a free offering of the week or sign up for the Hay Player to catch up.
  • York Festival of Ideas – This is always a highlight of my year, with such varied offerings and the wonderful Fox Lane Books who continue to support them this year in their digital format. In terms of nature, you might want to check out talks on The Sustainable(ish) Living Guide , Our Nature Our Lives and Experimenting with Nature. All of these are online events so can be accessed across the world and are happening this month (June).
  • Other online offerings I’ve attended have included… a talk about peacemaking circles in Native American communities, a workshop about nature and resilience and a virtual foraging walk. I’ve found these searching and browsing EventBrite.

One of the most amazing lockdown offerings I’ve found has come from America, from Emergence Magazine who have beautifully written articles, and that’s a wonderful way of connecting with nature in itself. But they have also gathered together a host of community offerings including book clubs, talks, seminars and a fantastic nature writing course which I have been part of for the last few months.

But of course connecting with nature isn’t just about courses and learning. It’s about experiencing. It’s about noticing. It’s about connecting.

DSC_0253web

We’ve been lucky in the UK over the last couple of weeks and have had some incredibly nice weather and I have managed to get out into my yard which isn’t the nicest place but is outside and safe right now. Normally I would be in the park with lots of nature and people and things going on around me. But instead, I was in a small space, no one but my carer visible and not as much nature. Or at least not as much obvious nature. The longer we were there, the more I tuned into the bird songs and what they were ‘saying’. I saw the ants erratically wandering over the paving slabs. I spent time looking at the greenfly that landed on my leg.

This is the perfect time to focus on place, on the small and slower things that are happening right now. Notice the fluffs of dandelions on the breeze and let your mind wonder where they are headed and what life lies ahead for them.

Point out nature, to yourself or to another being. Doing this helps you to connect for a moment rather than see something fleetingly and then move on. I’ve been doing this with my carers for ages now and I know that they now notice nature more as well which is fantastic! Or take a picture or make a note of how it made you feel to hear or see or smell that thing. Acting on it helps you to connect to that part of nature.

If you know people who are able to go out for walks safely, enlist their help! Get them to take you with them via video call. This is much more fun that pre-recorded virtual walks because you are in real time. And it gives you something to talk about other than the state of the world right now. I’ve also found it helps you get to know the place your friend lives in. If you were visiting in person, you probably wouldn’t see the local park or field, especially if you have mobility issues and said area is inaccessible.

Get yourself feeders, find blogs and books that inspire you to look closer and, most importantly, look out of your window!

The Spinster Club Series

I picked up these books as a three pack recently and they seemed perfect reading for the recent hot weather we’ve had here in the UK recently. For all I love ebooks, they aren’t ideal for intensely sunny days!

The books can be read separately but there’s a lot to be gained from reading them in order, with Am I Normal Yet? first, then How Hard Can Love Be? and finally What’s A Girl Gotta Do?.

These books gave me so much hope for young adults today, and also sad for my days as a mentally ill, feminist teenager who would have loved these books. They would have helped me feel less alone at a time when I felt awful.

They focus on three friends who are going to college and – no spoilers here – decide to form the Spinster Club. It’s their way of a) reclaiming the word spinster and b) coming together to learn about feminism.

The first book is told by Evie who has Generalised Anxiety Disorder and OCD, actual OCD not just wanting her pencils straight:

“…now people use the phrase OCD to describe minor personality quirks .

“Oooh, I like my pens in a line, I’m so OCD.
NO YOU’RE FUCKING NOT!

Oh my God, I was so nervous about that presentation. I literally had a panic attack.
NO YOU FUCKING DIDN’T!

I’m so hormonal today. I just feel totally bipolar.
SHUT UP, YOU IGNORANT BUMFACE!”

– Am I Normal Yet?

It tells of her struggle with her mental health whilst in college and her overwhelming mission to be normal, to be like everyone else. It also tackles the issue of whether or not to tell your friends about your mental health and this hit me hard as it was such a big thing for me in high school. By the end of 6th form, only one person knew anything about my mental health, and what he knew was only a fragment. None of my so called close friends knew anything.

One review I saw made a comment about how a character in the book mocked mental health and how that undermined the praise the book got for tackling mental health. I wanted to add a note about this. I appreciate that it upset the reader but for me, it helped put Evie’s decision about telling her friends or not about her own diagnosis in context. People do still mock mental illness and make flippant comments and I suspect this is still very much the case in colleges and 6th forms. It certainly was back in my day and was part of the tapestry against which I had to cope with my mental ill health and was one of many factors which stopped me from telling anyone.

The second book looks at family dynamics and how a parent with alcoholism can affect this. There are also themes of gaslighting, step families and feeling invisible in this instalment of the Spinster Club series.

In the third, but not final*, book we see Lottie taking on the patriarchy, whilst also trying to follow her parents dream of her going to Cambridge and fast tracking it to become Prime Minister. The book opens with her being harassed on her way to college and how it weighs on her throughout the day; both the harassment and the fact she didn’t do anything when it happened. Something I’m sure many women can relate to.

*They return in …And A Happy New Year? which I haven’t got yet

Throughout the books, the mental health and feminism forms the background for the general teenage drama of relationships, romance and friendships. They are funny and moving and gripping. Difficult topics are approached sensitively and the feminism is delivered as an aid to the story, rather than shoe horned in.

I really liked that they were aware of feminism and feminist ideas and yet were still struggling with being teenage girls, full of hormones and emotions. They were girls talking about boys, talking about dates and so on but they were also self aware. I felt this made them realistic and relatable. No one is a ‘perfect’ feminist, especially not teenage girls!

House Sparrow Photos!

Photo heavy post ahead!

I have loved hearing and watching the house sparrows that visit my feeder and obviously it’s the time of year for chicks. I have been trying to get pictures of them, and the starlings, feeding their young but every time something has interfered. I had pretty much given up when I got these images! These are just a select few, if you are as sparrow obsessed as I am, check out my flickr album for more!

The first few pictures are of a male House Sparrow feeding his fledglings and then a couple of him all fluffed up, which is so cute!

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The girl in the sea

Back in February I did a course about poetry and paintings. One if the exercises was to imagine yourself in a painting. I couldn’t immediately think of any paintings so I was writing myself into an imaginary one, but here it is:

The girl in the sea

She is knee deep in riptides
angry greys and blues and browns
swirl round her feet.
Dark cliffs loom behind her

merging with heavy storm-
filled clouds.

I am hot, sticky and oppressed
by the humidity of a city summer.
My blue cotton dress reflects
off the protective glass
and I threaten to overwhelm her.

I step closer
squeeze beneath the gilt frame,
between glass and oils
and sink into her world.
Breathing with relief for a second
as the cool air embraces me.
Then icy spray
spits at my bare arms
leaving goosebumps.

I should have chosen that picnic scene
in the last room;
the one with glasses of wine
and the glow of autumnal gold.

The girl still stares towards the horizon
knee deep water becomes waist deep
and I become afraid.
The sea is untamed and will think
nothing of taking her as prey.

I don’t think I can save her.