Bird song and coronavirus

Some evenings the bird chatter – the kaa ka kas, the pep pip pips, the alarm calls- grate on me.  During the day I love hearing them and it grates on me that it grates on me and thus a vicious cycle spins on.

This is a new thing.  Normally I love hearing the birds as I settle into bed so I wanted to interrogate this, to try and understand what is going on.

My initial thoughts were about time of day; come evening, I am much more tired, and right now I am more likely to be fed up and despondent by the time I get into bed.  This is also the first time I am really alone in the day and I sink into my subconscious whirlings.  I don’t feel naturally aligned with appreciation, appreciation of anything, at this time of day.

I spend the day noticing and loving but by night I need distraction – tv, film, reading – something I can escape into.  And whilst the birds are incredible, they are inevitably out there in the world, right now.  And my mind will not let me forget that I am not, and will not let me forget that I am hearing them so much clearer because of the global pandemic. 

The birds do not give me the escape I need in this phase of my daily cycle.  Their caws and cacks instead pull me away from the fantasy world I plunge into and remind me that my escape is just an illusion.  That however hard I try, I am still living in a world with a virus that could kill me and the people I love.  A virus that has already killed. 

I am still living in a world where the reckless acts of strangers ignoring the rules could turn out to kill.  They could be carrying it, walking bombs waiting to be detonated.  I am still living in a world where disabled people are being devalued repeatedly in clumsy attempts to get through this crisis, where we are told we may not get the care we need to stay alive (1). And that now that able bodied people are stuck home too, suddenly technology can be used to meet up, to do courses. to offer talks online.  And suddenly working from home is perfectly possible.

The calls of the blackbird on the roof pulls me back into a world where people with a week or two of being stuck home under their belt, are suddenly experts on loving nature from home.  Despite their daily walks, possibly through countryside and woodland, and their good sized garden, they speak with the authority of a housebound disabled person who has lived this for years.  Our voices, those with lived experiences and expertise, are still not heard.  We are shouting and going unnoticed because we are disposable, literally right now.  Worthless.  Valueless. (2) 

I have shed many shackles since becoming disabled; the idea that my value is about my economic contribution and my productivity; that my self worth is tied to doing… Is the evening bird song grating against another shackle?  One where I cannot be a nature lover, or a nature writer, if I cannot always appreciate it and embrace it?(3)

The nightly scrabble and scramble of starlings on the feeder doesn’t seem as endearing as it did hours before.  And all that has changed is me.  I have moved through my day, and now I want to tune out the world, and all the noise that tries to tell me I am unimportant.  When the messages scream so loudly, so constantly, they cannot help but echo and reverberate around my soul.

By the time I get into bed, I need to escape.  I need to live in a different world or a different time.  And those birds that I love so deeply and dearly, peck through the bubble I am trying to build.

Come the dawn chorus, I am back to noticing, caring, loving and appreciating.

Notes

(1) A recent RIDC survey found 50% of people with care support needs are no longer receiving health or personal care visits to their home. Disabled people left off coronavirus vulnerable people list go without food. Ministers warned coronavirus bill threatens services for disabled people.

(2) ‘I feel like I don’t count,’ says man with MND. Disabled people ‘forgotten’ by government strategy.

(3) This already feels a harder label to claim with the ableism within the environmental movements and the wilderness ideal excluding disabled people

Ableism in the environmental movement

There is already evidence that the environmental movement is “a site of exclusionary practices including racism and sexism” (Fenney) and there is increasingly evidence of ableism. This matters because any exclusion may reduce the effectiveness of the movement to achieve its goals.

 

As a note, I’m saying environmental movement but am aware that it’s much more complicated than the phrase sounds, that its made up of different groups with different approaches and different strategies.  However, any part of the environmental movement would benefit from considering whether they inadvertently exclude any groups.

There are barriers to certain aspects of sustainable lifestyles, pro environment activities and activism and Fenney suggests that “there are particular features of the British environmental movement which may exclude disabled people”.

Barriers include physical access to meetings, protests and conservation sites.  A lack of accessible information as well as a lack of information about accessibility.  Increasingly websites are relied on for information and these are not always accessible and accessibility information isn’t always up to date.  Financial and social barriers play a factor as well, with the latter that might be being dependant on the help and kindness of others who can refuse, as well as attitudinal issues.

“Broad environmental concerns can also be considered a feature of privilege, however.  It may not always be a priority of disadvantaged groups because of their increased need to focus primarily on the difficulties encountered in their everyday lives and environments”
– Fenney

The social hierarchies from general society transfer over to the environmental movement, but can feel much worse because of the narratives around embodiment.  Assumptions about what disabled people can and can’t do, and are and aren’t interested in, are made unquestioningly in wider society and unfortunately are also found within the environmental movement.

In Fenney’s research, participants identified implicit ableism in campaign messages and materials, giving cycling as a key example.  Cycling is often positioned as an alternative to car use but can be promoted in a way that focuses on physical fitness and ability as well as suggesting a moral superiority.  Another participant raised the issues of requiring medication which is produced by big multinational companies and how this doesn’t work in the simplistic view of natural is good and unnatural is bad.  Relying on medication also goes against a narrative of self sufficiency and independence.

“…the environmental movement is deeply attached to the notion of “the solitary retreat into nature as the primary source of an environmental ethic” … By implying that one must have a deep immersion experience of nature in order to understand nature, ecocritics create a situation in which some kinds of experiences can be interpreted as more valid than others, as granting a more accurate, intense, and authentic understanding of nature.”
– Kafer

This emphasis on self sufficiency and solitary retreats erases the importance of interdependence that many people – disabled or not – rely on.  We hear over and over again how we should be independent – every man is an island – and yet there are many environmental benefits to being an interconnected web instead of a lone off gridder.  Of course, different things work for different people but from my corner of the world, there are huge benefits to most people of accepting interdependence as a model.

Even living the rural idyll has its disadvantages for some people with disabilities.  If I had followed my teenager dream and moved to the middle of some fields in Wales, then I would struggle to have my care needs met, to have carers that I love and to have the access to the health system that I need.  It wouldn’t be impossible, by living in a city I have more choices and more opportunities.

For some people, disability and conservation are irreconcilably mutually exclusive.  This can be seen in the creation of accessible paths in natural reserves.  There is this misunderstanding that in creating a certain kind of path or access, you will damage the natural environment.  This ignores the fact that creating any access, even for able bodied people, has an impact.  It has actually been found that some accessible access can actually be more protective.  Instead of soil paths which erode and which mean people can wander off the path and damage the flora, raised boardwalks limit the damage, create sheltered environments under the path which can benefit certain species and mean that animals don’t have to risk crossing a path.

As well as the moral superiority found in some parts of the environmental movement, there can be a competitiveness to be the best at being green and this creates a hierarchy of sorts.  Certain behaviours can be status enhancing and often these aren’t available to all.  For example, being in the wilderness miles away from anything, being able to swim in wild water, getting off the literal beaten path, getting away from technology, the privilege of walking with feet in contact with the soil and so on.

Also on the hierarchy are things like not using straws to drink with – and not letting anyone else either, or at least not without an argument and intense justification.  For some people it’s not easy to turn the heating down by a degree, or use public transport and “inaccessible solutions to environmental problems risk adding to disabled people’s exclusion from participation, as well as threatening the success of these solutions” (Fenney).

Ultimately, the environmental movement needs to consider any implicit or explicit exclusion because without a full spectrum of members, there will never be solutions which work for everyone.  With people living longer, and with everyone at risk of becoming disabled, we need the environmental movement to work in an inclusive way or their goals will never be fully successful.

Reading

The wilderness ideal, nature writing and disability

“Mountains and disabled people have something in common, they both get stereotyped as inspirational”
– Elizabeth A Wheeler

On the whole, the ideal nature person fits into the wilderness ideal which I will come on to but first I wanted to mention the one image of a disabled person in nature, and that is the supercrip.  Supercrip stories tend to be about an individual overcoming their disability through hard work and perseverance in order to do something spectacular.  There is a sense of transcending not just nature but the body itself.  This is a person who ‘overcomes’ their disability in order to scale a mountain or someone who uses a wheelchair but skis.  These people are often the exception and whilst what they do is great, it can’t be the only vision of disability within nature thinking.

Back to the typical wilderness ideal though… There is a particular body type – white, male, fit, ablebodied – who can have the elite, transcendental experience and be a bona fida naturalist.  Having this ideal means you have created the opposition, the person who is not welcome in nature.

Alison Kafer explains that there are “complicated histories of who is granted permission to enter nature, where nature is said to reside, how one must move in order to get there, and how one will interact with nature once one arrives in it”.  Additionally, not only do you need to be in the wilderness, but you should be alone and off any tracks or trails.  And people who can do so are generally cast as better nature people.

As the disabled person has been cast as the antithesis to the wilderness ideal, there are no images of disabled people in nature, let alone a stereotyped image of a ‘normal’ disabled person within nature.  This absence is referred to by Jaquette Ray as the “disability-equals-alienation-from-nature trope” in her writing.  She finds “the only place for the disabled body in the wilderness ideal is as an invisible, looming threat – symbolic rather than actual”.

It seems to me like there is a hierarchy of moral superiority with the wilderness ideal at the pinnacle of the mountain and disabled bodies at the base, unable to climb up unless they happen to fit the supercrip model.

I have a separate post planned about ableism within the environmental movement and will expand on this idea of moral superiority in that context but as a way of seeing this in action, think about this:

There is a hierarchy of species that you interact with as well as where you interact with them.  To see a rare plant or rare creature comes with more status, as do megafauna and exotic species.  This by default means that connections with more common species is seen as lesser, especially if you interact with them outside the wilderness.

Within the wilderness ideal trope, we find the narrative of technology as an antithesis to a good experience.  We are told to leave tech behind in order to have a more embodied experience, one that is more about presence but this ignores the value of tech.  Technology allows electric wheelchairs and other mobility aids to experience the world, phones include apps that enhance the experience and provide a safety net for those of us who cannot be alone without backup on hand.

Writer Edward Abbey took this rejection of technology to the extreme and positioned electric wheelchairs with cars, and both as alienating us from nature and the wilderness.  He pressed the issue by telling people to get out of their electric wheelchairs and that unless one walks, one cannot experience nature.  The only way to know nature is to move through it on foot.  Whilst Desert Solitaire: A Season in the Wilderness was published in 1968, the thinking is still very present in many people’s minds.

Extending this narrative to nature writing, we are told that writing with pencil and paper is somehow better than writing on a computer or speaking into a dictaphone.  Again, this way of thinking pushes writers with disabilities out of the picture, assuming we even managed to get into the scenic nature photograph in the first place…

“There is a long tradition in ecological writing that defines people with disabilities as the opposite of environmentalists.”
– Wheeler

Much nature writing is first person and may touch on a bit of health but often as something to overcome either through nature or so one can return to nature.  Often it is a short term condition, or one at least that can be managed well.  It might be cancer or depression and this isn’t to make light of those serious conditions but there is a difference between something you can recover from and having a chronic, long term health issue or disability.

“First person nature encounter narratives generally focus on the interaction between one specific body and one specific landscape.  A narrow focus can eclipse the possibility of other body types and other landscapes.”
– Wheeler

Many nature writers talk of the personal transformation or spiritual experiences that comes when you are alone in the wild or having reached the summit of a mountain, something clearly not accessible to everyone, disabled or not.

Polly Atkin wrote in the New Welsh Reader about what has been called ecocrip.  She writes particularly about poetry but obviously what she has to say extends to nature writing more generally.

“As ecopoetics has become established, certain practices and expectations of ecopoetic process and content have also become established.  These predominantly presuppose able-bodied practitioners, who can conduct energetic field work and outdoor workshops, focusing on walking, running or swimming as both poetic process and means of connection with the wider ecosystem.”
– Polly Atkin

Miranda Cichy said that “a lot of nature writers seem to believe that you have to go our alone and on foot in order to write about it.” But this doesn’t have to be the case.  A genre needs many voices, many perspectives and disabled people can add their own experience.

“The love of nature does not require specific bodily abilities.”
– Wheeler

I have written about my own way of interacting with nature and I do hope some of the examples I’ve given help other people to feel inspired and to value their own experiences, even or especially when they differ from the norm.  Kafer affirms that “the experience of illness and disability presents alternative ways of understanding ourselves in relation to the environment.”

I wanted to end with some quotes that I find inspiring and that validate my way of interacting with nature and encourage me to share the way I see the world.

“Waiting to be discovered is a wildness which is smaller, darker, more complex and interesting, not a place to stride over but a force requiring constant negotiation.”
– Kathleen Jamie

“Dominant stereotypes and ableist narratives tend to overlook the richly textured ways in which people may experience nature; not to master it or to overcome impairment but rather to ground oneself in the world, to know and feel part of nature.”
– Bell

“Nature writing has created this image of environmentalist as white guy who goes out into the wilderness… but there have always been culturally diverse writers and women writing about the natural world as well, bring other ways of seeing this human-nature connection – not nature as a remote place to recreate in tranquillity, but nature as a place intimately connected to human habitation, culture and identity.”
– Melissa Tuckey

“Did you hear about the rose that grew
from a crack in the concrete?
Proving nature’s laws wrong it
learned to walk without having feet.”
– Tupac Shakur

Reading

Within her essay, Atkin mentions a few ecocrip writings:

I’ve just bought all three so maybe that’ll be the basis of a future blog post.

My interactions with nature

Since become disabled, my interaction with nature has changed.  My last couple of blog posts have raised some of the issues that come with this but it has given me an opportunity to reframe how I interact and create new ways which give me a new intimacy.

There are subtle changes in weather which once were easily overlooked – throw on a coat, grab an umbrella and so on – but which now act as a backdrop for the play that is my life.  Rain and electricity don’t mix well, so I have to be aware of this when I’m going out.  The level of precipitation dictates where I go, how I get there and even if I can go out.  Ice and snow and ungritted pavements go about as well as you can imagine.  Then there is the effect of weather on my body itself.  Warmth helps my pain levels, cold does the opposite and worst of all is when days are noticeably warmer than nights and my pain levels flare up.  Hot days stresses out my autonomic system, making me feel faint, breathless and generally yukky.

The way that the weather plays out in my life, on my body, means I am much more aware of it than I once was, much more attuned to it and by extension to the changing of the seasons.  I also find I am more aware of light levels, possibly in part because I tend to spend my morning drinking tea in the same seat.  A seat which faces into the sun as it rises over the houses and then later in the day, it reaches me from the other side, through my kitchen window.

When I am outside, whether its considered wild or not, I struggle to lose myself in my environment in the way that many people speak of doing in the wilderness.  It is not possible to engross yourself in the land around you if you are always scanning for roots and holes and puddles to avoid – this also doesn’t fit with the image of the romantic ideal of nature

“Detailed scanning of the environment is part of disability culture’s everyday adaptation and troubleshooting”
– Elizabeth  A Wheeler

There is, necessarily, a constant adjustment and awareness of the environment, a sensitivity and responsiveness to changes.  In man made worlds, that might be an intimate knowledge of where the drop kerbs are, where the pavements get too narrow for a wheelchair or where the path is in need of repair.  Take that same intense scanning into a more natural space and you will find the intimate relationship now becomes about roots and twigs and soil.  This is not capital N Nature as some people see it, but this is personal and is another model for being in nature.  One that often focuses on the smaller things in the landscape, and in doing so can mean you are attuned to other beautiful aspects such as fungi and leaves.  Back in that man made world, I see the tenacious plants that weave through the cracks in pavements and the feathers that have floated down to the tarmac.  It is a different experience, but different does not mean inferior.

“Disability narratives can widen the emotional repertoire of possible responses to nature”
– Elizabeth A Wheeler

Another way in which I connect to nature in an intimate way is through the birds that visit my bird feeder.  I have predominately house sparrow visitors and have been able to watch the parents rush back and forth taking food for their babies.  I have seen those babies venture out to sit on the bush by the feeder, waited on by mum and dad until they are old enough to get food for themselves.  One little baby pushed this and, even though I knew it could feed itself, still begged some mealworms from mum… Unless I had seen this family virtually everyday, I wouldn’t have known that was the case.

Aside, although I tend to call the sparrows my babies or the sparrow family, the correct name for a group of sparrows is a flock, but can also be called a knot, flutter, host or quarrel… I think my birds might be best described as a flutter…

Similarly, there is a single starling that has been visiting since it was a chick.  I have no idea why it has ventured here alone but it’s been incredible watching it grow and develop it’s iconic starling markings.  There have been a few scuffles between this starling and the sparrows but I’m pleased to say that in the last couple of months a peace agreement seems to have been made.  Yes, it does seem like they both give each other sly glances and they aren’t going to be best friends any time soon but on the whole it makes for a much more serene experience.  Except when the lone starling was joined by about thirty friends… It’s only happened on a couple of occasions but I did think that maybe the apocalypse had arrived… Thirty black birds descending on one small feeder less than a metre away from me, with only the window between us… The sparrows looked horrified – yes I may anthropomorphise my little babies – and because the starlings were just fighting for feeder real estate, none of them actually got any food anyway… On the last occasion, when the mob left the feeder vicinity, they joined a black cloud of other starlings and I was slightly concerned an entire murmuration might descend… thankfully they didn’t, I’m not sure the window would have stood up to that…

As well as being a great and accessible way to engage with nature, whatever the weather, bird feeders help people become more aware of their local wildlife and the types of birds that visit.  Watching them eat means I’ve got to know the different beak shapes and the different ways they use them.  Feeding birds has also been shown to change human behaviour, for example being more concerned about cats that visit the area or being more aware of a sudden increase in the number of birds.

“These human responses were in some cases tied to people’s emotions about their observations, particularly anger.”
Observations at bird feeders

If you’re thinking about getting a bird feeder, there are different options out there, some will work better than others for you and for different birds.  I currently have two bird feeders, one which is a hanging feeder that is attached to the back fence and gets filled with fat balls, and one which is stuck to my living room window and is filled with mixed seed and mealworms (it took a while to find the food that my birds like, they’re surprisingly fussy…).  I also have a couple of ceramic poppies which collect rain water, or can be filled with water in the summer.  If you’re lucky and have some privacy in your bird feeder location, you could add a camera!  I did research, it’s not ok for me to point a camera at my feeder because it takes in a large view of the pavement and street… boo!

Anyway, I hope that by touching on a couple of ways I engage with nature, I have made an argument that having a disability does not mean your interactions are inferior.  I also want to make the point that more inclusive ways of engaging with nature are more accessible to people who might not go hiking or bird watching otherwise.

(in)accessibility and nature

I will be talking primarily about access from a mobility perspective in this post because that is my main experience.  There are so many ways in which health and disability can affect engagement with nature and I do hope to touch on that in another post.  In the meantime, if you want to share your own experiences, please do so in the comments.

As I have discussed, there is a privilege with which many people view and experience nature.  There is an unspoken assumption that nature means somewhere “out there”, away from humans, somewhere that could be described as wilderness.  By creating that distance, we not only put ourselves outside of nature but we make it impossible for some people to engage with nature.

Immediately my mind goes to those of us who can’t walk, or who don’t navigate the world in the same way as the majority.  Some of us require carefully cultivated paths which regulate our experience, inevitably some might say.  But is that not because an able bodied world has determined that we don’t need the same access as others?  That by adding a short circular route near an information centre the tick box exercise is complete.  That we don’t need anything more.  That being disabled is a uniform experience and thus we want a uniform way of being in the world, and by extension in nature.

Hidden and undiscovered or rarely used places – that tend to be less maintained and hence are less accessible – are often considered to be more natural than tarmacked or wooden decking paths.  This means I cannot truly experience nature in the eyes of those people but I know that this isn’t true.  I experience nature deeply in my own way, perhaps more so because of my disability and limitations. Of course, there are other reasons people may not be able to get off the beaten track including where they live, finances, transport, lack of information and so on.  Race, gender and class all have roles to play as well and of course these barriers need to be broken down too.

Another common narrative about getting into nature is that of getting away from technology.  If I am leaving my house, I have to either be pushed by a carer or go in my electric wheelchair, with the latter being much more comfortable and more independent.  Technology is not antithetical to nature.  Like everything in this world it’s about how we use it.  Technology can help us to identify bird calls or trees, put names to the flowers we’re seeing and, in that way, can help to more deeply engage us with the nature we are experiencing.  Taking photos with cameras and phones can help us see more closely and help us to slow down.

A third thread of the discussion around getting into nature is that of how easy and simple it is to go out in nature and how foolish we are if we don’t.  Again, an example from my own life.  Say I have found somewhere suitable to go and be in nature, somewhere accessible, with parking so we can take my wheelchair and not worry about the battery dying.  Say all of those things are sorted and then it rains.  Just a little rain, no big deal; the words of many people who think nature is easy.  We whip out my wheelchair waterproof, wrangle it over me and the chair and in doing so I’ve got wet.  Assuming no more water leaks in, which it always does, I will still get chilled and probably ill as a result.  The same is true in winter, even on dry days – being in a wheelchair, not moving, means you feel so much colder than those around you and for many people with physical health issues, this has greater consequences.

This is to say nothing of all the mental work that goes into finding somewhere suitable to go in the first place.  There is a dearth of information about accessible nature out there.  It is improving but you can still get better information about where to go for a romantic stroll on the Yorkshire Wildlife Trust website than you can for wheelchair suitable walks.  If you filter by the latter, you will get zero results, even though I know at least a few of their sites are wheelchair accessible…

But, despite all of this, there are some very easy ways to make the nature ‘out there’ more inclusive.  Adding edges to the paths means visually impaired people who are using white canes can identify the borders of them more easily.  Replacing locked gates with radar locks.  Making kissing gates a little bigger.  Even just providing all of this information online and through other methods helps immensely.  Styles with spaces for guide dogs to walk under.  Adding wooden board walks.  Adding a ramp into a bird hide.  Adding benches every so many metres and having a map to show where they are.  Adding a gap into a cliff fence at wheelchair height.  These are not difficult changes, they just require things to be done differently.  Instead of repeating what has always been done, an open mind can come up with easy ways to make the nature ‘out there’ more accessible to everyone.

Things that improve my life

This is part four I think… Of course new products become available, I become aware of different products and my needs change so this is likely to be an ever evolving list.

So, things which improve my life include…

An adaptor which turns your wheelchair into a phone charger.  I have a short, multi ended charger plugged into mine so that I can charge any of my devices, my friends and my carers should the need arise.  It works when the chair is turned off as well as when it’s in use.

Small wheelchair charger.  Most wheelchair chargers are big and clunky and not very portable but you can get some which are more reasonably sized and I have one of these in my wheelchair bag at all times, just in case!

Period pants, which I love so much I wrote a whole blog post about them…

Now I have my wheelchair vehicle – another thing that makes my life easier! – I am going out and about in my electric wheelchair a lot more which is so much better.  However, it is bigger and doesn’t let me get under tables very well which is annoying when I’m at courses and want to write notes or rest the handouts on the table.  So I got a Trabasack wheelchair tray, in purple of course.  Mine is the curve connect and it hangs on the back of my wheelchair but then when I need it, it fits snugly on my lap and has a zip pocket so I can pop my tablet in there.

My tablet is also an essential.  I go for the lightest reasonably priced one and when I needed a new one, this happened to be the Samsung S5e.  I also got the keyboard and a stylus.  I also have a pen holder which is designed for books and basically is a piece of elastic that handily slides round my keyboard cover so my stylus is always to hand.  Unfortunately I cannot seem to find what I mean online…

As winter is approaching, I’m using my wheelchair cosy and waterproof a lot more… For added warmth I also tend to add blankets under the cosy and if it’s really cold, then an electric hot water bottle.  If it’s really really cold, then I’ll also pop a couple of hotrox in my shoes… Heat packs are also handy for warmth and soothing angry body parts.

If you aren’t as obsessed with being warm as me, then you may want to have some cool packs in your house… There are ones which turn into ice packs on opening which are useful for out and about and we also wrap small freezer blocks in a tea towel.

Actually, that reminds me, in the summer wheelchairs can get very sweaty… They tend to be black and tend to be made from plastic-y fabric.  This meant that on one of the first really hot days this year, I ended up with my back drenched in sweat… And kept burning myself on my wheelchair.  We got round this by using a thin cotton blanket which we draped over as much of the chair as we could.

Talking of out and about… I have a wheelchair bag which aren’t known for being exciting so I have covered mine in patches and badges.  In it are the usual things like keys and a phone but also sachets of calpol, my medication paraphernalia, heat packs, ice packs, reusable straws in a totally strawsome straw pouch and a spoon with a moulded handle that I can use more easily.  There’s also a 4Head stick which I use for headaches but also find it can help relieve muscle tension when my joints get angry.  And also a few sachets of salt in case I feel POTsy when I’m out and about.

Back in my flat, I have a wonderful mattress (mine is a mammoth one but mattresses are very personal) and a very specific to me bed arrangement.  I have two maternity pillows which help to position my upper body, a leg raiser to support the lower half and a duvet raiser tent like thing which stops the duvet from bending my feet.  The latter is good but I found that it was causing a draft as the duvet wasn’t long enough to drape over the end so I have covered it with a blanket, secured by pegs.  I also found that it would sometimes fall off the end of the bed so I got a kids bed rail and popped it at the foot end of the mattress.  Problem solved.

And just a few odds and ends that I wanted to mention:

  • baby toothbrush wipes so I can sort of clean my own teeth – I don’t like things in my mouth so it’s very hard for my carers to clean them well…
  • a cup holder which is designed for prams and pushchairs but which also attaches to my wheelchair and is perfect for popping my phone or keys in
  • peg boxes are great for carrying around the bits and pieces I need with me in my flat – phone, door opener, postit notes, 4head stick, nail file etc.  It means that I don’t have to remember to move them from room to room and I don’t need my carers to get anything I’ve forgotten.
  • a massager… I got this from Naidex and I love it.  Mine is a Truviv one and I’ve found it really helps when my shoulders are tight.  I do have to be careful because of my joints so I always use it on the slower speed and not for too long at a time.  Just something to think about if you have EDS.
  • a back rest for my manual wheelchair.  This actually came free with my massager and is probably not designed for wheelchair specific use but it fits perfectly and makes the chair a lot more comfortable.

Finally, a sense of humour makes all the difference.

Being disabled in hospital

Intuitively, you’d think hospitals would be set up for people with disabilities, long term health issues and wheelchair users. However…

When I stayed in hospital I found my preexisting and unrelated disability was treated badly. This included:

  • Not being able to go in ambulance in wheelchair – I had to transfer out of my electric wheelchair, into the ambulance wheelchair and then I could get put in the ambulance. This means when you arrive, you are reliant on hospital wheelchairs and people to push you. Both are in short supply. I got my manual wheelchair brought into hospital so had a bit more comfort and didn’t have to rely on hospital wheelchairs being available. Unfortunately it was really hard for me to get my electric chair so I couldn’t leave my bed without someone to push me.
  • This was made worse because nurses and healthcare assistants kept telling me to get off the ward and have a change of scenery. I understand the value of leaving the ward but the main friend I had visiting had hurt her back so couldn’t push me. When I explained this I was made to feel like a bad patient and there was a very clear implication that I didn’t want to get better or get out of hospital.
  • Related to this, I kept being ‘encouraged’ to walk further and for longer than I can and then all but being told off when I couldn’t.
  • I tried to ask for help getting out if bed and was told no because the healthcare assistant saw me walking on another day. My condition fluctuates and my issue wasn’t walking but getting out of bed because I had lost any core strength I had.
  • There was no help with personal care which would have been fine except my carers weren’t allowed onto the ward outside visiting hours. As a result I went days with my face not washed, my hair not brushed and my clothes not changed. It also meant I had to ask hospital staff to grab me things, to open bottles and to pour me a drink.  Some staff were fine with this, others less so but either way they had more important jobs to be doing.
  • There were no shower facilities for wheelchair users and I ended up using the one changing places toilet in the hospital to shower. This involved the cleaner repeatedly hammering on the door. I assumed it was someone needing to use the disabled toilet and rushed and kept shouting that I was only going to be a few more minutes. Finding out it was the cleaner really hacked me off…
  • Once I was able to get out of bed myself, it was in theory easier to go to the toilet.  Except because of my disability, I couldn’t physically lock the door…
  • Any preexisting health issues were ignored and I was denied morphine flat out on one occasion.  I was told because I was being discharged the next day I couldn’t have any because they don’t release people with morphine.  Even though it was unrelated to why I was in hospital and even though I have morphine at home.  I was given paracetamol and left to suffer.
  • There was a dramatic lack of understanding about my condition which would be fine and I’m happy to explain it.  However, what I don’t like is people who pretend to know about it.  There was a nurse who said she knew all about ED (which to me means erectile dysfunction or emergency department – I have Ehlers Danlos Syndrome…) and then was shocked when she discovered I was hypermobile…  There was a doctor who acted like he knew all about EDS and then couldn’t understand why I have morphine on prescription…If you don’t know, ask or at least google!
  • There was also an assumption that the staff knew best even when it came to issues like how to help me out of bed – if you hold my hands and pull, my wrists may well dislocate…
  • There were also environmental issues that would have bothered me even if I didn’t have a disability but possibly affected me more so…
    • I was suffering from migraines and these were exacerbated by harsh lighting and I would ask to have my curtains left shut to block some of it out.  These were repeatedly opened and I couldn’t get up to shut them.
    • Lights are routinely turned on at night which I understand but sleep is good for healing!
    • Being woken up at numerous points in the night to have blood pressure taken etc even once we’d reached a stage where I could have been sent home if my home care was in place.
    • Incredibly strong air freshener

I haven’t even talked about needing specific mattresses or other equipment such as a hoist or a feeding pump.  For another person’s experience, check out Emma’s blog – and look at other posts too whilst you’re there!

I’d like to end by saying that there were some amazing members of staff who were working with a lack of time and a lack of equipment and providing exceptional care despite that. There were a couple of people on my ward who I looked forward to seeing and would feel relief when I knew they were coming on shift.