(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.

What we call nature and why it matters

What is nature is a difficult question imbued with cultural associations and assumptions and so to limit this to one blog post, I’m considering this from a broad UK perspective.

Nature is cast as a thing out there that we must head out into.  It is a wild and tangled space complete with certain iconic creatures, preferably rare and hard to see.  It is the peaks of mountains that one must summit and conquer.

It is this view that means we so often overlook the space around us, privileging a weekend hike into nature and forget that we are nature and we are embedded within nature and we cannot escape nature.  Even in the densest city, ‘nature’ can be found, and found thriving.

We step over plants pushing through cracks in concrete, ignoring their force to survive and thrive.  We move past walls with delicate purple petals clinging on.  We don’t see the pigeon that is pecking away on the pavement.  This could be argued, because of the specific idea our cultural has created about what nature is.  So let’s start by unpicking those assumptions.

Raymond William wrote, in 1976 that:

Nature is perhaps the most complex word in the language.

For many people, nature is intrinsically linked with wild and wilderness and with being alone and surrounded by countryside.  This is an association which is prevalent in our culture so I do not seek to disparage those people, but I do hope that eyes will be opened to urban nature.  Increasingly, magazines, newspapers and books are speaking of urban nature with the merit it deserves and we have to remember that Britain has very few places untouched by human hands.

Stephen Moss speaks of the agricultural history of our landscape in his book Wild Kingdom; “everything I can see, all around me, has been shaped – and indeed is still being shaped – by human hand”.  We have historical land boundaries, enclosures, ruined buildings, plough marks, forests which no longer stand, trees which have been coppiced, pastures where sheep have grazed for hundreds of years… All of which are the result of human land use.  Very few parts of our country escape this, so the wild nature which many of us in the UK idolise, has not really existed for thousands of years.  Our focus on this untouched idea of nature is detrimental to ourselves – Cynan Jones notes that a fascination with far off wilderness can blind us to the local wildernesses.

And local wildness is beautiful.  Just think of the dandelion which forces its way through the crack in the pavement and persists and perseveres.  Mark Cocker talks of the overlooked inner-city wasteland where nature thrives.  He explains, whilst this “completely subverts our conventional notions about beauty in landscape… almost every other part of the country is intensely managed at a physical level and we are, in some sense, guided towards a particular intellectual and emotional response.  Even in nature reserves and national parks our attitudes are largely prescribed. By contrast, urban dereliction is entirely free of these restraints. Uncared for, unmanaged and unintentional – it is, in a way, the nearest thing to true wilderness that we possess.”

***

“We must learn to love the narrow spot that surrounds our daily life for what of beauty and sympathy there is in it.  Fore surely there is no square mile of earth’s inhabitable surface that is not beautiful in its own way, if we men will only abstain from wilfully destroying that beauty.”
– William Morris

With the exception of the word man, I agree wholeheartedly with Morris’s sentiment. We know that in one square metre of English woodland soil you can find more than 20,000 mites, 15,000 springtails and about 1,300 maggots (Erica McAlister) as well as many other species in the soil and the space and flora above.  Many people overlook the space around us, privileging a weekend hike into nature and forget that we are nature and we are embedded within nature and we cannot escape nature.  Even in the densest city, ‘nature’ can be found, and found thriving.

By rethinking what nature is and isn’t, we can create a practice of connecting with nature that is vastly more inclusive.  It is more inclusive for people with disabilities, for people who may be financially excluded, it covers class and race and gender.  By focusing on where people are, as opposed to where they might go to, we can see that connecting with nature is accessible to virtually every person who wants to experience it.  Connecting people with nature helps more people to care about the natural world and it is ultimately an emotional connection that will help people to change their behaviour on an individual level and seek change on a more institutional level.

Of course, it is not enough to tell a disabled person that they don’t need access to the nature out there because they have nature all around them.  Of course, we still need to identify and break down the barriers that prohibit or limit access to forests, national parks, nature reserves and so on.  That will be the topic for my next blog post.

 

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.

The pros and cons of being my carer

Recently I was thinking about the role of my carers and the pros and cons of their jobs and having spoken with them, the pros and cons weren’t necessarily the obvious ones.

There are some very obvious pros, for example going to the theatre with me, going on days out, going on holiday…  All of these things are something I need assistance with and therefore a carer gets paid to go with me.  When we aren’t out and about, we’re normally at home watching netflix or youtube and I choose what to watch based on who’s on shift with me.  I’m great friends with my care team and that has to be a pro… at least I hope so!

When it comes to the cons, you might expect somebody to say emptying the commode, showering me or washing my period pants.  You might think it’s hard having someone ask you to do something every few minutes or having to anticipate someone’s needs.  To be a third wheel at times or having to go to things and places that you don’t want to.

But the reality is, having spoken to my carers, the things that they see as cons are dealing with spiders and coping with my nightmare neighbours.  Starting work at 8.30 was also mentioned with the caveat that this would also be the case for most jobs so isn’t care specific!  This morning I did not want to wake up, but I have to get up by a certain point to have my medication, and my carer hated having to interrupt my dreams.  In a similar vein, it’s hard for them to see me anguish over asking for help on bad days for things I can cope with on better days, and watching me suffer with pain when there’s nothing else that can be done. 

Essentially, the harder bits of my care are because my team are empathetic, kind and caring people who find it hard to see another person suffering.  

Of course, this isn’t the reality for many carers who are overworked, underpaid and expected to see numerous clients in one day.  I am lucky in that I have a small care team who work with one or two clients and so we are able to build that relationship which is important.

The last two years

Two years ago, September 2017, I stopped being able to swallow properly. My diet suddenly dropped to include less than a handful of options. This was to be the start of a significant change in my health and life.

In November I was admitted to hospital for the first time in my life. For three hellish weeks. I repeatedly explained to numerous people what was going on with my swallow. Repeatedly I was disbelieved. Tests came back saying I was fine and nurses reacted by telling me there was nothing wrong so I could swallow. I had my first NG tube and when I got distressed and questioned the level of discomfort I was experiencing with it the nurse told me I should have just eaten so I wouldn’t have needed it. It was clear I wasn’t being listened to with open minds. The first 16 or so days I was in hospital I was getting no food and very little (very very little for me) fluids and no medication. So that included no pain relief, no antidepressants and no antihistamines despite horrific allergies. No one seemed to understand why I thought this was a problem. I would later be sent home with ‘magical medication’ which would surely fix me and told it’d be reviewed in four weeks.

This meant four weeks with very little food because the tablets would take time to work, if they worked at all. No one seemed to understand, or at least acknowledge, why I was distressed by this. Everyone was just focused on how great it was I’d be home for christmas. There was no back up plan.

Six weeks after that, in what my nice gastro described as ‘a bit of a pickle’, I was finally re-admitted to hospital. By this point I was once again starving, dehydrated and was violently sick every time I moved. I was so ill that they couldn’t give me the NG tube I had begged for through tears just two weeks earlier. Most drs still didn’t believe me. One refused to tell me what the plan was once an NG tube was in because I wasn’t co-operating (I was violently sick when they tried to put the tube in but she read that as uncooperative). She had earlier decided that the way forward was refering me to the eating disorders team which I know is a long wait and I also repeatedly told her it wasn’t a relapse of my anorexia. She just kept asking how would I know? She went on to get me assessed by the mental health team and thankfully they realised I was in a drastic situation and was reacting much as most people would, that my mental health was suffering but wasn’t causing my swallowing issues.

I have since found out that in the run up to that second hospital admission j was hallucinating . I knew things were bad but until recently I didn’t know how bad…

Eventually the good dr won out and I was able to get the PEG tube that we both knew I really needed. The first try failed because my stomach was in the wrong place … so it took a second attempt to get the tube in me. During this hospital stay I had multiple days of being nil by mouth or tube, more days like that than days being able to eat or drink I think, because various tests were being run. They were concerned about my blood sugar levels which was ridiculous because if you havent eaten in months, they were going to be squiffy…

Whilst still in hospital I had issues with my care company and it became clear I needed to change. This has been reiterated by the much improved care I’ve had with the new team. But getting used to new staff, getting people trained up etc is all tiring, hard work. And I was recovering from starvation and all my EDS symptoms got worse whilst I wasn’t able to eat. I also gained new symptoms.

One of these new symptoms was wobbly lenses in my eyes. This limits how much I can read at once, how well I cope with movement and can lead to me feeling very seasick when all I’ve done is scroll through instagram. Yet another thing to adapt to and change to cope with. I now have pink tinted glasses which help a lot but I still have symptoms because of my eyes and I can’t see distance as well as I used to, something that means it’s incredibly difficult to use binoculars and which affects my ability to see through my camera viewfinder.

I also lost physical strength as well as awareness of my body. When I was in hospital the second time, if my eyes were closed, i didn’t know if i was laying down or sitting up. And that is something that hasn’t fully recovered although is vastly better than it was.

Today, two years on, I am incredibly grateful for my feeding tube. I no longer have to worry about my calorie intake, or how I manage to maintain my high fluid needs or how im going to swallow my medication. I have figured out the random things I can and can’t eat or drink and I’m happy with where things are. I have the energy to get out of bed, to leave the house and even to go on holiday. Everything has changed significantly. And what I’m most grateful for is that I got to share my two year ‘anniversary’ with my best friend who had shared a room with me almost exactly two years ago. A couple of weeks after my swallow broke, she put up with my odd eating and awful exhaustion. Months later, despite being 200 miles away, she spoke with my doctor and fought with them to get me the care I needed, and I love her.

Laughing at my nightmare

I have recently discovered Shane Burcaw and his wonderful sense of humour.  Quoting from his blog, I will let him introduce himself:

“I’m Shane Burcaw. I’m 26 years old, and I have a disease called Spinal Muscular Atrophy. I have been in a wheelchair since I was two. I love to laugh, and my life is pretty funny. Allow me to share…”

And if you want to take him up on his offer to share, you have a few options.  There are his books, which I read incredibly quickly, shared bits of out loud and on instagram, and have recommended to many people already.  There is his blog of course and the YouTube channel that he shares with his fiancee Hannah.

book1

And if you find him as funny and entertaining as I do, consider donating to his charity which raises money for other people with Muscular Dystrophy and helps them live their best lives.

book2

One thing from Shane’s blog that I love is the ‘What Made Me Smile’ posts and in the spirit of that, here are the things that have made me smile this week:

  • seeing the sparrows that visit my feeder get ready for winter with their fluffy feathers
  • thai food with a couple of awesome people
  • finding solutions to a couple of disability related problems, i do love a good problem solving moment
  • teaching a friend to knit
  • watching a carer read Shane’s first book and seeing her smile and laugh. NB I am not creepily staring at her as she reads!
  • getting my copy of Inside History which focuses on medicine and surgery for issue 1!