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.

What my wheelchair vehicle means to me

I do have more posts about animals and death in the planning stages but my week away took a lot more out of me than expected so they are at the coming soon point…!

My week away brings me to the subject of this blog post, what my wheelchair vehicle (WAV) means to me, because without it the holiday would have been very different.

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I’ve had my WAV for nearly two months now.  It’s a Peugeot Rifter and both my electric and manual wheelchair fit in it which is a huge difference to only being able to take a manual chair in the boot of a car. The latter means that I have to be pushed by a carer. So what has my wonderful WAV let me do?

I went to Beverley to see the Wildlife Photographer of the Year exhibition.  Being in my electric chair meant I could move through at my pace without having to tell someone and I could see the pictures better as my electric chair is higher up.

We drove over to Hebden Bridge to see a friend of mine.  We went to Osmotherley to walk around Cod Beck Reservoir.  It was much more comfortable and less painful being in my electric wheelchair and it meant that my carer could walk along beside me which makes it much easier to talk to her!

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We went to Scarborough and because I was able to take my electric wheelchair, I was able to spend time someone without my carer being the third wheel.  Whilst I love my carers and they are great, I don’t always want them literally looking over my shoulder as they push me.

Of course the biggest thing that my WAV has made possible was my holiday.  We were able to drive down south, meet my lovely friend and do little day trips.  Again, being in my electric wheelchair makes a huge difference to my experience.  I am much more comfortable, less battered and bruised, am able to talk to my carer and can move around on my own. I no longer have to try and guide a carer into the position for me to take a photo – left a bit, right a bit, no back a bit… And my electric wheelchair is a little higher so when we go places like the zoo, I can see over the railings more easily.

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Without my electric wheelchair, we couldn’t have gone to most of the places we visited because for some reason all the paths were gravel which is incredibly hard to push a manual wheelchair through.  As it was, I did get stuck a couple of times with my wheels skidding.  In my manual chair, not only is it a nightmare for the carer doing the pushing, it’s painful for me and it undermines a lot of the enjoyment of the trip.

I am loving the freedom that my WAV is giving me and the ability to use my electric wheelchair wherever we go.  I am very aware that the benefits system has many faults but I am so grateful that I’ve been able to use mine with the motability scheme to get my WAV.

Bring on more trips and days out!

A short history of wheelchairs

As a wheelchair user, I started to wonder how my life might have been had I been born 100 years ago, 500 years ago or 1000 years ago and (assuming I actually survived) this would be very dependant on the types of wheelchairs that were available.  With this in mind, I ventured into the history of wheelchairs.

Early images of wheelchairs are found in stone carvings in China and on a Greek vase.  The former showing a wheeled transport device and the latter a wheeled bed for a child.  But despite these early records, the first known dedicated wheelchair was invented in 1595.  It was made for Phillip II of Spain and had small wheels at the end of the chair’s legs, a platform for his legs and an adjustable backrest.  It wasn’t self propelled but then again he was a king so was probably surrounded by servants anyway!

Sixty years later, Stephen Farffler made a self propelling chair which was mounted on a three wheel chassis and had handles on the front wheel which allowed the user to move without assistance.  The handles operated a bit like a hand bike…

Possibly the best known early wheelchair is the Bath chair, named after the city, not the washing facility.  It was created by John Dawson and had two large wheels and one small.  It was steered using a stiff handle but was very heavy and had to be pushed or pulled.  This version of the wheelchair outsold others in the early 19th century but it wasn’t comfortable and so adjustments and improvements were made over time.

In 1869 we have a patent for the first wheelchair with rear push wheels and small front casters, something we would easily recognise today.  Again, this model needed improving and a few years later, hollow rubber wheels were used, pushrims for self propelling were invented in 1881 and in 1900 we find the first spoked wheels.

Injured soldiers returning home from World War Two were more likely to survive certain injuries because of the discovery of antibiotics.  This meant that there was a sudden influx of people who had spinal injuries etc that would previously have killed them.  In turn, this meant an increased need for wheelchairs.  Depending on their injury, some of these veterans would have been unable to self propel and, having previously been active, would have found themselves dependant on others.

It was one of these soldiers, who was frustrated with his situation, who advocated for a better wheelchair.  This combined with Canada’s commitment to veteran support, resulted in a request to George Klein to build a brand new type of wheelchair.  After Canadian vets had been given their electrically powered chairs, an effort was made to engage manufacturers.  One of which was Everest & Jennings.

Harry Jennings built the first folding, tubular steel wheelchair in 1932 for his friend Herbert Everest.  They then joined forces to set up Everest & Jennings who monopolised the wheelchair market for years.  In 1956 they were the first to mass produce electric wheelchairs.  These were fairly rudimentary, had only two speeds and were very bulky but still, they paved the way for the plethora of electric wheelchairs we have today.

Whilst slightly off topic, it’s worth noting that 1952 saw the beginning of wheelchair sports and by 1960, the first Paralympic games were being held.  The increased visibility of people with wheelchairs alongside the more specialised uses for them, almost certainly aided the refinement and variety of chairs that we are now lucky to have.

Moving forward, in the second half of the twentieth century, developments to the wheelchair happened quickly.  Motors were added to standard wheelchairs, then lightweight aluminium was used and the availability of plastic inevitably led to further innovations. Further, as computer technology boomed in the last fifty or so years, we have seen these enhance and improve the available powerchair technology.

Today we have wheelchairs that can be used in sports, that are very lightweight, that can raise the user up so that we can sit at bars, that can be controlled in different ways and which ultimately allow many more people control over their movement.  Wheelchairs, powered or not, are highly customisable and although I haven’t sat in a pre-20th century one, I can imagine, are significantly more comfortable and allow for a better quality of life.

Aside, please don’t use the term wheelchair bound.  A lot of wheelchair users can walk or stand, and even those who can’t, aren’t tied to their chairs.  It also makes it seem like wheelchairs are a terrible burden and whilst they aren’t perfect, they are amazing and significantly improve people’s lives.

Links

How using an electric wheelchair can be exhausting (but I still love mine)

Having a disability can mean that simply going outside your home is more taxing than for non disabled people.

There are different things which take their toll for visible and invisible disabilities but for this blog post I am going to focus on my experience as an electric wheelchair user.

I don’t want this post to put anyone off using a wheelchair, they are great for enabling freedom and independence.  Rather I just want people to think about how they treat friends, family and strangers they pass in the street.

It starts before you even leave the house…

There is the planning required before you leave.  You have to ensure your chair is charged.  I can’t unplug my charger so I have to make sure that it’s unplugged when a carer is here.

You have to think about how you are getting to wherever you’re going.  If you want to go by taxi or train you have to book that in advance.  You can’t be a spontaneous wheelchair user unless you have a car…

You have to check access in advance and often this isn’t information available online which means you have to contact the venue which can take it’s own toll.

You have to get into your chair and in my case, most of the year get into my wheelchair cosy, which is considerably more involved than just grabbing a coat and walking out.  I also have a blanket which gets tucked in around me under the wheelchair cosy as I get so cold.

If you know the area, you have to mentally run through what you know about drop kerbs, pedestrain crossings, shop entrances etc.

If you don’t know the area you have to just wait and see which can be exhausting.  You’re constantly looking for drop kerbs and half waiting to get stuck on a pavement and have to retrace your route.

And then there’s illegally parked vehicles blocking pavements or drop kerbs.  Wheely bins and recycling boxes left in the way.  Yesterday (whilst I was running late for my art class) I had the triple whammy of a blocked dropkerb, a lorry unloading onto the pavement and scaffolding.  And I was made to feel shit because I wanted to get past.

You have to make sure other people do not walk into you as they stare at their phone because then they get pissed at you.  I have had someone get annoyed with me because my chair was quiet and she didn’t hear me coming.  I wonder if she’d like me to wear a bell round my neck?

You get stuck behind people who are weaving all over the path and ignoring your polite excuse mes.  As a wheelchair user, you can’t possibly be in a hurry.

And once you’re where you’re going, you have to ask shops to get out the ramp, if they have one, or strangers to reach things off the higher shelves.  If you try and go for a coffee, you often have to get help moving chairs or carrying drinks.

If there isn’t an appropriate toilet, you mentally have to pace your fluid intake.  If there is an appropriate toilet, you have to go through the process of getting out of your wheelchair and accessories and back in again after.

You have to deal with all the comments from strangers.  “Witty” jokes, inapprioriate prying questions, being told how brave you are etc.  You have to deal with the “Does s/he take sugar” approach*.  You get stared at and pitied.  You get utterly unhelpful suggestions to cure your disability.  And offers of prayer.

You are crotch and bag height and have to avoid getting hit.

You have the perfect opportuntity to take all your belongings out with you – just load up the back of the chair – but unless you can easily get in and out of your chair, you can’t actually reach any of your stuff.

Obviously you get cold because you are sitting still and you get wet when it rains if, like me, you can’t put on your own wheelchair waterproof.  And the rain drips down the chair and down your back and onto your seat…

None of this is to say I don’t like my electric wheelchair, I love it, just be aware of all the mental and emotional energy it takes for me to leave the house.  If I say I’d rather meet you for coffee at mine than go out, it’s not because I don’t want to do that interesting thing you suggested, it’s just that sometime the task feels too great.

And this is just the wheelchair related aspects of leaving the house with a disability.  And I’ve not even touched on the coming to terms with needing a wheelchair side of things…

*People talking to the person with the wheelchair user about the wheelchair user instead the wheelchair user themselves.

Wheelchair walks!

Firstly, I know it’s not going for a walk when I’m being pushed but going for a roll or a push sounds stupid to me. Please do suggest better alternative language though as saying I’m going for a walk makes me feel like I have to explain that I’m not actually walking… The pickles of language… 

I’ve been on a couple of woodland walks recently (which require driving to as opposed to walks round my local area) and wanted to write a bit about how they fare when you’re in a chair.

For context, because both of these required driving to, I was in my manual wheelchair and I can’t self propel at all so my carers have to push me.

Dalby forest

£8 per car, no disabled discount…  This does not endear me to them. Especially given there are limited accessible paths…

We followed the Ellerburn Red Trail which was described as being suitable for wheelchair users (actually it was the only trail I could find that was described as such and again, this makes me annoyed at the £8 fee – able bodied users have access to the entire forest for their £8 a car…).  It wasn’t too bad but the path was quite bumpy and in one part a bit overgrown and I got plants in my face…

Other than a brief bit of river, there wasn’t very much of interest on the route…

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However it does have disabled toilets (not great ones…) and a cafe.  There were also picnic benches with wheelchair spaces and a lovely man offered to sit on a wall just so I could use it (I didn’t take him up on it, that felt mean, plus I was cold and wanted to be inside…).

Moorlands nature reserve

But this, this was amazing!  There are no toilets, no cafe, parking is on the side of the road but it was free. And the path was much better, I didn’t get leaves in my face (although there were a few spiders webs instead…). There was lots more to look at and it was so quiet. I’m definitely going back with a picnic or a flask of hot chocolate (depending on the season). It’s also a lot closer to York which is important when I’m paying 45p per mile to my care agency.

I was so suprised at how accessible it was!  There was a kissing gate to get in but it was fairly big and I’ve seen a review on Euan’s Guide of someone in a mobility scooter going.  The path was mostly made of tree litter so I can imagine it might be harder to get round if it was wet.

We went round in about an hour which was a good length of time (given I tend to get care in blocks of three hours) and if we’d stopped for food or drink or whatever we could easily have been there much longer.

Dogs and bikes aren’t allowed because it disrupts the wildlife and we only saw one other group of people!

Unlike Dalby Forest, I think you could easily go back time after time and see new things each season, like the vast amount of Rhododendrons!

Wheelchair funding

I’ve talked about this before but I think it’s such an important issue it needs it’s own blog post.

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Heeby, my beautiful wheelchair, who helps me leave my flat

Wheelchair funding is hard to access.  I had to use up my savings to buy my chair.  It cost me £7000.

The NHS varies from area to area but in so many areas, as far as I can tell, you don’t get NHS funding for an electric chair if you can walk around your home. Whatever size your home is.. Which means if you live in a mansion which you can’t walk around you’d get funding but if you live in a flat like mine where ten metres is probably your maximum walk in reality, you don’t get an electric chair.

I can’t have a manual wheelchair cos I can’t self propel and I can’t have an electric wheelchair because I can walk round my home. Except, if I hadn’t bought my electric wheelchair and had attempted to walk outside a little, I wouldn’t be able to walk round my flat. I can only get round my flat because my wheelchair gets me round the rest of the world. Without my electric wheelchair I could only go to the drs (it’s literally opposite my flat). I wouldn’t make it to the shops round the corner.

And think about what that would do to me. If i couldn’t leave the house, I wouldn’t have been able to work, shop, go on day trips or do very much at all. If i couldn’t leave the house, my mental health would have deteriorated significantly, costing more in services. All medical appointments would have to be in my flat or using hospital transport which costs money.  Without a wheelchair I would have taken far far more out of the economy than I put in. So if money is your argument, it doesn’t stand up.

We should not be in the situation where I’ve blown my savings on my wheelchair, where people are having to apply to charities for wheelchair funding or where people are fundraising for their wheelchair.

Wheelchairs give us freedom. And because of this, I’ve contributed to Vicky’s fundraising efforts. Like me, she has EDS and like me, she needs to use an electric wheelchair to maintain her independence but the NHS won’t help.  It’s heartwrenching that this is the third or fourth appeal for help this year that I’ve seen on my list of people i follow on twitter.

I’d strongly encourage you to contact your local healthwatch or your MP to ask them to raise the issue of wheelchair funding criteria.  To my knowledge, there hasn’t been a satisfactory response to why so many people are stuck in a place where they get no support because they are too disabled for one option and not enough for the other.

Paying for wheelchairs

Note: This is for the UK

If you are looking for wheelchair funding, start with your local wheelchair services.  If they won’t help and you’re working, try access to work.  You will probably be required to pay a proportion of the total cost if you go down that route.  This is on the basis that you will be using the chair outside work so you pay a bit, your employer pays a bit and access to work pay a bit.

If you get enhanced mobility PIP then you can explore that route.

If none of these are suitable, you are left with grants and fundraising.  In terms of grants, turn2us.org.uk is a UK search engine for grants.  There are a lot of very small pots of money out there for very specific people or causes.  A made up but based on experience of in depth searches for clients: if your dad was a miner who played the violin and you’re a single mother you might be able to get a grant for the cost of children’s Christmas presents.  There’s also a list of possible grants over on Disability Grants.

Freedom!

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Today I got my wheels which is so much more exciting than when I passed my driving test. My new wheelchair is amazing. It’s smooth, fast, comfortable, adjustable in 101 ways, has purple rims… But most importantly it’s going to give me back some of my freedom (once the council have fitted an electric door opener so i can actually get out the building…).

HOWEVER it cost me £7000.

Until me and my sister got sick, I’d assumed that the NHS provided things like wheelchairs. How wrong was I?! Each NHS area is allowed to make up their own policy but for York, and other areas as far as I can tell, it’s ridiculous.

Can you safely self propel? No? You can’t have a manual wheelchair. Fair enough I guess, but having a transit chair would be better than no chair. At least then people could take me out.

Can you get around your home without needing a wheelchair?  Yes? Then you can’t have an electric wheelchair. Even if you also can’t have a manual chair and can’t walk outside your home.

Yes. This is the head scratching, puzzled face moment. If my shoulders and hands were better I could get a manual chair. If my legs were worse I could get an electric one. But right now, I can’t have anything.

I’ve been lucky and borrowed my sisters old electric wheelchair for six months which means I’ve been able to continue working and having some kind of a life outside my flat.  I also got given an old manual chair by one of my carers. She had it for a relative who passed away so it was no longer needed. This has meant I can go out with friends and carers on day trips, shopping, hospital appointments etc.

I was also lucky enough to inherit a little bit of money so have used up my savings to buy my electric wheelchair and a more suitable manual chair.

But I know that so many people won’t have had these resources and will be facing day after day stuck inside their home with no end in sight which is horrific.

If you’re having problems funding a wheelchair the main options seem to be Access to Work (you’ll be required to pay a proportion as will your employer) and charity grants (search http://www.turn2us.org.uk to find out what you can apply for).

If you’re concerned about the state of wheelchair services in Britain, you may like to visit Right Wheelchair and pledge your support.