Making space for the grief

I really like nature writing, and I especially like nature writing by women. I was recently reading an anthology In her Element: Women and the Landscape  and one of the pieces really resonated with me

The piece is called Walking Through and it’s  written by Christine Evans

She writes about how much she used to love to walk, how much joy she got out of it and then she broke her ankle, badly, in such a way that walking for pleasure was mostly no longer an option for her.

My body has always been built wrong and it always hurt (In ways I didn’t know weren’t normal for a long time, I thought bodies were just  supposed to feel like that) but I was still pretty active when I was younger and I used to do a lot of walking until my legs pretty much gave up on me. I walked the in the Brecon Beacons, I was a silver Duke of Edinburgh expedition trainer, I used to take my dog out everyday along the cycle path. I always used walking as thinking time, as time to sort and process my thoughts, and as a way of noticing and appreciating the world around me

And it’s like, I love the Superhero machine, it changed my life, I am absolutely accepting of my disabilities and that they will be part of me forever. There’s a lot of rhetoric about being disabled isn’t a bad thing, about how disabled peoples live are just as active and full as able peoples live and I totally agree with that and there are totally conversations I would never have with some able bodied people about what I’ve lost. But I think somewhere along the line I forgot to grieve the things that I did lose, the ways my life has changed through disability, I think its easy for people who are disabled later in life to push down the grief because we have to prove to able bodied people that being disabled isn’t terrible (which it isn’t) and if we have emotions that can be read as negative we are used as weapons by the able bodied world to PROVE being disabled is a terrible thing. Which is clearly abelist bullshit

And I think, it’s okay to admit to the sadness, the grief that I will never again stand on a mountain looking out over the horizon after having walked up it with my legs, that while being disabled isn’t a terrible awful thing, that while the superhero machine is fantastic, there are still things that I used to love doing that I just can’t do any more. It’s okay to own that, admit that, to make space for that.

The Grazing Ground Tea Room Caerphilly

This is my absolutely favorite place to go for a coffee or a cup of tea in all of Caerphilly and Cardiff. It’s on the main high street and for people using public transport it’s probably easiest to get a bus to the train/bus station and roll down, for drivers it’s probably best to park in The Twyn car park and roll up

It’s very prettily decorated the decorations are usually themed for the season, this left picture was taken around Easter time hence the bunny bunting and the daffodils! They are very community focused, they give away coffee grounds for compost, they have a community notice board, and they support local craftspeople. (A chalkboard sign in the picture on the right says “Crafts for sale. All made locally” and is surrounded by items of fabric craft) They also raise money for different charities.

 

The venue is airy and light has big front windows that are open in the summer,  There is enough space between the tables for me to maneuver in.  The table are different shapes and sizes , several of which are big enough for me to roll the wheelchair under and sit comfortably

This is a pic of me and my friend Molly having a cuppa, I look kind of demonic in this picture but hey ho! Speaking of my friends, myself and a lot of the friends I go there with are visibly some flavour of queer/gender-nonconforming and unlike some places I have been to I have never felt that the staff have had a problem with that

There is a slight upwards slope to get through the door but it’s fine if you are expecting it, The door is also not always easy to open in a wheelchair but I’ve never been there when a member of staff or another customer hasn’t offered to help me if I seem to be struggling (Also on warm days in the summer it is often propped open.) There is one toilet and it is wheelchair accessible without needing to be opened by a radar key, it has a baby changing table and is always clean.

 

They do lovely homemade food and almost always have vegan options (The chickpea curry I had when these photos were taken was lovely) They have an enormous selection of specialty teas, and they have soy milk for coffee/hot chocolate for people who are vegan or lactose intolerant. Some of the cakes are also gluten free

 

The owners and staff are always genuinely warm,  friendly, and helpful.

I entirely 100% recommend this place it is awesome!

The Grazing Grounds Facebook page

Wheelchair Accessory Update

So one of my first posts on this blog was a list of accessories that I found useful for the superhero machine, It’s been a year and as I’ve got more comfortable and more used to the wheelchair some of those accessories have changed so I thought an update post might be useful for my readers.

Probably my favorite bit of kit is my arm protectors. They are useful for when it’s muddy or is actually raining to keep whatever i am wearing clean and dry. I even use them when I have my cagoule on because they are more heavy duty and will cost less to replace. they are also good at protecting my clothes if i’m wearing anything delicate or snaggable that I don’t want to catch on the wheelchair.  I bought mine from MobilityDirect2013 on Ebay. I no longer use the florescent wrist straps to hold my sleeves up because these are much more reliable and versatile

 

I was actually quite happy with the cute little water bottle I was using but my partner dropped it and it cracked so I needed another one. This one seems quite expensive for what it is but I like it a lot, the long handle means it can slide safely and securely on the back of my chair and the tube and mouth piece mean I don’t need to take it off to drink, so no risk of me dropping or spilling it. It also holds a litre of water which is useful if I’m going to be out for a long time or rolling a long way. I bought mine from Ableworld inPenarth for ten pounds.

 

I still use the same gloves, the snack box, and the arm purse that I wrote about last time. I also still use the phone wallet for my phone, keys, and inhalers but i find it easier to wear it on my ankle rather than my wrist.

I also always carry baby wipes, small bags to put dirty baby wipes in, and anti-bacterial gel, all in case I roll over anything disgusting and can’t get to a place straight away to wash myself and the wheelchair

 

Thinking about accessibility

There are a lot of innovations and breakthroughs in health and healing going on and I think this is awesome, and also a lot of innovations in mobility/accessibility aids. While I absolutely think this is something to celebrate some of the rhetoric and subtext around it is making me twitchy. There seems to be a lot of “and then no one will be disabled!” going on. As if disability is one thing or one set of things (like if you can’t walk it’s because you are paralyzed, if you have vision issues they are all cased by the same thing etc.) without taking into account that there are lots of reasons  peoples bodies don’t work. Also I feel like society is saying “and then there will be no disabled people” like that’s a good thing? like for lots of us our disabilities are part of who we are and have shaped us as people.  There’s also a push to make disabled people seem as much like able bodied people as possible? Also it doesn’t take in to account that there will always be disabled people and where is a place for them in a society that is endlessly trying to fix us, that thinks we should be fixed at any cost?

There also seems to be no understanding among lay people that tinkering with bodies even if it’s a good thing, has trade offs and side effects, like it’s very rarely “bam! you are all better now” There are going to be times when disabled people don’t want to live with those side effects or make those trade offs, and they have to be free to make those decisions without feeling they are being judged for not wanting to get better, not trying hard enough, and all that crap we already get but, which will be increased tenfold when there are cures able bodied people deem “acceptable.'” Like I could just walk with a stick, it would exhaust me and leave me in constant pain but somehow  able bodied people think that’s better for me than using the wheelchair, which doesn’t leave me in pain and exhaustion and massively improves my quality of life.

And there’s a whole new generation of mobility aids being made, exoskeletons that walk for you, wheelchairs with caterpillar tracks that can go up stairs and just from a geeky tech perspective they are really cool. Now I support wholeheartedly anyone using any aid that they want to, that works for them, and as for me, I love my wheelchair so much, I love it so much that i named it the Superhero Machine because it makes me feel like a freaking superhero.

But even my wheelchair, which is a pretty basic manual one, wasn’t cheap, my friends clubbed together to buy my spoke guards because they cost £100 a pair, and all the accessories that I need add up, two pairs of cycling gloves, rim grips so I don’t loose control going down hill, a set of lightweight waterproofs, a waterbottle, bags for storage, it all adds up.  I also have a set of reasonably expensive bike lights, which while not a total necessity definitely make me feel safer if i’m trundling round Cardiff in the dark. And it makes me wonder how freaking much all these new mobility aids are going to cost and who is going to pay for them, especially in the current economic and political climate where you pretty much have to be dead to be registered disabled. It is absolutely going to be a two tier system where people who have private healthcare or are otherwise wealthy can afford state of the art accessibility aids do so and those that can’t don’t and are penalised by society for it. I don’t begrudge the money being spent on  research for these things but I do begrudge that the same amount of money is not going into making society accessible for disabled people  (if everywhere had ramps, we wouldn’t need  wheelchairs that can climb stairs)

Yo!Sushi in St Davids shopping Centre Cardiff

My friend took me to Yo!sushi to cheer me up after a disastrous bra buying experience. It was pretty delicious.

it was easy to get into and while most of the seating is booth type there are tables with removable chairs so wheelchairs can get under them. The tables are a nice height too. It also has a nice big accessible toilet.

I am a very clumsy eater, even with a knife and fork I spill food all down myself so chopsticks are really not an option for me (and I have tried to learn to use them, not happening) So I asked for a knife and fork but they don’t have them, but what they do have is what they call “easy chopsticks”

  

Basically they are two broad flat piece of bamboo that slot together so that you can then use as pincers/tongs, they also come with a bamboo spoon. These worked really well for me and saved me from making lots of mess. They felt really nice in my hands too.

My dining companion is vegan and they asked the server to point out what on the menu was vegan, instead of that the server gave them a spiral bound book which shows clearly not only which dishes are vegan and vegetarian but also which common allergens each dish contained which I thought was pretty awesome. There is an online version of this here

Generally, the restaurant was clean, the staff were helpfull and the food was yummy. I definitely recommend it

Traveling accesories

So I’ve had the wheelchair for  about two months now and I’ve more or less worked out what little extras I need  for easy comfortable traveling. Obviously other people will have different needs but these are the things I’ve found useful.

If at all possible do not buy your accessories from places that specialise in wheelchair equipment because they will be much more expensive than they need to be. I try to get as many of my accessories as I can from bike shops, outdoor shops or ebay.

 

Wrist wallet

this is just a neoprene wallet on elastic that fits round your wrist and is big enough to fit notes, coins, and a small set of keys. I bought it from ebay for about five pounds

 

Arm Phone holder

 

This has several pockets one in which I put my phone and one in which I put my reliever inhaler, my RADAR key, and my house keys. It attaches with a velcro strap, it can be kind of annoying for my sensory stuff sometimes but i’m usually okay if i attach it over my sleeve rather than straight onto my arm. This cost me five pounds from ebay

 

Reflective Velcro Straps

I bought these to stop my jacket/jumper sleeves falling down my arms and getting dirty or in the way when I’m wheeling, I got them from the local bike shop for about three pounds. They are unisize and  you need to cut them to fit you (I kept the excess reflective strip and will eventually stick it on the superhero machine)

Gloves

 

 

I use two pairs of gloves. they are both cycling gloves and are both padded on the palms and thumb pads

One heavy duty pair with fingers for outside/long distance traveling. They are Endura make and I bought them from a bike shop for £17  I like them a lot, comfy and hard wearing. Possibly you can get them cheaper online but I was in a hurry for them. (if you don’t have rim grips you might not need the fingered pair but if you do have rim grips you will take the skin off your fingers without fingered gloves)

the other pair is  lightweight and fingerless  for inside and picking things up. These cost me about four pounds from ebay.

Water Bottle

 

 

Self propelling makes me really thirsty. So I always make sure I take some water with me when I go out. This cute little bottle cost me two pounds fifty from Tescos and is attached to my superhero machine bag with a very lightweight carabiner that I bought from Mountain Warehouse for about two pounds

Food Container

 

I don’t always take this with me but if I’m going for a roll in the countryside or anywhere there wont be somewhere to buy food I always pack a healthyish snack so I don’t end up starving ages from anywhere (and self propelling does make me extra hungry)

I hope this is helpful and gives you some ideas, I will also have posts in the future about useful wheelchair attachments,  suitable clothing, and  storage/bags for wheelchair users

Slimbridge Waterfowl and Wetlands Trust

Flamingoes

My partner had a week off so we decided to visit Slimbridge Waterfowl and Wetlands Trust  in  Gloucestershire for a day because we like watching animals, and It. Was. Just. Awesome. It was a really nice day, warm and sunny but not too hot. It was a weekday during term time so it wasn’t overly busy, but there were still lots of kids there (ones too small for school and ones on school trips I think) We saw and learnt about a bunch of awesome birds and got to feed some of them

At the entrance is a long but not particularly steep ramp which Paul, my partner, pushed me up but with puff and patience I probably could have got myself up. The people on the admissions were really helpful, warm and friendly  in a normal non patronising way, and I got a concession price of £9:80 instead of £12. 70 and Paul didn’t have to pay as essential helpers get in free.  The information booklets are glossy and well designed and cost £2.99 which seemed like a good price to me, and they have a clear map in them, and a coloured key to all the birds in them. We also bought two bags of bird feed at £1 each which also seemed like a good price

There are lots of birds (geese, swans, ducks) near the entrance that want hand feeding and will feed from your palm if you put a mound of seed in it. Most of them were very friendly but a few of the geese did the snake neck thing at the wheelchair (but it is gosling season so,)

Most of the paths are tarmac but some are gravel but it was a kind of gravel that made it easy enough to wheel myself along them, most of it is pretty flat and where there are gradients it took me a bit of extra push but I could still do it on my own. There was only one Hide that was too steep for me to push myself up and Paul had to do it.

All the Hides we went in had low enough observation windows for people in wheelchairs to see out comfortably, and a shelf with a bird book and binoculars attached

 

The View from the Kingfisher Hide

There are lots of gates but all of them are wide enough to get through easily and most of them are easy enough to open (Also I got the feeling that if Paul hadn’t  been there , the general public would mostly have been fine opening and shutting gates for me, people there were very friendly in a non creepy way)

 

One of my favorite parts was the Wader Shore,

I had an issue with getting out of the Wader Shore enclosure though in that large pebbles/gravel had been placed in front of the door obviously to fill in a dip, I found it impossible to wheel across it and Paul did not find pushing me over easy either.

We went to restaurant for lunch and that was pretty much the low point of the day to be honest, I was not impressed with the food especially for the price and the tables were not really high enough for me to wheel under so my legs got a bit squashed. Next time we will definitely take a picnic.

There are at least three accessible toilets that are big enough to turn round in in a wheelchair and do not need RADAR keys, however the toilet in the car park does not have a handle on the inside so was hard to pull shut.

We saw lots of birds we’d never seen before and we learnt a lot about them, which was pretty awesome.

Crane

Andean Goose

Goose

But the highlight of the day totally had to be the North American otter. The Enclosure around the Otter habitat was  entirely made of glass so small children and wheelchair users could see what was going on

 

it was just lovely to watch them playing with each other and dancing through the water. The talk on Otters  (which is given twice a day) was really interesting and informative and delivered in a friendly understandable manner. There are also Eurasian Otters, which are native to Britain, at Slimbridge but as they are nocturnal the chance of seeing them is not very high.

We stayed for about four hours and I probably wheeled myself half the time and Paul wheeled me the rest, there were quite a few things we didn’t get round to seeing which we will see next time we go. Overall this is a brilliant place for self propelled wheelchair users, it’s obviously a place that has really thought about accessibility. A small part of it is not accessible but that is clearly marked on the map and apart from that are only the little annoyances I have written about here

 

Slimbridge Waterfowl and Wetland Centre