Crafting with a difference

Hello, I’m Louise and this year I wanted to show people that it’s still possible to create beautiful artwork with a progressive impairment like Muscular Dystrophy.

I have Limb Girdle 2C which is similar to Duchenne. My muscles have gradually lost their strength affecting almost every part of my body.

I’ve been crafting for for around 25 years and over this time I’ve had to adapt to losing the use of my body – but I’m still able to make hand crafted items.

Sometimes I have to shop around to buy products that are easier to use or decant media like glues and paints into different bottles. My grip is barely strong enough to hold a pen and I can’t bend my finger tips to pinch hold things well. I’ve got round this by using tweezers as prosthetic finger tips.

Other times I have to adopt a different method compared to someone with full hand use. Not being able to lift my arms up and moving my hands by crawling with my fingers across a surface, means I have to be very organised in my technique. e.g. Always painting an item or adding delicate details from the top down so I don’t drag my hands over these areas.

I work primarily in paper and mixed art media making dimensional greeting cards, pictures and gift card voucher / money holders.

These hand made items then go on sale in my Etsy UK shop (OhHowLovelyGifts) to raise funds for three charities that support adults living with MD. I’ve also set up a Facebook page to showcase my work and chat with buyers and crafters.

I get so much enjoyment from seeing them come together and the lovely comments from people who receive them. I work with my personal assistants who do a lot of the practical things for me.  They find the materials (I point to photos of my materials kept on my phone), pass me items, open bottles and feed things through my cutting machine. Describing what I need is very tiring so it can take me many days to make a greeting card – often over a few weeks. It might be slow going but it’s incredibly rewarding for both of us.

When I lost the ability to breathe properly and started using a ventilator, the nose piece kept blowing my paper and art materials across the table! It’s funny the first time round but not when your working with fine powders!! My husband adapted it for me so it blows away from my work surface. Sometimes you have to think of ways around things – do things differently through invention and modification.

I would encourage anyone to have a go at paper crafting because of all the benefits it can bring. Creating art is good for the mind, gives a sense of accomplishment and is immensely enjoyable .

The three charities I’m supporting are:

  • Muscular Dystrophy UK

http://www.musculardystrophyuk.org/

  • The Neuromuscular Centre

http://www.nmcentre.com

  • DMD Pathfinders

https://dmdpathfinders.org.uk

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Easter Sunday at Bredgar and Wormshill Light Railway

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Easter Sunday was a misty, rainy, damp day and the drive up to Bredgar and Wormshill Light Railway in Kent was like a scene out of Jurassic Park. Up a hill, mist rolling around the distant tree tops, drizzly … then past fields of long grass. However, not a single raptor did I spot so we found the railway and parked up in the designated field.

It’s only open on a few Sundays in the year – a private 2 foot gauge line on an estate that is definitely a big boy toy for enthusiasts. They built some stations, signal box, engine shed, workshop and a turntable to pootle down the line to a wood and back again.

Alas, no discounts this time – £10 for adults and £4 for our nephew. Not cheap really. The location is pleasant enough, with a toilet block, gift shop and cafe which told us the special was hot buttered toast for that day. Wow, I did manage to contain my excitement … and also my ‘here we go again’ face when someone in the cafe came to ask me how long did my batteries last.  I wondered how long his legs lasted on one charge but refrained from the intrusion of asking.

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Anyway, first up James headed towards the engine shed. The main signpost goes to the stepped entrance. Eventually I walked back to the field we had just come from to the (not signposted) level back entrance. By the time I went in James was ready to come out!

They had a beam engine, traction engines and a model railway display, play table with trains and some automobiles.

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Next up we went on the train – just down the line and back again. I could get on via a ramp to the middle of the carriage but not inside the totally covered bit.

The bluebells in the woods were nice, and if it had been a nice day, there was plenty of picnic benches in the wood.

By the end of the day, the weather was really closing in and I sheltered whilst James had his last train ride.

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All the facilities were pretty good – clean and they had an accessible toilet (although it’s not mentioned on their website – Kevin phoned to ask as they don’t mention access at all).

So that was Easter Sunday 2014.

 

 

Marle Place

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Just over 30 minutes from us is Marle Place. We spent a Sunday afternoon wandering around the gardens, woods and orchards. It costs £6.50 for adults and wheelchair users get in free. However, we were charged for my entry. It’s a strange policy as it’s pretty accessible on powered wheels and specifying only wheelchair users gain free entry as opposed to disabled people in general is somewhat strange. Neither did their website mention access on their visitor info web page.

Anyway, hidden in the web text was a mention of access and a ‘wheelchair friendly lavatory’. Personally I’ve never met a rude loo but there we go.

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We meandered across lawns and I bumped over tree roots through woods. They have an art gallery and a range of sculptures in the grounds. It was a shame there was no information about the works.

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My favourite part was the chickens. They posed for me to try out my zoom lens and very good subjects they made too!

We ended our walk with a cup of tea and cake in the tea shop.

Afternoon at the Hornby Museum / Visitor Centre

Steam Train

Our first visit to the Hornby Visitor Centre in Kent was a pleasurable afternoon. Our group, once again, consisting of my mum-in-law, husband, nephew, teddy and myself. Fortunately, this time, teddy wanted full participation in what the museum had to offer and shared the full experience with my nephew James.

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First stop (after an initial fail to find the car park) was to peel James away from watching a model train layout in the Hornby shop (*you have to be careful how you type that) and tempt him into the restaurant with the promise of a ham sandwich.

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Their meal selection was quite nice, Kevin and myself had  a ‘blow your head off’ chicken curry which was perhaps just the ticket (ha ha) for a cold rainy day.

So, all fuelled up, we headed at full steam into the museum. We weren’t sure what to expect because their website didn’t say a lot.

We spent the whole afternoon there, following James around as he did laps of the exhibits. As expected, a short narrative of the man himself how he started of as a toy maker and moved into inventing Mechano, then the famous scaled ‘toys’ and models of planes, trains and automobiles.  A small, un inspiring Thomas The Tank Engine layout was the first exhibit which was made slightly more exciting by having domes in the middle that children could pop their heads into, in the middle of the layout.

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 There is a small video room, a model train layout (again not the best, but not the worst neither), a few rooms with cases of various models for display and how the scaled models are produced for AirFix.

At one point teddy was given a leg up to peer into the model railway and nearly caused an epic derailment and the felling of several fluffy trees.

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There was also a weird display of cars on podiums (Pocher Models) that were about 5 foot off of the ground… small people need not bother with this room. The museums is modern, airy and had a ‘science museum’ feel to it with low level lighting and lots of blue and white spotlights.

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However, most of the time was spent playing with the Scalextric circuits at small person’s height! He thought this was great fun even though he generally lasted 5 seconds on the track before shooting off. We stayed most of the day in this area! Kevin seemed to enjoy it too – boys and their toys!

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Apart from the one room with the high plinths, access is fine and you will find the pleasure of not one but two roomy accessible toilets hiding in the gift shop area (one without a baby changing mat you will be please to know!).

I think James gave the museum a thumbs up and we all had an enjoyable afternoon.

Disabled people need better toilet facilities

Did you know there are 221 public toilets (provided by councils) in Kent (plus thousands of other places to use the toilet outside your home like businesses, cafes, shops, pubs,  tourist venues, service stations, ports, railways, airports, leisure complexes, retail outlets, supermarkets, parks and gardens, libraries….. bushes if you’re desperate…  you get the idea).

Here are all the council public toilets (in roughly mapped out council areas).

Public toilets in Kent

Now, for people with profound learning disabilities, brain injury, spinal injury, multiple sclerosis, muscular dystrophy, motor neurone disease… the picture is quite different.

If, you can not stand to take your weight or push up with your hands to transfer from, say, your wheelchair to the toilet,  the only way to get onto the toilet is using a hoist (or perhaps laying down on a changing bench to change pads/clothing).

If you go out with a carer or assistant, they may not be allowed to help you onto the toilet and insist on using a hoist.

People who need a hoist or changing bench (or plenty of room) look for what are called Changing Places (CP) toilets/hygiene rooms.

These are the TOTAL number of such toilets in Kent  – 24 (of which some are in day centres). Only 4 out of the 12 councils that cover Kent provide information about them on the ‘public toilet’ section of their web-sites.

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[Blue squares and red dots indicate 1 Changing Places toilet for public use]

Only one is located near a cinema, there are none located in hospitals, service stations, ports/railways/airports (there is one at Eurotunnel). The large central library in Kent does not have one and a new 2 million pound bowling centre in Maidstone doesn’t have one either (the cost of such a toilet being rather a drop in the ocean of a 2 million pound building).

Kent is a major gateway into the UK from Europe. The big tourist attractions like Leeds Castle and Chatham Dockyard have no such facility, neither does Canterbury town centre with its historic cathedral.

I worked in two Universities in Kent and neither had these facilities for disabled staff or students.

So what do people do?

Well, we either don’t go out or our assistants/family lift us onto the toilet floor to change pads etc or lift us onto the toilet. When I go out with my PAs – to the cinema, I have to limit what I drink and eat to be able to last until I get home.  It’s not safe, dignified or hygienic to live like this.

People who need these facilities can also do something else – raise awareness of what is needed, why they are so essential, provide information to venues and thank those who have considered the hygiene needs of thousands of people and their families.

More information about CP toilets in Kent

More information about CP toilets, where they are and how to install them.

Wingham Wildlife Park, Kent

Red Panda

You have to admit it,  Jasper the red panda is very cute. We saw him on our day out at Wingham Wildlife Park on Saturday. We took my nephew (who’s 3 and a half) and my mum-in-law, and arrived for lunch after about an hours drive.

The park was taken over in 2008 so it was a mixture of new animal enclosures and the old tatty run down parts which are on their list for redoing. In fact, they had started to build the new entrance/cafe/gift shop when we went in – and it’s badly needed. They currently have a small cafe with a reasonable selection of food  (sandwiches, burgers, jacket potatoes and all day breakfasts for example). However, their cafe furniture in a small, none ventilated room was pretty unpleasant if you don’t like the heat. Outside are modern, metal bistro type tables – but it was rather breezy and I didn’t fancy my hair becoming part of my chilli and cheese jacket potato. I suppose you have to watch the pennies when you are doing up a park – but charging for sauce condiments and not having serviettes was a bit much. That said, I enjoyed my lunch and my nephew was now fuelled on cheese sandwiches.

Wingham WIldlife Park -Louise - 01Teddy came with us and travelled on my knee until such a time where he didn’t seem to mind being hung on the back of my chair in a plastic bag. Teddy had been immediately abandoned for a blue snake from the gift shop which was now exploring the park with my nephew. Life can be hard for a bear.

Getting around

Although a little bumpy (lots of uneven terrain), and with Teddy hanging on for his life, we covered the whole park and still had quite some time in the play area. I always like the walk through enclosures with the hope of standing next to the animals. In this park you can do this with the flamingos and lemurs.  I managed to stand within 3 few feet of a flamingo – just before an idiot tried to stand right on their bank thus scattering them into the water. I guess some people really don’t know how to behave around animals.

Seeing the animals

The park had lots of small animals, a few large cats and a handful of penguins (in a new and modern environment) . My nephew flitted from one to the other with his 20 second attention span. The wolves and reptiles won over a few more seconds and we saw the crocodiles being fed.  He managed to turn into an attraction himself at one point when he ran towards the meerkats and his trousers fell down.

Penguins

For a new enclosure, it was a shame that the wooden walkway around the pool didn’t have enough space to pass people, well not in a wheelchair. I only just managed to squeeze past the prams in my small chair – otherwise it was single file. If they had just allowed another 6 inches this could have been avoided.

Sometimes the viewing experience from a low height is not the best – and reptile houses are usually the worst. Here is an example at Wingham. It also give you the perspective of what the park experience might be for a small child.

This is what standing people see:

croc

This is what I see:

Wheelchair user view of crocodile

Still, the sun shone and we had quite a good day all in all.