A Nice Story about The National Trust and Disability.

For a while, back pain and poor mobility meant I almost become a recluse, venturing out when I had to. Then I decided that back pain and disability was not going to win; I am not going to stop living, I would just have to do things a bit differently. Some experiences have been shockingly negative. But some experiences while reclaiming my life as a person with chronic pain and disability have been uplifting.

I’m a member of the National Trust, have been for a while, ever since they put their Wembury Beach car-park fees up to £4.50; a single membership was cheaper than paying each time I kayaked and bodyboarded there. Then I had children and it was an invaluable way of getting out for fresh air in lovely locations. And now, my membership gets me out with family and friends when I might otherwise hide at home avoiding crowd and difficult situations.

There are some fabulous National Trust properties and gardens around the South West – Saltram House in Plymouth, Cotehele, just into Cornwall off the River Tamar, and my favourite Lanhydrock, further into Cornwall near St Austell.  National Trust have an inclusive attitude to disability – where possible, bearing in mind many of their properties are in old houses where lifts can’t be installed, or with rocky steps leading to hidden gardens that would be ruined with ramps put in. Although some places within their properties remain out of bounds, every location has as much access as they can put in without destroying the historic places themselves.

At Lanhydrock particularly, I hold the staff in high regard after one key visit. I couldn’t walk more than a few feet without stopping, had two children, two crutches and my mother-in-law with me. Immediately, the door to the little octagonal admissions hut was opened for me (possibly also for Mother-in-Law before she charged off; a spritely 80 something year old with a healthier back than me).  Carers go in free, so I have single adult family membership and R or a friend comes with me.  Without having to provide evidence of my disability, we were guided to the Golf Buggy that was to drive us the long walk to the house and gardens. This discretion was refreshing, having experienced other places where not much short of providing a full medical examination outlining the nature and extent of disability will allow a carer to freely accompany you watching your family go on rides that you can only look longingly at (Legoland – click on the link and view the section ‘Accepted Forms of Proof’ if you think I’m joking there).

The driver carefully helped me onto the Buggy and let Summer Girl sit in the front seat; took the bags from my mother-in-law, and told me to call from the restaurant when I was ready to come back. He would collect me before the main stop outside the grounds. Impressed so far? There’s more.

The house has a few floors, some of which are not accessible for disabled people (to be honest, I can’t say I missed much, I am not a huge history fan, love the gardens but it occupies the children for an hour). There’s a lift available (if you’re not afraid of small confined spaces) to some of the floors, hidden away and powered by what felt like small children and only available for disabled people. I was shown this with a smile, told how best to see the house with a disability, and a volunteer offered to help me up the stairs of the last section if I wanted to view it. I told you there was more, but keep going!

The children tried on top hats, searched the house for wooden mice so they could get a badge with a hedgehog on it, and pretended to cook in the vast kitchen. Halfway through, i crashed on the comfy sofas and rested while mother-in-law finished the rest of the house with the children, before heading back out for ice-cream and coffee and a hobble around the gardens. Plenty of benches to sit on and take in the beauty.

On the way back on the driver picked me up first as promised, dropped everyone else at the admissions hut and told me and another person to stay put. He then drove us a further 5-10 minute walk straight to our cars. I was so, so grateful, I hurt so much and literally couldn’t walk another step. I was dreading that walk and he must have read my mind. Amazing huh?!

I love that most of the National Trust staff seem genuinely family and disability friendly, not just because they have to be, but because they care about their work, their countryside and want everyone to share it. Ok, let’s not lie, there is always going to be the odd person having a bad day right? I can cope with that.

I’ve spent three days in the last two weeks at Saltram House; Winter Boy and Summer Girl playing croquet and badminton on the lawn with friends while I sat on a deck chair and drank coffee from a fancy tea-cup. Not a bad way to reclaim my life back.

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Books are for People, Not for Genders.

Winter Boy is just learning to read. He loves Thomas the Tank Engine. I thought he would have grown out of this almost 4 year long phase by now, but he loves is as much now as he did when he got his first Take and Play train. When it comes to books, he’s pretty clear about his interests. If it’s about Thomas the Tank Engine he will try to read it, stick it, colour it, press buttons on it. Although, i will give him his due, he is just starting to read actual words in books, and he eagerly reads whatever books he has from school, and he will attempt to read the words on anything that happens to be lying around.

Even bedtime is Thomas related if he has his own way. We try to break it up, for our sake as much as anything, as reading about a Really Useful Smug Engine can get quite annoying. Outside of the Land of Sodor, Winter Boy has no preference for ‘boy’ stories or ‘girl’ stories, whatever is easily reachable tends to suffice.

Summer Girl has gone through a (big) phase of insisting on ‘girl’ books. Glittery, princesses, fairies in tutus and pink sparkle everywhere; it has adorned her bookshelves since she has been able to read herself and be in charge of the book choosing. She has insisted on having the Rainbow Magic books, which are, in my opinion, dull, badly written and without imagination. However, in the spirit of wanting to encourage her to read, read, read, and not restrict or discourage her, I bought her a box set of 15 from the Book People, to place along with the classics on her bookshelf – Enid Blyton’s through to the complete Roald Dahl collection, and my absolute Favourite Book ever as a child – The Secret Garden by Frances Hodgson Burnett.

I am unashamedly delighted that she has tried and failed to get to the end of a single one of the Rainbow Magic books, which are deliberately targeted at ‘girls’; the covers are marketed for girls – pink and sparkle and fairies, the fairies in all books are girls, the main characters are girls and beyond the lure of maybe finding your own name it has very little substance. Not surprisingly, she has quickly become bored and has even forgotten which ones she’s started reading.

Summer Girl has on occasions been drawn into the ‘boy/girl’ advertising, struggling to have the courage and strength to choose what she would like. She is only 8 so I wouldn’t expect her to have those skills yet. Instead she has been guided by the glittery lights and pinkness of the bookshops, posters and book covers around her, and by what her friends are reading. She once stopped in her tracks when I suggested she bought a dinosaur sicker book, (having watched her delightfully help her brother do his) and hesitate, before reaching for the Fashion Dressing Up sticker book, again.

I have tried to not dictate to her what she can and can’t read, stick, colour, draw. But R and I have encouraged her to think about what she likes, have the confidence to look beyond the dazzle of pink and flowery, and to read all the things around her that might interest her. Conversations about it being ok to enjoy science, have ribbons in her hair, play with her dolls and playing football have included book reading and it’s starting to sink in.

Last month we all went to London. She dragged me, literally, into an antique bookshop and browsed the dusty old books, and marvelled at them with wonder, while Winter Boy sat himself on the floor, flicking through the solitary small ‘new book’ box tucked in a corner, reading (you guessed it) Thomas. Bella picked a book; 105 years and one day old, from the day it had been inscribed with a message to its first owner. The cover is dark green, with no pictures, with real typed pages. No sparkle, no pink. ‘please? can I have it?’ So i bought her Tom Brown’s School Days. It’s her prized possession, although she is waiting for the Secret Garden to be finished so we can read it together.

If she didn’t have the courage to ignore the mass advertising and inevitable impact on her peers, she would have been denied this experience of choosing a book that has inspired people for years. She wouldn’t be able to enjoy all books to escape on the many journeys they can take us; she would miss out on so much.

Luckily, she is learning that its ok to read what she wants. which, at the moment is everything she can get hold of. But this hasn’t happened with the help of bookshops and publishers, who continually thrust in her face that she, as a girl, shouldn’t be reading Star Wars magazines, but should be reading magazines about make-up and jewellery; she can do those things, but as well as, not instead of. Although if you asked her directly she would probably still chose the make-up magazines if I didn’t heavily encourage her to get something (anything) else.

I will continue to encourage her to push through the constant barriers set around her to define her femininity as one-dimensional. I will continue to encourage her to be anything, and everything she wants to be; to read anything and everything she wants to read.

I shall also encourage Winter Boy to do the same, But, I won’t be encouraging him to read the Rainbow Magic books; not because i don’t want him to read ‘girl’ books, but because they are shit.

Camping is Good for The Soul.

IMG_6563I’m not always moaning and complaining about back pain. Sometimes. I have fun. This summer I had fun camping. Lots actually. CAMPING?! yep, that’s right. It’s potentially the worst thing to do if you have a bad back. But, it’s absolutely the best thing to do if you live in the South West, if you have children, and if you have friends with children.

I love camping and I will never give it up. I have lost so much of the fun in my life over the last few years; can’t bodyboard, kayak (well I can, but it means so much more hassle than I can bear), run, dance (ok, I never could do that), just living and being the person I used to be, but I won’t stop doing this.

I don’t feel so disabled when I am camping, and this is why: Friends. And R. And the children. But mostly R and friends. When we go camping, we all muck in, everyone helps each other. Someone has normally forgotten something, another normally has a spare. We work things out, we lend a hand without being asked. We share beer, burgers, music and laughter.

R and I have a Golden Rule. We must, absolutely always have a bottle or two of Good Beer while we pitch our SoulPad Bell tent. My job nowadays is a supervisory role, directing where the doorway needs to go, barking orders about the distance of the pegs from the groundsheet, reminding R for the umpteenth time that the front guy ropes need to be placed first to get it hanging right, getting more beer.

We often get to our pitch first, closely followed by another of our party, one of whom grabs a beer, the other grabs a mallet, job done and we move on to the next tent.IMG_1804

This leaves me to do what I do best. I pretty it up. I have swathes, bunting, fairy lights, hippy throws, lanterns, tea lights, hanging hearts. At the last camp we had chinese style lanterns, a coffee table and rug, and a large plant at the entrance to our ‘front room’. Ok, so that was not a planned piece of decor, a friend, M, got it from the plant sale at the site we stayed in, but what a magnificent touch! That’s going to be a new feature for camping. Plants. It hurts to do the prettifying you know, bending, kneeling, twisting, but so worth it, to look at the finished effects with a beer in hand, then tweaking, and moving. There are no shoes in the tent. There is no bouncing, no swinging on the middle pole like pole dancers; not R, he’s never been good at pole dancing. There is also no food, no fizzy drinks, no pens. And, as you can probably guess when there are 8 children ranging from 3 to 11, that these rules absolutely get obeyed. Never. We used the puncture repair kit on our last trip, when typically, my side deflated.

IMG_7027While the tent is going up, the children are gone. To the nearest park, tree, flat ground for scooting/bike riding, popping back for snacks and drinks; And once the tents are in situ, the adults drink tea, or beer, cook food, play guitar, sing songs. We see the children occasionally for snacks, drinks, the odd minor scrape, but rarely until it’s time to eat.

I take lots of painkillers when I camp, I ramp them up. Because, while its fabulous, it does still hurt, but it’s manageable with opiates, naproxen and diazepam. And lots of preparation. and a good mattress.

I help however I am able, which tends to involve removing rubbish from around the place, sorting out recycling and keeping the place looking tidy. But, there is no pressure to be or do anything particular, I am not messing anyone’s fun if I sit down or go and lay down in the tent. I am not getting in the way, and I am not being ‘looked after’ if I need some help doing something. Except I am, I just appreciate the subtlety.

Trewan Hall Campsite in Cornwall is beautiful, and is disabled friendly. They kept a pitch free for me when we visited, near facilities, shops, on flat ground, and their site is largely wheelchair accessible for those who need this. I celebrated my birthday there this year and we returned for our last camp of the summer. It’s peaceful, with magnificent grounds, walks if you can manage them, a fabulous pool with a diving board, much to Summer Girl’s delight (a Lido with a removable dome for bad weather).  It’s close to Padstow for spectacular fish and chips, and some of the best beaches in Cornwall.

So, as you see. People with back pain can have fun camping, as long as you have the essential ingredients of friends, beer, music and good food. And did I mention a good mattress?

I Want To Dance.

I’ve recently been to the On Blackheath festival. The line-up for OnBlackheath looked good; Frank Turner and The Sleeping Souls, Imelda May, Athlete, The Levellers and more.  I grew up in SE London and have fond memories of Blackheath so it was exciting to ‘come home’.

This festival is not like other music events I have been to. A Middle Class festival with no camping,  food demonstrations galore and sponsored by Johnnie Lou. Full of middle class, middle aged people, but no-one wearing flowers in their hair or peacock feathers. Except us. R with his festival hat (and those peacock feathers); Summer Girl with that flower garland on her hair; winter boy with a black ribbon-adorned hat. We did see Champagne bars and exclusive areas with fabulous seating and palm trees and no queues for drinks; but only if you were a Johnny Lou member.

For those ticket holders who were not privileged enough to quaff cocktails while laying back on recliners, the floor with a picnic blanket had to suffice. Or standing. Or fighting with other peasants for space on the Rare as Rocking Horse Shit picnic benches, sandwiched between 3 distinctly different, yet equal in noise level, music stages.

I’ll repeat that, in case it passed you by.

Sitting on the floor. No camping chairs allowed. Did they think more damage could be done by drunk Londoners with Go Camping chairs than by a crutch belonging to a pissed off disabled woman? ‘Where did they think people with mobility issues are going sit?

Or standing. Which is mostly what I actually did. I lent on my crutch, walked a bit, sat on a child’s bench watching entertainers do street theatre, but mostly, I stood. Until, during Massive Attack, a large, heavy, drunk man crashed full speed into me. Pain seared down my legs, fear rose, and anger and upset that had been bubbling away all day, along with two tired children, had me hobbling back to the hotel less than halfway through the set.

Surely Disabled Access Platforms are now commonplace at music events? Well, there was one at On Blackheath. It was empty, carefully monitored by two security guards. In case the crutch wielding disabled woman tried to get in. Access denied. We had no wristbands. We were sent on a wild goose chase around the festival site, seeking that person with the Golden Access Wristbands and after missing some excellent bands playing to trying and failing to find someone in the know, I gave up and we stood.

Sunday was different. Frank Turner and The Sleeping Souls were playing. How could it be anything but fabulous? I decided to not stress about disabled access and enjoy my day, so helped by handfuls of opiates and my crutch, we braced ourselves for the crowds. Unlike my Beautiful Days Festival experience, which was amazing for disabled access , and the only time I have tried it since I fucked my back up, I felt like I should not have come to this music event. For, it was not really a festival. I felt unwelcome as a person with a disability.

Then an amazing thing happened. I got a Golden Wristband. We were in! I camped there for the rest of the day, mostly drinking overpriced red wine (medicinal), and R took the children off to have some fun in between some amazing bands playing.

As I watched the security guards continued to send clearly disabled people away from the mostly empty platform to get their very own Golden Tickets, I felt more anger and upset well up. Why was this platform so difficult for people to access? I looked around the festival to see more disabled people among the crowds and wondered if they knew this platform was available to them? Or maybe they already knew what I didn’t.

I spent the afternoon enjoying great bands while trying to not get cross at the noise pollution from other areas that constantly overshadowed the music. It was strange listening to Lindy Hop from a dance floor while Athlete played, and The Levellers were drowned out by dance music. Frank Turner was amazing. I expected no less. He played loudly and swore loudly, but yet still didn’t fully drown out the Big Blue Top in the background. But, bloody hell can that man sing, can that band play?! The children danced for me.

The platform was far from the main stage crowd, we were ostracised and segregated, far from the jumping, singing, amazing atmosphere of the excited crowd. We watched in the distance. We were there, yet not really part of it all.

I was cross and in my anger fired emails to various people. I was given platitudes and had smoke blown up my ass by the On Blackheath events organiser, until I refused to accept her disingenuous offerings and she became rude. I emailed Frank Turner, as he is an advocate of Disabled Access to Music. He replied and was very kind.  And I was reminded of the amazing support for disabled access to music out there that is promoted by Attitude is Everything. 

But, really, it was me that I was most angry with. It was harder than I expected. I’ve buried myself in my little cocoon and pretended things are no different before but they are. They really fucking are. I was cross with myself for thinking it would be the same as it once would have been.

All I wanted to do was Dance to my favourite music, to be in the crowd, not on a platform. I wanted to be dancing with the children on my shoulders, or swing them around to Beautiful Day sung by Imelda May and Four Simple Words by Frank himself. Instead I felt alienated, yet again a burden, a reminder that this fucking problem isn’t going away. It meant I couldn’t enjoy the weekend as I would have once done. I won’t be able to do that again.

I promise though, that for every upset, I will match it with a happy tale on the flip side of shit.

My Letter to Father Christmas

Dear Father Christmas.

I have not kept my room tidy and have not always taken my medicine when I should, and have not always done what I have been told – sometimes I have carried heavy things, including my children, and last week I went down some water slides – and sometimes I have been angry and not controlled my emotions well.

But, mostly I have Been Good. I have been a Loving Mother, even if I have not done my share of the School Run. I have been a Loving Wife, even if I have not always shown it as well as I should have. Ok, I have been an appalling employee but I have tried my hardest to get there.

In fact, I have tried hard this year to be as good as I can be at everything I do and I have tried really hard to find a way to manage my back problems.

So, I only have one thing I would like this Christmas, please, if you can find it in that massive warehouse of yours:

Can I please have some respite from this back pain that means I cannot walk, or play, or help with anything, for Christmas Day? Just that one day would be fabulous. Right until Boxing Day Morning.

Many Thanks

Wine.

Thankful Thursday – 4 More Sleeps To Go…

On Monday, we are going to Center Parcs Winter Wonderland for 5 days.

You will easily spot us. Our family will consist of 1 Mother with sparkly christmas hat, badly singing christmas songs and the top of her voice, swirling and twirling and clapping and whooping. You will see a 6-and-a-half-year-old girl with a matching hat, singing with me, dancing and twirling and touching everything she sees. You will see an Exactly-3-Year-Old, crying because mummy is insisting that he wears his very own sparkly christmas hat, and occasionally falling over as he desperately runs after us, trying to join in Mummy and Big Sister’s craziness. You will see a slightly subdued, embarrassed Father hanging slightly back, asking everyone to calm down and occasionally getting cross with the children for not doing as they are told and, likely also telling his wife off for the same thing.

We really need this break. We need to shake the negative out of this year and get ready for a positive 2013. We are going to sit by the open fire and wrap christmas presents and write out christmas cards, while drinking mulled wine as the children sleep. We are going to drink hot chocolate and eat mince pies, sing Christmas songs and watch christmas films. We are going to ride our bikes through the woodland, swim in the Tropical Paradise Pool and do a 12-Days-of-Christmas Trail. We are going to visit Father Christmas in his Woodland Workshop, have a Christmas Carvery, and maybe I might even fit in a massage or facial.

I am thankful that I booked this at the end of January 2012 to cheer me up after feeling so rotten last christmas due to serious back pain. I am thankful that I am well enough to make this holiday. Despite still struggling to shake a general feeling of unwellness (my blood hurts, how is that even possible?!) at the moment my back feels relatively stable, and although I am aware it can ‘go’ any time, I am enjoying how it is now, and just praying it will last for the holiday.

We might even have snow -how magical would that be?

 

News Just In: Jägerbomb Cures Back Pain

Last night I Went Out. I didn’t go to Sainsburys without the children, or to Toys R Us for last minute birthday treats, or to fill the car up with fuel, or to a friend’s house for tea to socialise our children with their children. Nope. I Went Out To a Pub. And THEN I Went To a Club. I Got Too Drunk. I Danced (ok, I sort of shuffled like, well like a 30 something pissed woman with a bad back). I Got Home Too Late. And Today I Am Hungover.

It has been so long since I have been out for a dance. Certainly not with a bad back that’s for sure. I knew it would be painful today, but actually, I cared very little. Jagerbomb anyone? I suspect there is always going to be a pay-off when I go out as today my back is a bit delicate, and my left leg is firing pins and needles like crazy and my numb patches have increased. But, it’s not like I am going to do this every week so I can cope with that sacrifice, because for a tiny little bit of time it felt like I didn’t have a bad back.