It ain’t easy being green

So, this week I got into an argument with some people I don’t know on Facebook (I know, I know, I should know better). The argument was about this picture, originally seen in a viral tweet:

Screenshot of a tweet showning an image of peeled oranges inside plastic cartons

A friend shared the photo with the single strapline ‘wtf’ and there followed several comments along the lines of ‘carry a pocket knife … no excuse for this.’

So I made the mistake of pointing out that some people, actually, do have an excuse, nay, a reason, to need such items, for instance poor coordination or muscular weakness, and that perhaps we could be open-minded enough to consider the difference such pre-prepared foods make to the potential for living an independent life as a person with a disability (as had already been adeptly pointed out on several news outlets such as The Metro). Sadly, few other commenters were interested in being open-minded, they only wanted to show off their green credentials by ramming the point about plastics home.

Similar arguments have been raging recently over the phasing out of disposable plastic straws, for which neither paper, stainless steel, or reusable plastic as yet provide a perfect alternative for those who cannot easily drink from a cup, can, or bottle. Now I do agree – who couldn’t, having seen the evidence on Blue Planet 2? – that, for reasons ranging from climate change to marine conservation to the depletion of resources, we need to reduce massively our reliance on plastic. In fact, living less than a mile from one of Scotland’s most beautiful (albeit inaccessible to wheelchairs) beaches, I am acutely aware of the despoiling nature of drinking straws, cotton buds, discarded flip-flops, etc., etc.

A beach covered in plastic trash

But. For some members of society there’s not ‘no excuse’ for using plastic drinking straws. They can’t just ‘carry a pocket knife’ and peel their own oranges. And vilifying these people doesn’t help build a compassionate society that shows concern both for our neighbours and for the environment we all share.

I try to be green. I walk or cycle where possible. I compost waste and use cloth nappies. We have insulated our house and don’t heat the rooms we don’t use. It’s in our own best interests: I know that working towards a more sustainable way of life is of most benefit to the most vulnerable, with eco-catastrophes such as more frequent and severe winter storms, rising fuel and food prices, and the loss of cultivable and habitable land, impacting hardest on disadvantaged groups including those with disabilities.

A pile of enteral syringes, of varying sizes

But, I also know that, because of Benjamin, our life is less sustainable than I would like. We have the (gas-fired) central heating on at night to keep him warm. We use – and discard – plastic containers, tubes, and packages every day as part of the process of feeding him safely. We have to drive places because public transport is not always feasible. Should we be mocked on social media for this? Should we be criticised for consuming materials that, literally, keep our son alive? Should being green trump caring for our most vulnerable?

Perhaps what is needed is legislation, not to outlaw single-use plastics entirely, but to limit them to those that cannot do without them. Of course, this will eventually make them effectively unavailable even to those that do need them, because a specialist label almost always means a specialist price-tag: the more ‘niche’ a product becomes, the more prohibitive its cost. Perhaps instead plastic goods should be available only on prescription, like antibiotics, to prevent irresponsible users putting everyone at risk. But with some clinical commissioning groups already considering cutting funding for non-pharmaceutical items such as prescription formula, I’m not sure this would be popular either.

There’s no easy answer. Clearly we should seek to develop safe, effective, reasonably-priced, sustainable alternatives to single-use plastics. But we aren’t there yet, and in the meantime I’m not sure banning them and stigmatising their users is the way forward. People with disabilities are discriminated against and misunderstood already; this will just provide the bullies and perpetrators of hate-crime with another weapon in their armoury.

So how can we reduce our plastic use without an outright ban that negatively impacts upon the small sector of society that truly can’t live without them? The first step has to be education: let’s keep up the impetus that Blue Planet 2 has started. At the same time, we need to support the development of safe, effective, affordable, desirable, and sustainable alternatives. In the meantime, it’s up to us all to be responsible: if you don’t depend upon plastics, don’t use them: leave them for those that do (I only hope people’s attitude to plastics differs from their attitude to disabled parking bays…!). With tolerance, thoughtfulness, and responsibility we could build a society that values its environment and its most vulnerable members. Is that too much to ask?

Benjamin, a smiling four-year old boy wearing glasses

These specs aren’t single-use plastic are they mum?

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The long haul

The world is closing in around us. Around my son, his siblings, and me.

My children are all growing up so fast. I can hardly believe Benjamin is four – he’ll be starting school next year. My eldest is already a grown-up P1 girl and loving it. And my littlest is walking, running, and jumping with boundless energy. As a mother, I’m moving out of the cloistered new-born weeks for the final time. The world should be opening up with opportunities for all of us.

A three-year old boy, smiling, in a special needs buggy, wearing glasses, a woolly jumper and smart new blue boots with velcro straps

Pleased with his new shoes

Benjamin is doing spectacularly well. I won’t bore you any more with the medical interventions we’ve employed which have got us to this point. We’re just so chuffed to see him putting on weight, and length, and developing a personality (even if that is characterised by pretending to be asleep to get out of things he doesn’t want to do). I’ve had to ask for a new chair, a new stander, a new wheelchair, and new shoes – and I’m immensely grateful to have been supplied with these without question. He needs bigger nappies and that means a trip to Primark (no expense spared!) for bigger trousers. We are even starting to think about having to hoist him to protect our backs.

We’ve moved on from ‘He won’t survive his birth,’ and ‘He’ll likely not see his second birthday,’ through ‘He’ll be in and out of hospital until he’s five,’ to the gobsmacking (in a good way) pronouncement of our consultant last week: ‘He may well remain stable until he hits puberty.’ This is amazing! Every extra day with Benjamin is a bonus – so the prospect (fingers crossed, touch wood) of years more smiles and cuddles is just a dream come true. And this new-found, hard-earned, and still-surprising health should pave the way for him to get out and about in the world.

But. The world is closing in around us. Because the world isn’t built for us. Let me go back to the hoists. This might sound like a small change – but actually it’s a massive leap. The transition from lifting to hoisting is a tipping point. It marks the end of being able to take Benjamin anywhere, in a backpack, baby carrier, or buggy, to being limited to places that are wheelchair accessible and – if we stay for more than a few hours – have a bathroom with a bench and hoist. My mother-in-law has kindly invited us to holiday with them next summer – but by next summer I don’t even know what kind of accommodation we would be able to stay in. Certainly it won’t be long before we’ll have to pay over-the-odds for a wheelchair-adapted room or cottage.

Now toilets really aren’t the focus of this post, but they are a good marker of how inclusive and accessible our country really is: and there are only just over 1000 fully accessible Changing Places toilets that Benjamin can use in the UK (that’s roughly one every 90 square miles. That’s fewer than half the number of toilets in Wembley Stadium, as Our Inclusive Home so tellingly pointed out). Finally, thanks to the efforts of an incredibly dedicated band of campaigners, Changing Places did hit the mainstream news in recent weeks, and have been discussed everywhere from Facebook to the Houses of Parliament. But is this going to lead to change? Ikea and Wetherspoons are leading the way. Center Parcs are following suit. Yet most of the major supermarkets, cinemas, and department stores couldn’t give a ****, or so it seems.

A three-year-old boy in a special needs buggy, squinting into the sun, in front of a grassy lawn and a ruined castle wall, beyond which is a blue sea and sky

Getting out and about

So, the world is closing in around us, because if we want to go out with Benjamin we are very soon going to be limited to those 1000-odd places, including Ikea and Wetherspoons of course, so at least we can get a beer and some ödmjuk… Soon, our children’s grandparents are going to have to come to us if they want to see us, because we won’t be able to get Benjamin into their houses. I can’t imagine we’ll be able to camp for much longer. The number of friends we’ll be able to visit will become vanishingly small. I won’t be able to take Benjamin to try on those trousers in Primark, or to the cinema, on a long train journey, or to the zoo.

I’m readjusting my already readjusted life plan. In good ways – thinking about where Benjamin will go to secondary school – and in ways I’m not so sure about, like installing a modern wet-room in our characterful Victorian house, like wondering whether I’ll ever, realistically, go back to travelling the world for work. And I’m readjusting for my daughters too. I need to get them used to the long-term idea of having a disabled brother. Undoubtedly they will miss out on childhood activities – holidays abroad, camping trips, family hikes, even family days out on our local beach. Will Benjamin become a millstone around their necks when I am gone?

I have so many questions now. How will society treat Benjamin when he’s no longer a cute little boy, when he’s a hairy, hormonal teenager, or a grumpy old man? What on earth will he do all day when he leaves formal education? How much of an environmental impact do decades of disposable nappies have and is it worth fighting for an alternative? Will he get PIP when he turns 16? And, what if I die before him?

I don’t have the answers. I do know that these are not really questions about Benjamin but questions about society. Any problems we might face over the coming years are not because of Benjamin and his disabilities, but because we live in a world that values profit and popularity over people, that pays lip-service to equality but neglects to make reasonable adjustments towards inclusion, that celebrates diversity but assumes the only purpose of prenatal testing is to facilitate the eradication of ‘diseases’ such as Downs Syndrome.

To those who would say, ‘We warned you. You asked for this. You knew at 38 weeks what was coming. You had the chance to avoid all this so don’t come running to us complaining about the impact on your daughters and asking for a bench and hoist….’ No. NO. The value of my son’s life has nothing to do with the impact he has on anyone else’s. Nothing, nada, zilch. However many days, weeks, years we are blessed with, his life is 100% worthwhile. He has a right to life and a right to live life to the full, and it’s up to us – all of us – to make it work.

A four-year old boy, beaming, wearing a silly hat and surrounded by balloons that say '4'

Here’s to the next four years and beyond

Portrait of a three-year-old boy squashed into a brown corduroy coat and woolly bobble hat, looking grumpy

But do I have to go out when it’s snowing, mum?

So if I’m going to have to write a few more letters (Fort Kinnaird, Edinburgh Zoo, Dobbies, you’ll be hearing from me again), if I’m going to have to host a few more Christmas dinners rather than travelling to others’, if my daughters are going to learn first-hand the value of neuro-diversity instead of biodiversity, sobeit. We are, a thousand times over, the fortunate ones. We have three beautiful children, and the longer we get to spend in their presence the more blessed we are. I will cherish every minute, be grateful for every day, and fight for everything that is right. We’re in it for the long haul.

When you love church but your child hates it

The Christian Church is far from perfect.

I, and my family, are so lucky to have found in St Anne’s a small branch that is growing, thriving, outward-focused, community-centred, accepting, caring and inclusive. We are fortunate that Benjamin, although ‘complex,’ is not ‘challenging.’ Yet I am confident that, even if he were noisy, disruptive, violent, or anxious, our church community would do everything in their power to welcome us; that they would see this as a shared problem to solve, not a personal problem to ignore.

This isn’t always the case. It’s not easy being a SEND parent, and the Church can be a great support – but it can also be a challenge or even a hindrance. I’ve been asked this week to share an anonymous post written by a fellow SEND parent and a fellow Christian (if I am honest, a more committed Christian than I, who lives and breathes the Spirit in her life and in her writing). I am both saddened and excited to share this post.

Saddened that not everyone is treated they way we have been – with gentleness and compassion.

Excited that through sharing these words I may be able to help encourage and promote change in the church and elsewhere. Every group – perhaps especially every church – can always do more to avoid becoming complacent, cliquey, and to foster inclusion for all members, especially those who no longer show their face or raise their voice.

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“My faith means everything to me. Church has always been a huge part of my life but now I wonder if I should continue going.

I went faithfully every week before I had children. When my daughter was born I continued to take her from the first Sunday she was born. She remained with me in the service until she was toddling and then she attended the crèche where I took turns helping out.

Everything was going well until it came time for her to leave crèche and start going to Sunday school instead. I went with her for the first few weeks but she really wasn’t enjoying it and I reasoned with myself she was perhaps still too young or just struggling with the change.

I spoke to the person who was running the crèche and they agreed my daughter could stay in crèche a few months longer. We tried again but she still hated Sunday school so I would bring toys with me and keep her in the service with me. In the beginning it wasn’t too bad. She would look at books, play with her happyland figures or sit on my knee for a cuddle.

Then she started getting bored and disturbing the service so I would stay in for the worship and slip out to the foyer with her and her brother for the rest of the service. If I am deeply honest I hated it. I hated the fact I was no longer included or could listen to the sermon. I was upset my children did not like Sunday school and that all of a sudden I seemed invisible.

I have had church in the foyer for six years now. My daughter is now 9 and still hates Sunday school. But something has changed: not only does she hate Sunday school she now hates church completely.

At 5 she was diagnosed with autism. I used to be able to stay in the service for the worship but now that stresses my daughter so much she screams. The music is so loud, the church is so busy and the lights are so bright. I rarely manage through the first song before I find myself back out in the foyer with my children because my daughter is crying and screaming.

I loved church for years but now my daughter hates it and I am heartbroken.

My eyes have been open to things I never noticed before. It seems churches want children who will take part in nativity plays, sing choruses with actions at Easter and fully engage in summer holiday clubs. They want children who can fit in with the programme, who require no additional support and who respect the volunteers. They want the children who run enthusiastically into the hall when it is time to go and bring out lovely crafts to show their parents when the sermon is finished.

What about the children having church in the foyer like mine? Children who find church difficult, who find social situations a huge challenge, who get overwhelmed by noise and crowds and change.

The very mention of going to church now makes my daughter anxious. She recently told me she doesn’t feel welcome there at all.

That broke my heart.

No amount of toys or technology or books can convince my daughter to come to church with me any more. Bribery has lost its appeal now and I fear I am damaging her spirit by forcing her to come against her will.

Yet my faith means everything to me still and I want to be in church.

I am broken hearted that church is not the place of love and acceptance to my child with autism that it should be.

Until that changes I have to put her first. So from now on I won’t be at the place I love on a Sunday anymore.

My daughter will be happy. I am heartbroken.”

Five things I’d change

This post was written for the #SEND30daychallenge, day 7: ‘Five things you’d change.’ We are so fortunate to live in Scotland, where there are really very few things that need to be changed so that Benjamin, and children like him, can live a safe, healthy, and happy life for as long as their biology and neurology allows them. Benjamin has many of the things that any child has a right to: shelter, food, water, sleep, love, healthcare, an education. He has these in abundance. But there are still things that Benjamin misses out on due to his special needs. Some of these are already changing; some of them need to change much faster. Here are the five things I would change for Benjamin at the moment:

Freedom from infection. Benjamin’s body – in particular his brain, stomach and lungs – is not as good at fighting infection as other children’s. If he gets a fever, it might cause a life-threatening seizure. If he gets a stomach bug, it can cause his entire digestive system to shut down and his pancreas and bowel to become inflamed. If he gets a cold, he frequently needs to be given oxygen to support his lungs. Any minor illness can put him in hospital for anything from one night to several weeks. Yet, still in this country parents flout the 48 hour rule that is designed to stop stomach bugs from spreading. Still, parents treat chickenpox as a minor illness. Still, people refuse to vaccinate their children, increasing the reservoir of infectious diseases to which Benjamin is subjected. If I could keep Benjamin in a bubble, I would. But that would not be beneficial to his growth and development, so I rely on other parents being responsible, thinking of others, putting childrens’ health above their convenience. The first thing I would change would be the culture that makes this so hard to do.

The ability to just pitch up and go on public transport. We have our car, which is great, but with a really fast rail link between us and our nearest city, it would be lovely to just be able, spontaneously, to hop on a train and go in to Edinburgh for a spot of shopping, to the movies, out to lunch, with Benjamin. Instead, we have to decide which trains we will be travelling there and back on – so no last minute decision to stay late – and book assistance and a ramp 24 hours in advance. So much for spontaneity! With trams and some buses wheelchair-accessible without assistance, it would be brilliant if our railways could move in that direction too.

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Even this little train was more accessible than the East Coast mainline

Privacy and dignity when going to the toilet. Benjamin is nearly four years old, and weighs twenty kilos. He is still in nappies, and will be for the rest of his life. He is fast getting towards the limit of what a standard baby changing table will take, if not in weight then definitely in length. We are also getting towards the limit of what our backs can safely lift out of a wheelchair and onto the floor of an ‘accessible’ toilet – if we really wanted our beautiful boy to be laid on a place where people stand to pee, a place often wet, a place with too little space to kneel beside him, a place where most people wouldn’t even put their handbag! Yet few (less than a thousand in the UK) large venues, such as shopping centres, transport hubs, and cinema complexes, have something as simple as a changing place (a toilet with a bench and hoist), so we will soon be unable to use them with Benjamin. Our alternatives are becoming limited to changing him on the floor, changing him in the boot of the car, or allowing him to sit in his own waste. If we want Benjamin to have privacy and dignity, he’ll have to stay at home. In the twenty-first century, that can’t be right, can it? If you’d also like to see this change, please sign the petition here.

The chance to play with other children during the holidays. Benjamin loves going to his special needs nursery during term-time. It’s a brilliant environment, the staff are amazing, and he has friends there. During the holidays, all that is denied to him because the one-to-one health provision that he needs in order to attend nursery isn’t available. He’s stuck at home with me, which is boring for him and guilt-inducing for me! Across the country, the lack of suitable holiday provision for children with complex needs, or profound and multiple learning difficulties (PMLD) is sadly consistent. Children lose their stimulation and impetus, their friends and fun, parents could lose their jobs. Equality shouldn’t stop during the holidays.

Access to the natural environment. Benjamin loves to watch the sunlight flickering through the leaves in a woodland. He loves to feel the sea breeze on his face. We are fortunate to live near several beautiful beaches – but sadly very few are accessible to Benjamin (although there are now a couple of brilliant beach wheelchair schemes at the larger resorts). There are steep steps, narrow bridges, soft sand, and overgrown paths. I know we can’t expect to be able to take him everywhere, but I would one day love to be able to take him to the beach.

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Maybe better wait until low tide though…

These are just a few of the things I would like to change – and that I think are changeable. The eagle-eyed amongst you will have noticed that I skipped the #SEND30DayChallenge Day 6: ‘A letter to the Prime Minister.’ I’m sorry, Ms May, but frankly, yesterday I was stumped. I had no confidence that you would be interested, no idea what would catch your interest, no concept of how to make you care. I feel we have more hope of achieving things at local level, through local politicians, lobbying nearby businesses, engaging local people and using social media. With my five things, I feel we have a real chance of change, from the grassroots up.

What would you add? #send30daychallenge

Gone camping (again)

By popular request (although the friends due to come camping with us later in the year may regret it), there follows a report of this year’s Family Summer Holiday: A Wet Weekend in Wooler. Not that I’ve got anything against Wooler. Well not much. Read on.

They say rain sounds much heavier from inside a tent than it actually is outside. I don’t know about that, but I do know that if you pitch your tent next to a river, it sounds like it’s raining all the time. Which it was. They also say* a bog feels much squelchier through a groundsheet than it actually is underneath. This is probably true. It is also certainly true that everything seems harder when you have had less than two hours’ sleep per night for the last week due to a poorly eighteen-month old who just wants to be held and fed all the time. And that everything is more worrying when you take a medically-fragile child away from the comfort-zone of home and hospital. So, from a balanced viewpoint, we probably had a great holiday.

The campsite owner thought he was doing us a favour by offering us a choice of sites. Of course, he doesn’t know that we are the most indecisive people on the planet and that, whichever site we chose would inevitably result in one of us feeling that it was the wrong choice, one of us feeling guilty for making such a bad choice, and both of us blaming the other one for those feelings, for the rest of the holiday.

Anyway, we eventually selected the ‘secluded, sheltered, quieter’ pitch on the basis that on the day we arrived the campsite was rather windy and overrun by Duke of Edinburgh Award students on their expedition. As the days passed this turned out to be the ‘just next to the road, just above the river, surrounded by poisonous plants with yummy-looking pink flowers, exceedingly muddy and rather midgy’ pitch. On the plus side, it did have a play park right opposite and was well frequented by cute fluffy rabbits and cute fluffy ducklings (and their rather aggressive parents. And all their shit). At least Caitlin got a lot of practise at ‘What does the duck say?’ ‘Quack.’ Without us even having to say ‘What does the duck say?’

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‘Quack’

So, we arrived at the campsite on a Wednesday evening with our car (leased on the Motability scheme solely on the criterion of having the biggest boot of all cars) packed from floor to ceiling – determined this time to be prepared for every eventuality. Of course this meant that the first eventuality was having to unpack the entire boot to get the tent out, leaving all our medical gear, sleeping bags, blankets, pillows, hot water bottles, emergency cake, cuddly toys, etc., out in the drizzle-that-became-persistent-rain while we spent the usual two hours putting the tent up, pegging out all the guys, attempting to tighten all the guys, realising that all the guys were threaded in such a way that they couldn’t be tightened, arguing, re-threading all the guys, swearing, arguing, and re-pegging and tightening all the guys.

This years’ spectacle was enlivened by the fact that Caitlin is now mobile and exceedingly speedy. We put Jackie on red alert, chasing Caitlin around the campsite and shouting a warning if she got to close to any road, river, poisonous plant or live animal, on hearing of which one of us would let go our portion of the tent and leg it at full pelt to intercept her, while the tent crashed to the ground behind us.

As we were slowly heating up our spaghetti bolognaise over a nearly empty gas canister on the first evening I remarked that it was getting a bit midgy. ‘Don’t be silly,’ said Ric, as my skin started to come up in large red weals, ‘You don’t get midges in England. Keep the tent flaps open, it’s a lovely evening.’ The next day, after I dosed Jackie up with Piriton to counteract the itching, we mentioned to a lady in a shop that we were camping. ‘Ooh, really?’ she said, ‘That’s brave. How are you coping with the midges?’ Turns out midges are less respectful of national borders than one (husband) might think… The next evening, we kept the tent flaps shut.

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I don’t care about midges – I’ve got cake

After tea we gave Benjy and Caitlin a quick wipe with a wetwipe (Jackie was deemed old enough to cope with the excitement of the campsite shower, and returned more covered with grass than she started) and had just about got everyone settled in their sleeping bags, if not terribly sleepy given that it was still completely light outside, when the unmistakeable tinkle of an ice cream van was heard. So while I commenced Benjy’s night-time routine of feed and medications, Ric and Jackie set off up the hill and returned with three enormous 99’s plus a complimentary, slightly smaller one for Caitlin. By the time everyone had eaten/spilled their ice creams and brushed their teeth again – and it was still completely light outside (and inside) – there was no chance of anyone going to sleep any time soon. So we all lay down in the bedroom together for stories and milk and an ongoing game of musical roll-mats until it finally got dark and we crashed out, one by one.

 

Wooler is a delightful little town on the edge of the Cheviots with a remarkably good Italian restaurant hidden behind an abandoned gym hidden behind a pub, an old fire station converted into a depot for fish-and-chip vans, and an amazing number of butchers. Even more delightfully, we were unaware until we arrived that we were there for the weekend of the Glendale Festival: a showcase of marching bands, fancy-dressed children, a lady on a pennyfarthing, and some plastic duck races on the river (sadly, Postman Pat failed to turn up). We were also unaware, but reliably – and entirely correctly – informed by the lady at the fish-and-chip van hub, that ‘T’always rains on festival weekend.’ In fact, even the pictures in the festival brochure showed a distinct predominance of umbrellas…

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Entirely appropriate camping attire (attitude optional)

On Thursday we decided to explore our surroundings, so we wandered up, then down, then up again into Wooler (which, unsurprisingly given its beautiful location on the edge of the Cheviots, turns out to be surprisingly hilly). I say wandered; between Ric and myself we took it in turns to carry Caitlin, push Benjy in his chair and push Jackie on her bike, except on the downhill bits where it was more of a case of chasing Jackie on her bike shouting ‘stop when you get to a ROAD!’

By the time we got into town it was lunchtime so we walked up and down the high street a couple of times, deliberating, before returning to the first café we came across, which was spacious and friendly and had a spaghetti bolognaise special on the board. So Jackie had her third helping of spaghetti bolognaise in two days and Caitlin threw jacket potato around the room. After this brief interlude of peace Benjamin started vomiting copious amounts of bile out of his nostrils, so I leapt up and suctioned him with our very noisy portable hoover while Ric attempted to contain the girls and we both ignored the questions from the children at the table next to us. Eventually the café-owner came up to me. Here we go, I thought, she’s going to ask us to take our caravan of children and medical emergencies elsewhere. ‘Is there anything I can get you?’ She asked. ‘Do you need any water? I know what it’s like, I had a little boy like yours.’ I could have hugged her.

After lunch we managed a bit of shopping: a waterproof jacket and large amounts of wine, chocolate, wetwipes and Calpol. We only had to make one phone call to the hospital (to check if a small amount of overgranulation around Benjamin’s new feeding tube required us to do anything – it didn’t) and only had to discard one outfit in a bin due to a nappy explosion and the fact that I couldn’t face storing that amount of poo for the next three days before we could get home and wash it… so I count the day as a success.

Friday was also a relative triumph, spent as it was on the Heatherslaw Light Railway, ‘England’s most northerly narrow gauge railway.’ Once we had got over the usual confusion and convinced the driver that Benjamin was a wheelchair-user and not just a child in a pushchair, we were allowed to use one of the very accessible wheelchair carriages for the twenty-minute trundle to the village of Etal. There we had lunch in a nice tearoom which had the foresight to provide ride-on toys in the garden so that Jackie and Caitlin could terrorise the other guests. Benjamin and I gate-crashed an AA meeting in the village hall in order to manage another nappy explosion on the floor of the disabled toilet, and then there was time for a quick climb on a cannon before the train back.

 

‘It’s okay,’ said Ric cheerfully later that evening, ‘The forecast has improved: there’s a whole hour tomorrow when it’s not going to rain.’

‘Really?’ I said, ‘That sounds promising.’

‘Yes,’ he replied, ‘It’s going to hail.’

So on Saturday – along with the rest of the population enjoying the first day of the English school holidays – we cut our losses and drove to Alnick, had lunch in Sainsbury’s and tired the girls out in the swimming pool. Returning to the tent, we spent a happy evening trying to avoid walking on the squelchiest bits of the floor, and watching the drips gather on the inside of the flysheet (I really do think they were just condensation resulting from containing five people and a heap of wet swimming towels on a day with 100% humidity. Ric remains less than convinced.).

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Drying off in the Italian. It’s even warm enough to remove my jumper, look.

The rain continued throughout the night (Oh, the joys of taking a five-year-old to the loo on a wet night. Oh, the repeated refrain of ‘Don’t touch the walls!’) and throughout the packing up the next morning. We were reduced to strapping the children into the car and putting on Mr Tumble’s ‘Party’ CD (on the plus side, we didn’t have to listen to it ourselves) while we took the tent down and attempted to get it back into the bag it came out of. ‘I remember this: you fold it in thirds, then roll it.’ ‘Maybe it’s quarters?’ ‘Let’s try and shake some more water off it’ (tent still contains more than its weight in water, and now we are both soaked too). ‘It must be folded in half and then thirds.’ ‘Does it matter if we don’t get it in the bag anyway?’

As I emptied and repacked the boot for the final time, to get Benjamin’s buggy in and also to find space for the authentic Spanish bowl we purchased at one of the festival stalls as a souvenir of our time in Wooler, Ric and the girls emerged from a temporary tea room run by the WI, bearing emergency cake supplies for the journey home. ‘I don’t want to go home Mummy,’ said Jackie, stomping her wellies. ‘Quack,’ said Caitlin. So we must have done something right, right?

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Overcome with excitement

The way I look at it, things can only get better. I mean, that’s got to be about as bad as camping gets, hasn’t it? Non-stop rain, midges, twenty-hours of daylight making it nigh-on impossible to get the kids to sleep. A toddler just old enough to run into the road, fall into the river and eat the enticing-looking foxgloves but not old enough to understand the word ‘no’. We spent four days packing up, two hours pitching the tent, approximately three and a half days actually being on holiday, two more hours taking down the tent, and another couple of days unpacking and cleaning the mud off everything, not to mention the laundry, and the fact that the tent is, more than a week later, still lying in our garden ‘drying’, with the lawn slowly turning yellow beneath it… Don’t tell Ric I said this, but I think it might feel more worthwhile if we actually went for a fortnight next time… Roll on October (and God help the friends who are coming with us).

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*they may not

[To read the previous installment in this series, click here]

We are the 57%

A few days ago, in a fit of frustration, I churned out a quick post about parking. Exciting, huh? But to my surprise it’s received over 11,000 views and generated a whole lot more Twitter traffic than I’ve ever had before.

So, what gives? Even posts I’ve sponsored on Facebook rarely get more than a few hundred views. Of all the posts I’ve written – on the difficulties of being undiagnosed, on the amazing work of children’s hospices, on the sanctity of human life, even on the importance of properly accessible toilets (which are certainly more scarce and arguably more important than parking bays), it’s the one on parking that’s sparked the most interest. I’m not bragging; I’m gutted.

So, what gives? Sure, in the UK we love our cars. We talk about the traffic almost as much as we talk about the weather. Victoria Coren Mitchell, presenter of Radio 4’s Women Talking About Cars, said the other day that for women, especially, cars represent a very special combination of both freedom and safety. For people with disabilities, cars probably mean even more in both those respects. Having only had one for six months, I love my Benjamin’s car, although I wish we didn’t have to use it so much. But I certainly don’t love parking – once I’ve got within a yard or two of the kerb I just want to shut the door and forget about it.

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If this was a disabled parking bay I guess I’d be tempted to park in it too…

So, what gives? Sure, in the UK we hate being told what to do – whether by a traffic warden, or Brussels, or a yellow line on the road and a blue badge in the window. But does that fully explain why I struck such a chord (or hit such a nerve, depending on your side of the debate) with a post about parking?

My theory is, it’s because parking is one of the few everyday battle lines between the disabled and the able. In fact, it’s one of the few situations in which disabled people are actually visible in our society. Yes, the able can complain about those of us ‘scrounging’ benefits. They can complain about us giving birth to children who will be nothing but a drain on society. They can complain about the effect inclusion has on the educational achievement of their mainstream children (hint: bugger all, apart from possibly making them less judgemental than their parents). But unless you actually know a person with a disability, you are unlikely to come up against these issues every day. Yet even if you don’t know a person with a disability, you probably park in a supermarket, school or public car park on a fairly regular basis.

And that’s the root of the problem really, isn’t it. Many people simply don’t know a person with a disability – or don’t realise they do. The Disabled Children’s Partnership, a coalition of charities campaigning to improve support for disabled children, young people and families, last week launched a new campaign called The Secret Life of Us. The aim of the campaign is to change the fact that an amazing 43% of the British public don’t know anyone who is disabled.

In parking, the 57% of us who have a disability, care for someone with a disability, or know someone with a disability, come directly up against the 43% who, through no fault of their own, don’t think they know anyone with a disability. The former know all too well the need for disabled bays, and cannot understand why anyone else would park in such spaces when they are so clearly needed. The latter cannot see the need for disabled bays, consider them an unearned privilege – particularly if we are not in a wheelchair, do not look disabled, or have children that are small enough to lift – and don’t see why they shouldn’t use them when it suits them.

So maybe this is where we should start. At the battle line. At one of the few places where the 57% become visible to the 43%. Disabled parking spaces are all about accessibility. Without accessibility it is very hard to have inclusion. Without inclusion it’s impossible to have integration. Without integration, it is extremely difficult to foster understanding. And without understanding, well why the hell shouldn’t I use that disabled parking space to save me a couple of minutes of my valuable time as a contributing member of society popping into the shop to get a pint of milk? It’s a vicious circle.

The Secret Life of Us campaign aims to break that circle, to help us – the 43% and the 57% – get to know one another. Now, the 43% can’t do anything about this – they don’t know we exist, remember. Their hands are tied. It’s up to us, the 57%, to start building awareness, to be brave and not shy away from sharing our stories and showing our lives in all their flaws and their beauty. Because everyone’s life – disabled or not – has flaws and it has beauty.

If you read my blog (thank you!) you’ll have a glimpse of that: stressful, sometimes traumatic, hard work, rewarding, ever-changing and featuring rather a lot of bodily fluids… But there’s a lot more I can do. Everyone in my community knows Benjamin, but not everyone in my community knows that I had anorexia in my twenties. I’m in awe of friends who are becoming more open about their mental health – in person and on social media. Social media certainly has a role to play here: the ease with which we can share The Secret Lives of Us – anonymously if we wish to – makes now an ideal time to bridge the gap between the 57% and the 43%.

I’m not saying we all need to go around shouting about our bowel movements and breakdowns and whether we’ve had breakfast all day long… but if the 57% can share a little more and the 43% can listen a little more, maybe we can all judge a little less. Because parking shouldn’t be a battle line. There shouldn’t be any everyday battle lines. ‘The disabled population is the world’s largest minority of which anyone can become a part at any time.’ We are the 57% – and one day you might be too.

If you would like to be involved in the Disabled Children’s Partnership, you can sign up at http://e-activist.com/ea-action/action?ea.client.id=78&ea.campaign.id=71897, follow it on Facebook and on Twitter. Share your stories, and read others, using the hashtag #SecretLifeofUs

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I’ll let you into a secret: sometimes our life is a bit dull #SecretLifeofUs

This is a disabled parking bay…

This is a disabled parking bay. There are four of them at my son’s school. They are close to the school entrance and they are wider than normal bays. Doesn’t it look inviting?

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This is my son Benjamin’s blue badge. I had to apply for it, and pay for it. Many disabled people have to fight for it. It entitles me to park in the disabled bays at my son’s school (and anywhere else) when I have him with me and he will be getting out of the vehicle, or when I will be picking him up and putting him into the vehicle.

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These are four of the cars that were parked in the disabled spaces at my son’s school today. None of them is displaying a blue badge.

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Maybe their drivers aren’t aware that although this isn’t a public road the school still enforces the blue badge scheme? Maybe they thought they had a good reason to park in the disabled bays – all four of them? Maybe they were short of time? Maybe they’re just lazy? Well, in case any of them are reading this…

Here are some of the reasons I need to park in these bays:

  • Benjamin comes with a lot of equipment: not just a wheelchair, but a feeding pump, suction pump, medications, syringes, nappies. More equipment than I can fit on his wheelchair, which means I have to push it with one hand. The further I have to push it with one hand, the less safe that journey is for him. If I have my other children with me, well, they just have to take their chances.
  • If I have to park in a normal parking space (if I can get one), it is too narrow to get Benjamin’s wheelchair alongside the car. This means I have to park it (and him in it) behind the car, in the path of other vehicles looking for their own parking spaces.
  • If I have to park in a normal parking space (if I can get one), it is too narrow to get Benjamin’s wheelchair alongside the car. This means I have to carry him (all 18 kilos of him) round to the back of the car. I don’t mind the damage to my back. What I do mind is the risk of pulling out his feeding tube, which won’t stretch from his seat to behind the car. If his feeding tube is pulled out, he has to undergo an operation under general anaesthetic to replace it. When Benjamin undergoes an operation under general anaesthetic, he usually comes back ventilated and in intensive care.
  • If I have to park on the road (which I usually do, because if the disabled bays are full you can bet it’s because all the non-disabled bays are full), all of the above apply, plus I have to carry Benjamin out into the path of oncoming traffic.
  • If I have to park on the road, the likelihood is someone else will park so close up to the back of my car that I won’t be able to open the boot, let alone get Benjamin’s wheelchair into it.
  • One of Benjamin’s problems is that he cannot control his own temperature. In the extra time it takes me to get him out of a warm car into his buggy and under a blanket if the buggy is at the back of the car and not beside the door, he can become hypothermic. In the extra time it takes me to push the buggy from the main road to the school, he can become hypothermic. An extra couple of minutes in the cold can mean several hours of struggling to get his temperature and heart rate stabilized at a normal level.
  • If Benjamin becomes suddenly ill, which he does, often, without warning, and dangerously, I need to be able to pick him up and get him into the car and off to hospital, pronto. I may not have time to wait for an ambulance. I may not have time to drive around looking for a parking space, walk round the corner from that parking space to the school, and push Benjamin back round that corner to the car. Minutes count.

Here are some of the reasons you may not need to park in these bays:

  • You are not disabled
  • You don’t have a blue badge
  • You don’t have a disabled child
  • You don’t have a pile of medical equipment to transport
  • You can walk 100 yards without getting hypothermic (no, that’s not an exaggeration)
  • You can self-transfer to your car seat
  • You don’t need to get a wheelchair into your boot (God forbid need enough space to use a ramp or hoist…)

Now, you may think ‘I’m only parking there for a minute.’ But if that minute is the minute when Benjamin and I arrive at school, you’ve put us in an unsafe situation for the whole day.

You may think this is a small, petty issue. But this issue puts my son, and many others like him (after all, this is a school with a special unit attached that caters for children with severe and complex needs from across the county) at risk.

Please, think again. Thank you.

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