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.

Advertisements

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.

imgp0028.jpg

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.

wp-image--737606429

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

It could be you

We’ve all been there, right? It’s the middle of ‘circle time’ at that posh playgroup, or ‘relaxation’ during baby yoga. The other little darlings are sitting still, smiling, cooing gently, in their pretty pinafores while the mums sip their coffee and decline another chocolate digestive. Suddenly there’s an eruption. You can tell by the squelchy sound that this isn’t a false alarm. You can tell by the aroma that he’s started weaning. You can tell by the warm puddle on your jumper that it was your offspring responsible…

So you pick him up, not sure whether to hold him at arms’ length to protect the rest of your outfit (although it’s already covered in that orange dye they seem to put in all children’s snacks), or cuddle him in close to prevent him dripping on the carpet. Either way, he has his back to the rest of the mummies, who wrinkle up their noses and hold their darling daughters a little tighter as they see the tell-tale yellow stain creeping up the back of his vest.

Grabbing your changing bag you rush him into the bathroom and plonk him on the changing table, holding him with one hand to stop him wriggling off while with the other hand you rifle through the changing bag and silently pray that you remembered to repack some spare clothes after the last incident.

Half a packet of wipes later and he is looking angelic in a fresh nappy and clean clothes. You roll up your sleeve to hide the remains of the stains and try to tweak your hair into a slightly less dishevelled mess before re-joining the throng, who have by now completely forgotten the incident and are cheerfully comparing Bugaboos on their way out.

Not every nappy explosion has such a happy ending.

Now imagine you weren’t at a baby group but another everyday activity – out shopping, maybe, at the railway station, or in the pub. Imagine your son wasn’t six months but six years, or sixteen, or sixty. Imagine he’s in a wheelchair.

You can’t lift him onto a baby changing table, in fact the changing table is too small and won’t take his weight anyway. If you’re going to get him laying down, you need a hoist to lift him and a full-sized bench to lay him on. That’s if you can get his wheelchair into the bathroom at all, along with yourself and his feeding pump, suction equipment or oxygen tank, let alone your shopping! What do you do? What do the quarter of a million people in the UK, who cannot use a normal toilet or a standard disabled toilet, do?

Sadly, in 2016, most of these people, in most parts of the UK, have three options: they can remain sitting in their own waste; they can give up and go home; or, if they have a carer with them who is able to lift them out of their wheelchair and onto the floor, they can be changed on the toilet floor. That’s right, the toilet floor. Where people stand. Where people pee. Where people throw rubbish. Where germs accumulate in cracks and crevices. Where pools of stagnant water or worse lie. Where uncoordinated arms and heads can bash against concrete, metal and porcelain in a room that’s too small to lie in. Some families carry a waterproof picnic blanket with them, to keep their loved ones clean(ish) while they are changed – and to carry reminders of the toilet floor with them on its underside when they leave…

What happened to health and safety?

If travelling by car, some families change their disabled members on the back seat or in the boot, in the open air for all to see.

What happened to dignity?

Some disabled people – especially those too heavy for others to lift, i.e. most adults – simply can’t go out, at least not for longer than they can guarantee not to need the toilet. Imagine if you couldn’t go out for more than two, three hours at a time, ever, just in case you needed to pee. Imagine if you couldn’t take your child out just in case they needed to pee.

What happened to inclusion and access for all?

You may not always need to imagine. You may (God forbid) be in an accident. You may get sick. You may just get old. It could be you. Soon, it will be us. My son Benjamin is a charming, happy little boy. He loves to feel the wind on his face, see the sun shine through the leaves of the trees in the park, to watch movies and, particularly, to flirt with any brunette that walks past. He also has quadriplegic cerebral palsy, is doubly incontinent and, aged nearly three, weighs 14 kilos. That’s already too heavy for many baby changing tables – unsurprisingly, because he’s no longer a baby. Yet that which is almost universally provided for babies these days – a safe, hygienic and dignified place to change – is rarely provided for children and adults. Suddenly, just because he is older and bigger (both things we are immensely proud of), his safety and dignity are taken away. Our immunocompromised little boy will have to be laid on a dirty toilet floor, or spend the day sitting in his own excrement, or be confined to the house.

You don’t have to be incontinent to face this, you simply have to be unable to transfer from a chair to a toilet without help or a hoist. Or even to use a wheelchair too large to fit into many disabled toilets. Our heroic paralympians, our war veterans, our elderly relatives. It could be you.

It doesn’t have to be like this. What if someone designed a toilet with a height-adjustable bench large enough for an adult to lie on in safety, a hoist to transfer them to it, and enough space to get a wheelchair and a carer (if necessary) alongside? What if? It might surprise you to know that someone already has. It’s called a Changing Place. Why have you never heard of it? Because there are only about 900 in the UK. That’s one for every 2500 square kilometres.

Disabled toilets are not enough. Changing Places are so important to the battle for inclusion and equality. In our nearest city, Edinburgh, there is no Changing Place at the airport, in the railway station, in any of the museums or galleries, or anywhere on the main shopping street. Not in John Lewis, nor Marks and Spencers, not in Harvey Nichols nor the famous Jenners.

The Equality Act 2010 requires organisations to make ‘reasonable adjustments’ towards accessibility and that just isn’t happening. We don’t need a Changing Place in every corner shop. But we do need one in every hospital, airport, department store, motorway service station, and town. It might not matter to you now, but one day it will matter to you or one of your loved ones. One day, it could be you.

dsc_2019.jpgThis Halloween, join the #phantomloos campaign. Sign the petition. Ask the large organisations you use whether they have a Changing Places toilet and if not, why not. Find your nearest Changing Place at http://www.changing-places.org/find_a_toilet.aspx

#benchandhoist #changingplaces #spacetochange #phantomloos

Read other #accessibilitystories at http://www.theinclusivehome.co.uk/accessibility-stories-oct-16/