Ignorance is bliss?

On the day that our lives were turned upside-down by an emergency 38-week scan, I remember begging the neurologist to put us in touch with other families with children like our as-yet unborn child.

Some part of me knew – despite the medical predictions (“Your baby will never walk, or talk. He won’t be able to feed. He won’t survive the birth”) – that this wasn’t the whole story. I wanted a glimpse into the future. I needed to know, not just the worst case scenario, but the lived experience.

[Image by Peter H from Pixabay]

For whatever reason – perhaps because we were so very short of time to make our decision; perhaps because there were so few other families with children like ours in our area; perhaps because our wise consultant didn’t think it fair for us to invade their already complicated lives – for whatever reason, we never met with those other families. For whatever reason, we made the decision to go ahead with the pregnancy despite advice to the contrary. For whatever reason, Benjamin came into our lives.

Thanks to the amazing charity SWAN UK, I now do know several families with children similar to Benjamin. I know that their lives are just as complex and, at times, difficult, as ours. I also know that not one of them would have it any other way. Yes, we wish our children didn’t have to suffer. Yes, we wish society were more inclusive, accessible and equal. Yes, we wish our children’s siblings had a more ‘normal’ home life. But we never, for one moment, wish that they had not been born. Even the folks who, after that unpromising scan advised us to take the termination option, now acknowledge that all our lives are better with Benjamin in them.

The same is true of other disabilities and differences. You only have to watch this “carpool karaoke” video from last year to see how much joy, life, meaning, and promise children with Down Syndrome bring to their families – as much, if not more, than any neurotypical child.

And yet…

And yet at least nine out of ten women faced with a prognosis like ours would choose an abortion. Ninety-one percent of mothers in the UK who receive a pre-natal diagnosis of Down Syndrome terminate their pregnancy. According to the European Surveillance of Congenital Abnormalities, between 2006 and 2010 in England and Wales 157 foetuses were aborted for cleft lip and palate and 205 for club foot. More than 90 previously much-wanted pregnancies terminated each and every year for conditions arguably much less severe than Benjamin’s.

Why the disparity? Why, despite all the evidence that children with disabilities are better off alive than dead, are so many of them killed in the womb? Why do parents, after much heart-searching, honestly believe that this is the best thing to do, for their baby, for their family, and for themselves? Why do they, in alarming numbers, reach such an apparently contradictory conclusion?

One answer could be that they don’t have all the information on which to make such a decision. That, as we were, they are given the stark medical ‘risks’ but no inkling of the beautiful chances. They assume they have been fully informed, and they don’t ask for more. And who can blame them? Suddenly finding that the child you are carrying has a disability is, for most parents, completely outside their experience or previous encounters. It’s not something covered in NCT classes. So they trust the medical professionals by whom they are surrounded at that critical time. They don’t press the doctors for the other side to the story, because they have no concept that one exists. The medical story appears to be the whole story. This puts a huge amount of power and responsibility upon (already overstretched) medical professionals.

What if the responsibility wasn’t all theirs? What if they could do their job, of giving us the medical information, safe in the knowledge that everyone already has some idea of what it is like to be disabled, to bring up a disabled child, to have a disabled sibling? What if people weren’t afraid of disability because they see it in their everyday life: at school, at work, at church, on TV, in the supermarket, on the bus, …? What if we hadn’t had to beg our consultant to put us in touch with another family like ours because they were already all around us?

He ain’t heavy… he’s my brother

What if all disabled people went to mainstream schools, were supported to live in their own communities, could access their playgrounds, shops, restaurants, cinemas, zoos, theme parks, leisure centres, trains and planes? What if everywhere met the requirements of the Equality Act to make reasonable adjustments?

What if, instead of special schools, special “autism friendly hours,” and “purple Tuesday” shopping days (one day a year when disabled people are invited to go shopping… on a Tuesday, outwith the lucrative sales and Christmas shopping periods, of course!), disabled people could learn, shop, work, travel, and play with everyone else? What if people who need support to leave their house, get support to leave their house, rather than being docked financial support because they can’t leave their house to get to an assessment? What if people with “challenging” behaviour (i.e., unmet communication needs) were able to live with their families and peers instead of being locked away for years, in units hundreds of miles from home?

Then, we might all be better informed. We might all have the lived experience necessary to see the full picture. We might see that disability is not scary. Disability is not wrong. Disability is not a tragedy. Disability is not to be locked away. Disability is not to be culled from the population. Neither is disability an “inspiration.” Disability is simply an ordinary part of the rich tapestry of human life. Then, we might realise that ignorance is not bliss. Ignorance is missing out on the wealth of gifts, skills and talents that is hidden in the diversity of our population; which rarely see the light of day.

Benjamin loves to swim. He loves to visit the park. He loves to go to school – and he is making great leaps in his ability to communicate. He is a joy to be around and if he could go to school, go to the park, swim, and so on, with his peers, a generation would be better informed and a generation would grow up for whom termination is not the obvious or only answer to what is seen as purely a medical problem. A generation in which everyone is a citizen with common human needs and a contribution to make, whether they need a little help or a lot.

I know that inclusion, mainly for historical reasons, isn’t easy to achieve. But it’s currently getting worse: we live in an increasingly hostile climate in which government policies, procedures, and propaganda, and the public attitudes they foster, threaten to force disabled people back from the society they have pushed so hard to enter, into nursing homes, segregated schools, or as prisoners in their own homes, just as at the same time medical advances such as NIPT make it easier and “safer” to identify and “deal with” disability in the womb. These combined pressures could see minorities such as the Down Syndrome community effectively eliminated in our lifetime.

We have a collective responsibility to turn this around. Our government needs to overhaul the benefit system and its mind-set so that it is no longer in contravention of Article 19 of the Convention on the Rights of People with Disabilities. Our local councils, businesses and attractions need to make Changing Places and accessible design a matter of course. As citizens, we need to lobby for better allocation of funding to children with ASN in mainstream education, for our rights to accessible public transport, and so on. As medical professionals we need to modify our language from “I’m sorry,” “There’s something wrong with your baby,” “Not able to live a ‘normal’ life….” To “Congratulations!” “Your baby may need more support than others,” “We can help you to live an ordinary life.” As parents, we need to foster our children’s naturally inclusive nature, not nurture a sense of disgust at anything different. As parents of disabled children, and as disabled self-advocates, we need to put ourselves out there as beacons of human rights. Because ignorance of disability is not bliss. Ignorance of disability is deadly.

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Too many futures

Why are the parents of disabled children always so tired? There are all the obvious reasons of course: so little sleep, so much paperwork; too many hospital stays, too much wine, cake, and coffee… but there’s one reason that I haven’t seen discussed so often: we spend so much time thinking about the future.

How often do you think about the future? About the trajectory life is likely to take? Do you feel prepared? Perhaps you have plans to travel the world, take up a hobby, or give something back by volunteering? Maybe you worry about how things will turn out, or maybe you live in the moment. We’re all aware that life often doesn’t turn out as we expect. That even the best laid plans don’t prepare us for what lies ahead. That’s why we make preparations that cover a wide range of scenarios: we put aside savings, start a pension, make a will, take photos, get vaccinated, … Preparing for the future is tiring. Worrying about the future is tiring. But hopefully once we’ve prepared a little, we can stop worrying quite so much, and get on with enjoying life in the moment.

But what if there are several likely scenarios that all require very different preparations? Physically, emotionally, financially, …? Preparing for, and worrying about, multiple, wildly differing futures is exhausting. That’s what many parents like us have to do. We have to think about too many futures.

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There’s the one where you continue caring for your child as they grow up and grow old. In this future, you have to prepare your child and yourself for a long term stay in the big, wide world. You have to make sure your child gets all the therapy, does all the exercises, no matter how unpleasant, that will set their body and mind up for the healthiest adulthood. You have to consider the surgeries that may benefit them longer term, no matter how risky and painful in the present. You may have to prioritise postural maintenance over cosy cuddles, practice and practice and practice over rest and relaxation.

You have to plan and prepare for transitions, for secondary school, for adult services, for PIP assessments. You have to ensure your house is adapted to meet your child’s needs as they get larger and heavier. You likely have to find funding for a proportion of these adaptations, particularly if you want them to be suitable for the rest of your family as well. You may try to see as much of the world as you can while your child is little, while you can manage without a hoist and a changing bed, before the world starts closing in around us.

You have to prepare yourself financially, for the fact that you may never again be able to work full-time ,or at all. You have to look after your own physical and mental health, for the long term. You try to make time to stay physically fit and strong. You may need to seek out, and fight for, respite options before you want or need them, because you know you’ll will need them, and accessing support can take years, if you qualify at all.

You start battles for the things you know your child and others like them will need in the future – accessible buildings, changing places toilets, better public transport, parking spaces. You fight the ever harder battles against cuts, austerity, stigma, ignorance, and hate.

You worry about having to care for both your parents and your child. You worry for your child’s siblings, whether they will be forced to compromise their own future plans. You fear for the future of your relationship with your partner. You fear becoming more and more isolated within your community. Yet you hope that this future comes true.

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Then, there’s the one where you lose your child too soon. You try not to think about this, but sometimes it pops into your head and catches you unawares. And you know you have to prepare for this scenario too: you have to focus on making memories fast. On going places, taking photos, snatching cuddles. On making more of an effort to see friends and family. You skip respite sessions because you don’t dare lose a minute together. You struggle on without the adaptations you need because later they will just be painful reminders. You neglect your own health – there’ll be plenty of time for that later.

But at the same time you have to prepare for life after. You keep your career going because you’ll need it. You try to subtly prepare your child’s siblings for the loss, as if anyone could ever be prepared. You wonder how you yourself will cope with the loss, with the lack of purpose, when your whole life has centred around being a carer. You think about end-of-life care. You make a list of all the things that will need to be done – notify the DWP, hand back the Motability car, cancel the endless deliveries of syringes and feeds, … You plan funerals in your head. You probably think about funerals too much.

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Scariest of all, there’s the one where your child outlives you. I think many of us bury our heads in the sand when it comes to this one. The future is just too grim, the outlook too bleak. There are too many horror-stories and not enough examples of best practice. But, prepare for it you must. Your child’s siblings mustn’t feel obliged to take on a parents’ role caring for him; can you make sure everything is in place so they don’t have to?

There are the complicated financial and legal preparations: wills, trust funds, guardianship, and power of attorney. There are practical arrangements. Everything must be documented: care plans, therapy schedules, medications, likes and dislikes, the intricacies of communication and how your child shows discomfort, pain, and distress. You can write care plans and make digital passports but what if you forget something? How to give NP-suction through his twisted airway … how he says hello … how to tell if he’s tired … how to pass on the things we know only by instinct and intuition that can’t be written or said …?

Without you, who will make sure your child is not only fed and clothed and medicated, but happy, loved, and befriended? Who will make sure he has contact with his friends, remains known in his community? You need to do as much as you can now to build relationships, to help him make friends with his neurotypical peers, to make sure he’s widely known in the community so that there are as many folks as possible looking out for him.

And, you have to prepare for all these futures now, at the same time, together, because failing to prepare for any of them is just too risky. Or at least you should prepare for them, and if you don’t feel adequately prepared you worry and stress all the more. You may even fear them. What if you fear all of them? What if you feel guilty for hoping one of them comes true?

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But there is a fourth future, one I until recently had no concept of (thanks, Partners in Policymaking). One where your child grows and thrives, makes friends, and is known, loved, and valued in your community. Where it’s no longer all on you. Where your child teaches you and all those around him; where your community becomes a better place because of what he teaches. Where his siblings become not duty-bound carers but gentle warriors. Where people you hardly know surprise you by independently making changes towards inclusion and accessibility. Where your son brings people into your lives that you would otherwise never have met but who become your best friends and your closest allies. Where you learn new skills, make new priorities, and realise potential you never knew you had. There are still preparations to be made, of course, but this is a future filled with dreams not fears. Where, whether your own child lives or dies, together we build a better world for everyone.

Dear neighbour

Dear Neighbour,

How are you? I hope you’re having a good day. Me? I’m tired. Tired of squeezing a 25kg wheelchair into a car boot through a six-inch space. Tired of soaking the backs of my legs against the front bumper of your wet and dirty car. Tired of trying to squeeze a big car into a tight space when I’m in a hurry to get inside and do physio, medications, feeds and nappy changes. Tired of having to leave three children under seven on their own in the house while I inch my car forward just so I can get something out of the boot. I don’t understand why you would park up so close behind anyone that they couldn’t open their boot – but the Motability car of a disabled child who uses a wheelchair?

I was so excited the day we picked it up. We’d struggled on until Benjamin was three and we could join the Motability Scheme. Commuting to the hospital 30 miles away by train, running around trying to get a Car Club car when he was suddenly taken ill at school. I couldn’t believe it when the council arrived to paint our disabled bay the very day the car arrived! It was like a good omen – how often does that kind of thing happen? The car has made our lives so much easier, and safer. But they could be easier still if you were a little less petty and proprietary.

 

Our car is nearly 5 m long – we need a big car to fit in our family and the wheelchair and all the medical equipment, feeds, plastics and pads. Our disabled bay is 6 m long. If you take up a few precious inches of it, it doesn’t leave much manoeuvring space, does it? I’m not the best at parking – if I didn’t need to use this space I would go up the road or round the block to a larger one, to save myself the daily stress. But I do need this space, so I can’t.

What do I need to do? I’ve tried joking with you. I’ve tried knocking on your door and asking you politely. I’ve tried pointing out the sticker in the window that says ‘Please leave space for my wheelchair.’ I’ve tried parking at the front of my space (you encroach further), at the back of my space (you park as close as you possibly can). Hell, you’ve even had two parking tickets!

I know I am the underdog here. You are a patron of the arts, supporter of local causes, general town VIP. I am a nobody, an incomer to the town, a young (okay maybe not so young) mother, a benefit-claimant. But does your status entitle you to make our lives harder? Does it give you the right to ignore the Highway Code? (Section 2 part 239 says: …do not stop too close to a vehicle displaying a Blue Badge: remember, the occupant may need more room to get in or out.)

We absolutely love where we live, and we are blessed to have friendly, kind, thoughtful neighbours – most of whom I now call friends. But I’m starting to dread going out of the front door and all the stresses it now entails. All I need is to be able to park my one car in the disabled bay designated for it, and open all the doors, so that I can get my child and his equipment safely from house to car and back again. You have three cars; a healthy daughter; two functional legs. Would it really hurt to walk an extra 15 yards to your car? Sometimes you even park right up to ours when there’s a space directly in front of your own house anyway!

I’m sure your life isn’t easy either. I try to live by the adage that everyone is fighting a battle I know nothing about. I just don’t understand why you persist in making our lives more difficult and dangerous. We’ve come so far in this country in terms of access and inclusion, laws and recommendations. But attitudes like yours are still a stumbling block. Please, cut us a break and give us some space.

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I wish I didn’t have to rely on a car, but it’s not easy to use public transport with Benjamin – so our car really is our freedom

With thanks,

Benjamin’s mum

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?

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.

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

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