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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Knowing better

When I was ten years old, I had a best friend. Her name was Helen. She lived ten minutes up the road on a smallholding with ponies (!) and had her own (rickety, damp-smelling) caravan, where we used to spend our afternoons hiding from our little brothers, singing Jason & Kylie songs, trying on lipstick and eating Cadbury’s Crunchies. When we were eleven, on the basis of a ‘verbal reasoning test,’ we were sent to different schools: she to the comprehensive, while I went to the girls’ grammar. I didn’t understand what was happening, but I remember crying and begging my teacher to fix it so that we could stay together. It was for the best, she said. That was the system. There was nothing she could do. I didn’t realise at the time, but it was my first taste of segregation. I didn’t know any better.

I never played with Helen again. I had a good education, a privileged education. An education my parents wanted, worked hard for, planned, and bought a house in the right place for. But it was a segregated education, and not entirely a happy one. At my school there were no boys, few ethnic minorities, and I remember no one with a disability. In a world of uniformity, I was picked on as the odd one, and I thought it was my fault. I didn’t realise it was the system that was at fault – how could I? I didn’t know any better.

When I was 38 weeks pregnant with my second child, I was advised to abort him on the grounds of his likely disabilities, his hypothetical quality of life, and his potential impact upon the lives of those around him. I almost followed that advice – I didn’t know any better. Many more parents do follow that advice, because exclusion and segregation don’t start with the ‘eleven plus;’ they start at 24 weeks of pregnancy. This is the point at which disabled children are denied the automatic right to life that is granted to non-disabled children. Right across the country, at their twenty-week scans, mothers bearing children with something as innocuous as Down Syndrome are told, “I’m sorry,” when they should be hearing “Congratulations.” They rarely challenge it. They don’t know any better.

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But – oh my goodness! – the impact Benjamin has had upon the lives of those around him! The opportunities he has brought us; the things he has shown us; the friends we have made; the gifts we have uncovered in him and in ourselves.

Even so, until a few months ago I assumed that Benjamin was destined for a life in special schools – I even fought to get transport so that he could travel twenty miles away from home to a special school. It’s a good school, with fantastic staff, top-notch equipment, and excellent support. It’s the school best able to meet his needs. However, Benjamin spends the vast majority of his time in a class of seven disabled children. He has minimal interaction with his non-disabled peers and they have little knowledge of him. Because his school is a twenty-mile taxi ride away from home, he has no chance to become known in his local community, to make local friends, to walk to school with his siblings, to have a school photograph taken with them. And I mourn these things.

I assumed that Benjamin would spend his afternoons and evenings at home with me and, when he is finally spat out of school by the system, into a community that barely knows him, would move to a life in day care centres, if he lived that long. I assumed that he would wear the clothes other people put on him, watch the TV shows other people switched on, maybe play boccia with other disabled people. He would have little to contribute. I didn’t know any better.

Now, thanks to a course called ‘Partners in Policymaking,’ I realise that Benji could – and should – be supported to go to his local school with his sisters; where once I begged for special provision for my “special needs” son, now I crave an ordinary life for him. He will go to Beavers when he’s six (they’ve already agreed to take him), take part in our town gala and the church summer holiday club, swim with his friends, go out in the evening. He should choose his own clothes and toys, and have a turn in charge of the TV remote. He can be happy, have friends, and play a meaningful part in his community.

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“Inclusion doesn’t meaning getting wet though, does it?”

Partners in Policymaking brings together disabled self-advocates and the parents of young disabled children to work towards a more inclusive society. To be honest, I hadn’t realised that our society was not inclusive already. I certainly hadn’t realised that the life I had envisaged for Benjamin was not inclusive. But the becoming-ever-so-slowly-more-equal rights so hard fought for by women, ethnic minorities, and the LGBT+ community do not yet extend to disabled people. Exclusion, segregation and deliberate discrimination are rife in the UK today. And I had been a part of it. I didn’t know any better.

Segregation is at its worst in the Assessment and Treatment Units that are no improvement upon the ‘institutions’ of the past. But even well-meaning initiatives – ‘Purple Tuesdays,’ ‘Autism Hours,’ special waiting rooms at railway stations – unwittingly perpetuate the segregation which maintains an ignorance of the fact that disabled people are just people, with gifts and capacities, needs and wants, just like everyone else. No wonder many of the abled consider the disabled to be a drain on society, if that’s all we let them be. Why should hard-working businesses spend money building Changing Places toilets – can’t disabled people just shop on the internet? Disabled people don’t go the pub or the cinema, do they? Well, surprise surprise, if you build them, we will come.

The good thing is, inclusion doesn’t need to cost any more than segregation. If all the funding that were spent on specialist schools and units, on transport across – or out of – local authority, and on all the excellent teachers and support staff in special schools, were transferred to mainstream settings, everyone could be supported to reach their full potential. If the huge cost of keeping children and adults locked up in ATUs were diverted into providing support and building relationships in their community, we would see clearly that there was no need for these institutions in the first place.

The great thing is, including disabled people in ordinary, everyday life doesn’t make things worse for the rest of us! Why would it? It doesn’t make things worse when ethnic minorities, women, and gay folk are included. It makes life richer. It makes our environment more accessible to all. It makes our children more accepting, and kinder. For instance, if we can meet Benjamin’s needs in terms of access to our local swimming pool, we undoubtedly make that pool more welcoming for families with young children, and many others. And when Benjamin can access the pool, everyone gets to see the joyous smile on his face as he relaxes in the water. In sharing the water with Benjamin, his peers start to experience disability as normal and not something to be feared. When disabled people are included, they become visible; when they become visible, we see that they are just people. When we see that we are all equally flawed and equally gifted, there is no reason to exclude anyone. The late Jean Vanier put it much better than I can: “When we love and respect people, revealing to them their value, they can begin to come out from behind the walls that protect them.” We start a cycle of inclusion: after just one generation, everyone could know better.

Benjamin
A drain on society?

The lovely thing is, inclusion doesn’t have to mean more fighting. Inclusion really isn’t all about ramps and doorways, toilets and hoists, infrastructure, equipment, personal assistants, … and money. Inclusion can start at home and in the community. It starts by making people feel welcome, building connections with those who are different to ourselves, recognising everyone’s gifts and capacities, nurturing relationships, and solving problems together.

I don’t feel guilty about how I’ve behaved in the past because, being brought up in a segregated society, I didn’t know any better. I don’t blame the professionals, who are taught to focus on differences, problems, and deficits; who don’t have the time, training, or freedom to consider people’s potential, to realise people’s dreams. They don’t know any better. But the United Nations knows better (the UK is one of only two countries to have placed restrictions on the implementation of Article 24 of the UN Convention on the Rights of Persons with Disabilities, which covers inclusive education). Disabled people like Benjamin know better. My daughters will know better. Everyone needs to know better. So I don’t feel guilty, but I do now have a responsibility to act.

I feel like I’ve aged several years during the eight months of the Partners in Policymaking course. Partly through lack of sleep, intake of gin, and travelling. But mostly I feel like I’ve grown up, from an angry child to a constructive, collaborative adult. Maybe. I’m a work in progress – aren’t we all? The wonderful thing is that changing the world no longer seems to require power, position, or politics. By changing our lives, and the lives of those around us, we can break that generational cycle. Step by step we can create an inclusive world.

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Daring to dream

For the past couple of weeks, Benjamin has been in the habit of waking in the early hours of the morning, hot, agitated, dystonic, twitchy. I’ve tried everything I can think of to relieve his discomfort: chest physio, pain relief, muscle relaxants, suctioning, repositioning. I’ve checked his heart rate, breathing rate, oxygen saturations and temperature. I’ve changed his pad, cuddled him and stroked his hair, massaged his tummy and exercised his legs, we’ve listened to music and we’ve lain and watched his starlight projector together. I’ve had to be nurse, doctor, and therapist: diagnosing what’s wrong, making the right clinical decisions, and guessing what will work. Each time he falls back to sleep hours later, leaving me none the wiser.

I wrote once, towards the start of this journey, that whilst I knew my child would be disabled, I didn’t realise they would be sick. That seems so naïve now, for in many ways sickness has taken over our lives. Benjamin is on a dozen regular medications; he needs twice daily chest physio and antibiotic nebulisers; he’s fed a complex cocktail of chemical nutrients through a tube; his temperature and heart rate need regular monitoring; and managing his bowel movements is practically a full-time job! As we lurch from clinic appointment to therapy session to full-on critical care stay and back again, our lives are dominated by Benjamin’s health.

Does this mean we have succumbed to the dreaded ‘medical model’ of disability? Where the disabled are considered to have something ‘wrong’ with them – something to be cured, treated, isolated, stigmatised, or even locked away?

With some disabilities it’s relatively easy to see a dichotomy between the medical and the social, but with children like Benjamin – with complex medical needs on top of, and largely due to, their underlying neurological differences – it’s more difficult to make clear distinctions. Whilst outwardly championing the social model, I’ve slowly fallen into the trap of seeing my son more as a patient than as a child.

It’s abundantly clear in his day to day life. While we’ve always been flexible, even spontaneous, with the girls, Benjamin is pretty much always in bed at the same time, hooked up to his feed pump, whatever else is going on around him. When we go away anywhere, while his sisters are free to run off and explore the minute we arrive, I shunt Benjamin off immediately to start setting up his positioning systems and field hospital, making sure all the equipment and drugs are in place so that his routine can run as smoothly as at home. While the girls are encouraged to run in the wind and jump in the puddles, some days I daren’t take him out of the house at all if the weather is too hostile.

And, while that means Benjamin stays as healthy as possible, it also means he misses out. He’s slowly but surely becoming relegated to a second-class member of the family, strapped to his profiling bed, whilst the rest of us carry on the business of living in the next room. Yes, we do his morning chest physio and nebulisers at the kitchen table alongside the girls eating their breakfast – but one day soon the need for efficiency and to minimise time-consuming hoist transfers will probably necessitate getting him ready in his bedroom. Yes, this year we managed to get all three children into our bed to open their Christmas stockings together – but soon the time will come when we simply can’t get Benjamin safely upstairs. Yes, his little sister likes to climb onto his bed in the mornings as he’s getting ready for the day, but how long before she tires of playing with his teddies and chatting with the carer?

And when Benjamin misses out, we all miss out. When Benjamin is excluded from family life, we are no longer a family.

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This isn’t easy stuff to admit, not least because it makes the future look so bleak. If even I, his mum, am starting to relegate Benjamin to a patient rather than a son and a sibling, to a list of medical procedures rather than a child who needs to learn, grow, interact, love, and be loved, what hope is there for his future care providers after I am gone?

Thank goodness, then, for his school! His amazing teacher and support assistants treat Benjamin like any other child – he shares his news every morning; he studies the same topics as everybody else, in whatever way works best for him; he is able to choose toys to play with; he spends time with his friends; he gets homework; he is not allowed to shirk PE! Under their inspiration, Benjamin is thriving, growing, and a fully-participating member of his class.

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Class ceilidh, Benji-style

And thank goodness for Partners in Policymaking, the internationally-recognised course for disabled self-advocates and parents of disabled children. When I joined the course late last year, I was all fired up to work towards Partners’ aims of inclusion and social justice; of driving change at national and local levels through policy and practice. But I wasn’t expecting it to work change in me. However, just three sessions in, already its gentle yet powerful message is transforming my vision (if I even had one) of life for Benjamin and our family.

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Most importantly, Partners is giving me permission to dream. With a child like Benjamin it’s so tempting, and understandable, to live day by day, hour by hour. After all, we don’t know how long we will have him for so let’s make the most of every moment. Why waste time looking forward or back? And yet… what do we have to lose by assuming that Benjamin does have a future? We have everything to gain by thinking about what we want that future to look like and working towards it right now.

I am learning to dream that Benjamin will be happy, will be able to communicate his needs, desires and opinions, will have friends, and will be known in his community. I want to identify his particular gifts and skills, and uncover his true character. He should be able spend time with his friends outside of school – just like his sisters do. Why shouldn’t he join Beavers or an after-school sports club, or do ballet?

I am starting to dream of a realistic plan for his long-term care that doesn’t compromise on Benjamin’s enjoyment of life and involvement with the community. I want us to spend time together as a family – for my children to be children, together; for the girls to be sisters, not carers; and for Benjamin to be a brother, not a burden, now and in the long term.

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I dream that we are able to be spontaneous, not constrained by Benjamin’s care needs. I want us to be able to make the most of the beautiful part of the world in which we live. We should be able to spend time together in the garden, to pop down to the harbour for an al fresco dinner at the pizza van, to play on the beach, to go on holiday.

In fact I have a list of – inspiring and desirable, but feasible and achievable – dreams nearly two pages long! But above all I dream that we can live an ordinary life.

It actually starts in those early hours of the morning, barefoot in my pyjamas, when the rest of the family are asleep. When it’s just Benjamin and I, and I am no longer torn between too many tasks, I realise that, first and foremost, he’s my child. When the hustle and bustle and the schedule and routine are stripped away and I’m just a mother responding to her little boy’s call. His need to be held, comforted, and listened to, just like any other child.

And, as I engage with him, I find a potential explanation for why Benjamin has been so upset recently. He has two wobbly teeth! A disconcerting and painful feeling for anyone, let alone a child as unprepared as Benji. I hadn’t been looking out for this, because the medical professionals had told us his small and under-developed skull would likely result in slower-than-average jaw and tooth development. But at just five years old, a good year earlier than his elder sister, he’s going to lose his first baby teeth already. My little boy really is growing up. He’s got a future to grow into, a future to dream for. Now I need to go out and make it happen.

Breaking the chain

Last week was a tough one. My eldest was under-the-weather and whiny. My youngest was angry, violent and loud. My husband was overworked and unwell. Benjamin’s health was up and down, as usual. No-one had enough sleep.

We had problems with transport, issues with medication, missed phone calls from professionals, unnecessary arguments, and at times it felt like I would never make it to the course I was due to go on at the weekend.

But did I ask for help? Did I call anyone to let off steam? Did I dare admit it’s been tough? No. These are things I find incredibly difficult.

In my mind, it’s because I voluntarily chose this less-travelled path. Unlike many of my fellow parents of disabled children, who received a diagnosis at birth with that painfully inappropriate “I’m sorry,” or those who faced the agonising months and years of feeling that ‘something was wrong’ before anyone would take them seriously, I had the luxury of choice and preparation. I knew that Benjamin was going to have significant physical disabilities, learning difficulties, developmental delays, and a limited life expectancy. I was offered an opt-out and I refused to take it. So, I’ve brought this all upon myself and my family. I’ve made my own bed and that’s where I must lie. I deserve everything that’s happened to me and I don’t deserve any help.

And because, for all the unborn Benjamins out there, I need to prove I can do this. I have to keep up a façade that everything’s perfect, because anything else would be fuel to the already rampant fire that disabled people and their families are scroungers, burdens, and second-class citizens. That it’s perfectly justified and in no way discriminatory to allow them to be aborted up to birth.

In other words, because I’m proud. People want to help, but I don’t ask and I won’t let them, because I fear their unspoken, “We told you so.”

I shared these feelings with some fellow parent bloggers and found that – while few were in the position of a prenatal diagnosis – many had experienced similar feelings. “I knew the chance of having twins was higher with IVF, so I felt I couldn’t ask for help when they arrived.” “My previous pregnancies were risky, so by deciding to have another child I had only myself to blame if anything went wrong.” “When I fell pregnant for the fourth time my mother told me I should have an abortion … I feel I can’t ask her to look after the kids now because she will think it’s my fault for having another child who now has so many appointments.” “I struggle to ask for help as I feel the need to prove the naysayers wrong.” “Because I wanted him so much, he’s mine; my burden.”

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But, they also pointed out that, “Any pregnancy is risky.” “No-one knows what they’re going to get when they choose to have a child.” “Everyone who has children faces the possibility that their child may need extra help, support, care, or they themselves may need to support due to circumstances outwith their control.” And the wonderfully insightful Alison of Downright Joy simply said, “It takes a community to raise any child and your community are far better off for having your child in their midst… You and your child can give them an incredible opportunity to really value what it is to be human and live in community.”

I need to swallow that pride, don’t I? In being too vain to admit it’s hard, reluctant to ask for help, scared to show the ‘warts and all’ picture, I am also failing to show the beauty that Benjamin brings to our lives. I fought for Benjamin like I have never fought for anything before or since. But what’s the point in fighting for something if you don’t share it? Neither Benjamin nor his sisters belong to me; I don’t have exclusive rights.

How will the prevailing view of disability as something to be cured, shut away, or eliminated, ever change if we don’t give our families, friends, and neighbours the chance to experience disability and neurodiversity as things to be embraced, included, and learnt from? As normal. Families with disabled children need a village, and that village needs them too.

I did, after all, make it to my course this weekend. We were learning about inclusion (more, much more, on this in future posts). We learnt that the first key to inclusion is as simple as a welcome, a greeting. Many of us find it hard to greet disabled people. We don’t know how to say “hallo” in Makaton. We don’t know whether to make eye contact. We can’t look beyond the wheelchair. And such awkwardness stems, itself, from a lack of familiarity, from segregation and exclusion. It’s a self-perpetuating cycle – until we break the chain. By keeping Benjamin to myself, by trying to do it all myself, I’m extending that chain still further.

I want to share this letter written by Parents for Inclusion. I wish I, and my family, had read it before Benjamin was born.

“Dear Little One,

Welcome to the world! We are so glad that you have come. You have a right to be here and belong. You belong to your family, your community, your culture, your country, this world which we share together. How wonderful to have you here.

The people who love you may be feeling sad and scared and will need to cry away their fears. This does not mean they don’t love you and that you are not right for each other.

Like all children coming into this world you need to be loved and valued for who you are including any difficulties you may be facing. You need to be loved, touched, cuddled, smiled at, sung to, talked to, made to feel safe.

As you grow up you need to have fun and laughter, play and music, friends and people who are willing to listen and learn from you. Yes, you may need to have more help and support at times possibly all the time; but remember, the most important thing for you is to be included in ordinary life and for your life – long or short – to be valued. That is not different to any baby in this world.”

Yes, I deserve my beautiful boy … but everyone else deserves a part of him too. It’s time to break the chain.

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.

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.”