Not Like The Poster

Our boy is not like the public poster-face of Down’s Syndrome. He won’t be sitting GSCEs when he leaves school, he’s unlikely ever to be a model, run his own business, perform in a play, or a in TV show. I doubt if any organisation aiming to raise positive awareness of Down’s Syndrome would want to feature us as part of their publicity campaign.

This is not me underestimating him, or absorbing or giving in to society’s low expectations of people with Down’s Syndrome. This is me being hand-on-heart honest and realistic about how he is right now. This is me accepting how he is, accepting him for who he is.   

When he was born, I had all kinds of ambitions and plans for him: he would go to a mainstream school, he would grow up to have a job, find love, maybe get married, have his own independent (or nearly so) life.

We would equip him to do all these things.

I read to him from the moment he was born, even in the NICU. I brought a pushchair with a seat that could be turned to face me so that I could sign to him all the time, even when out and about. I brazened out the story time sessions at the local library, took him to Tumble Tots. I enrolled him in a mainstream nursery, and in a specialist provider too, to give him a developmental ‘leg-up’ before starting school, walked miles to take him to physio and speech therapy.

But even before he reached school age it became apparent that he would be totally lost and overwhelmed in a mainstream school, certainly where we live: schools and classes tend to be large here and inclusion is generally poor. The ones I approached had neither the understanding, the infrastructure, nor the will to even keep him physically safe. There are, however, some excellent specialist schools, and he has thrived in this supportive environment.

However increased understanding and increased maturity have not yet brought about an increased awareness of danger, or an increased willingness to follow instructions, rules, and procedures laid down by others, no matter how necessary or important.

Nor have they brought about a decrease in his tendency to abscond or quietly sneak off and wander away.

They have not brought about an increased awareness of the personal boundaries of others, nor the rules and expectations governing appropriate behaviour.

At the moment, I honestly do not know if he will ever be able to fit into any kind of workplace, or, indeed, if it will be possible for any employer to actually keep him safe.

What the passage of time has brought about is an increase in the self-stimulating behaviour or ‘stereotypies’: the rocking and pacing, the random whole-body jerks and sudden vocalisations. When out and about we are aware that others find these behaviours distracting and even alarming. We are starting to get some funny looks which I studiously ignore.

I ignore these looks because one thing that has not changed through all these years of having to adjust my hopes, ambitions, and expectations to fit our reality is the love I feel for my son and the pride I have in him.

These are unconditional and do not depend on what other people think of him or his behaviour, they do not depend on his level of ability, nor on how close he can come to being like a typical person (I roundly reject notions of ‘normality’, throw them over my shoulder in disgust without a backward glance). I love him for who he is, I am proud of who he is, and I will look anyone in the eye and tell them so.

Down’s Syndrome Awareness Month: Self Awareness

Most people are aware of Down’s Syndrome, in as much as they can recognise when they see a person with it and are aware of what they THINK it is. Most people seeing my son would be aware that he has Down’s Syndrome. But what about Freddie himself? Does he NEED to be aware that he has it?

It was seldom, if ever, necessary to mention it at home. At home, Freddie was just Freddie, just one more quirky individual in an already quite quirky family, a child with his own particular set of needs, just as his brother and sister each had their own particular needs which were not the same as each other’s or those of the kid down the road.

When you came right down to brass tacks, his needs weren’t that much different to most people’s really. On a day-to-day basis, we didn’t really think about Down’s Syndrome at all. As far as Freddie was concerned, he was no different to anyone else.

 But then I thought: what if he overhears us talking, to a doctor or another professional, or someone else? What if he realised we were talking about him and thought it was some kind of secret, something to keep quiet or be ashamed of? Or what if he heard it from someone else, somebody with incorrect and outdated ideas of what Down’s Syndrome is? What if his first introduction to the fact that he has Down’s Syndrome was someone else’s negative misconceptions?

An incident occurred that demonstrated to me just how easily this could happen.

Luckily, that time, Freddie remained blissfully unaware, but it made me realise that he needed to know, and he needed to hear it from us, so that we could take charge of the narrative and equip him with the correct information. But how to broach the subject with him? We didn’t want to make a big deal of it, we just wanted to present it as a fact, like his blue eyes and pale sandy-coloured hair are facts.

As it happened, a natural opportunity presented itself when I told him one day that we had an appointment at the Orthotic clinic to get him measured up for new boots. He asked me why we had to go the clinic to get boots for him. I explained that he has a thing called Down’s Syndrome and that some people with Down’s Syndrome have extra-stretchy tendons that can make their legs very tired and achy when they were walking.

He didn’t ask many questions about it on the day or afterwards, but now that we had broached the subject, I would occasionally point it out to him if I saw someone with Down’s Syndrome on TV, just so he’d know he wasn’t alone – role models, if you like – but he never showed any great interest, to be honest.

Then one day, we bumped into an acquaintance of mine who also has a young person with Down’s Syndrome. We chatted for a while, then said goodbye. Freddie and I went into a café, and as we were waiting at the counter, he asked me how old the young person was. I told him they were the same age as him. He noted that, also like him sometimes, the young person was using a wheelchair.

I took the plunge and asked him if he had noticed anything else they had in common

He said they both wore glasses. “Anything else?” I fished, wanting to test his understanding, to see if he noticed. But he hadn’t, so I told him that they, too, had Down’s Syndrome.

This time he asked questions and I answered them in straightforward terms, talking about chromosomes, which I described as ‘building blocks’. We talked in simple, general terms about what it might mean for someone if they have it, and about how it was a part of who he is, but only a small part.

Then he suddenly (and randomly) announced that he’d like to be a barista and a baker in a coffee shop just like the one we were sitting in, so we started talking about that instead.

Afterwards I was browsing in a shop when Freddie suddenly shouted, loudly: ‘Has she got Down’s Syndrome?’ Out of the corner of my eye I could see a pushchair, and at that moment I wanted the floor to swallow me up, imagining what the child’s mother would make of Freddie’s pronouncement. But a voice piped up: ‘Yes, that’s right, she has!’ 

Since then, Freddie has asked me a few times if he has Down’s Syndrome, do I have Down’s Syndrome, does Nana, does his sister? So it seems like he is beginning to explore his understanding of it.

One thing I do hope he understands is that we wouldn’t have him any other way.

Letter To My Adult Autistic Child

It’s the best part of twenty years now since you were diagnosed with Autism, and just over three since you were diagnosed with ADHD. Looking back over those years with hindsight I can see so many ways in which I could, and should, have done better.

I don’t know if I can ever apologise to you enough for my failings.

I’m sorry I didn’t notice sooner that you are neurodivergent.

You were my firstborn, the baby I’d waited for so long. In my eyes you were perfect. I’d never heard of autism, ADHD, dyspraxia. You always seemed so contented and happy, especially once I got you onto a four-hourly feeding schedule.

When you were slower than most to sit, to stand, to walk, I decided that you would do it in your own time and that I was content to wait until you did. But if only I had asked questions, kicked up a fuss, maybe you would have got a diagnosis for your co-ordination issues as a child, opening the door to some kind of help. But now you’re an adult, none of the professionals are interested in exploring the possibility that you have dyspraxia, and you still injure yourself on a regular basis just moving around a room.

When you showed no interest in playing with your toys, but just sat and looked at them without ever picking them up, I thought you just weren’t interested in those particular toys. I must’ve spent hundreds and hundreds of pounds buying different kinds of toys for you on birthdays and Christmases, but you never played with any of them.

As a small child, of course, you couldn’t tell me that you didn’t see the point of play – it took fifteen years or more for you to be able to articulate that. But how did I, as a mother and as a former child, not understand that your lack of play was a red flag?

And I’m sorry that the only vocabulary I have for all of this is the language of deficit and ‘problem’.

It’s the only language I’ve ever been given.

But your disinterest in imaginative play hasn’t really been a problem in the long run, has it? It might have been one of the things that marked you out as different to most of your peers, but your preference for fiddling with gadgets rather than playing with toys has taught you so many skills and ultimately probably helped lay the foundations for your career.

When it was just you and me at home, doing our own thing, we never had a problem, did we? You were gentle, charming, and funny. You noticed things that never entered my head. You taught yourself to read like you’d absorbed the knowledge by osmosis. I was as delighted with you at the age of three as I was the day you were born. We were happy and life was good. It was only when nursery and school came into our lives that the talk of ‘problems’ began.

I’m sorry too, that I listened to the psychologists, teachers and other professionals who told me that I needed to make you ‘fit in’ to the world and behave like your typical peers.

I wish I’d been able to see the harm in this. But the world I grew up in was one of conformity, respect for authority and (especially as a woman) making sure you took up as little space as possible. I can’t believe it’s taken me until now to realise what a crock of you -know-what this is.

I’m sorry I never realised that I ought to listen to adult autistic self-advocates instead.

Then I might have better understood the ways in which your experience of the world might be different from mine.

Then I might have better understood how you might struggle with some of the things that most people take for granted.

And I might not have inadvertently forced you into situations which must have been almost unbearably uncomfortable for you.

But it wasn’t so easy to find people back then. I didn’t know about social media in those days. I’m not sure Twitter was even a thing. Tiktok definitely wasn’t.

I’m sorry that I didn’t fight harder to get you the help you needed.

I was told repeatedly that there was no help for us – none of the services available in our area had a remit to work with us because you had no learning disability. So, I accepted this and booked myself onto every free course I could (the only ones we could afford) to try to help you myself. But on my own I wasn’t enough. I wish I had made more fuss, kicked up a stink, shouted from the rooftops, until somebody, somewhere, listened.  

I’m sorry that I didn’t realise that autism wasn’t the only issue.

The fact that none of your teachers nor the Autism Outreach Team ever noticed either is of no comfort to me. I should have known.

I’m sorry that in all these ways, and others, I haven’t been the mother you needed me to be.

But I’m not sorry you’re autistic, because autism is part of the person that you are. And I love you exactly the way that you are. I am as delighted with you now as I was the day you were born.

And even in the hard hours, that never changes.

Autism Walks into a Bar

A person with autism, a person with ADHD, and a person with OCD walk into a bar …

and no one notices.

That’s it. There’s no punchline. This isn’t a joke.

Most people think they are aware of autism, they think they know what it looks like.

But they don’t.

Not really.

Because it is so easy for some families to slip under the radar.

On the surface, the mum, dad, two teenage kids and granny that have just walked into the restaurant look almost exactly like all the other diners.

Some of the other diners might characterise the dad as a miserable old git if they happen to notice that, directly after he speaks to the waitress, the volume of the music reduces noticeably.

If they see that, despite having asked for the music to be turned down, he and his wife have allowed the kids to keep their earbuds in, they will probably just tut and feel superior because they’d never allow their kids use devices at the table – that’s just plain bad manners!

What the other diners are not aware of is just how unbearably loud that room is, even without the pounding music – the hum of a dozen or more conversations, the clatter of dishes and the clink of cutlery, the banging of the kitchen door, the hiss of beer pumps or coffee machines, the scraping of chairs.

What they probably wouldn’t understand is how letting the kids have sounds of their choice fed directly from their devices into their ears dulls the overwhelming cacophony of background noise just enough to prevent a fight-or-flight response or public panic attack.

What they would also not be aware of is how having her favourite music piped directly into her skull drives out the repeated, obsessive thoughts of death and disaster that are frequent, unwelcome intruders inside the younger child’s head; the only other way to get rid of them is at the point of a blade, cutting so deeply into her skin that the sharp sting of the pain drowns out all else.

But the other diners can’t see the scars, they are covered by her clothes, nor can they see either set of earbuds as they are covered by the kids’ longish hair.

So, no one is aware.

 If any of the other diners notice that the granny is sitting at the table with a face like thunder, loudly nit-picking the menu, they will probably just dismiss her as a cantankerous old bat.  

What they can’t possibly be aware of is the quivering needle on her anxiety gauge climbing towards the red zone because she doesn’t know if any of her ‘safe’ foods will be on the menu. She doesn’t have this vocabulary, though – she was a ‘picky eater’ a ‘fussy’ child, an ‘awkward’ child, a child so unwittingly frustrating to others that her mother used to lock her in the understairs cupboard, and her teacher made her work out in the corridor as she couldn’t bear to have her in the classroom.

The few foods granny will eat are simply the things she ‘likes’, the ones that don’t make her ‘feel ill’. So many of the things other people eat are so utterly revolting that even to think about having to eat them makes her feel panicky and sick. To be honest, she’d rather take a pill, like a spaceman, if she could, than feel and taste food in her mouth three times a day.

She’s just here for the company of her family.

But none of the other diners are aware of this, because old people don’t have autism: it wasn’t a thing back in their day, was it? I mean, it’s a modern epidemic, isn’t it, caused by, I dunno, maybe vaccines or pollution, or bad parenting, right?

And if any of the other diners do happen to hear the dad sniffing, they will probably assume he has a cold or hay fever, because it’s unlikely they will be aware of the intrusive smell of plastic wafting up off the tablecloth that will stop him from enjoying his food and has him wondering how his wife can possibly be telling the truth when she says she can’t smell it.

They will most likely assume that the mum is a poor spouse and mother, or unhappy with her marriage and family if they notice that she has stopped responding to the conversation at her table.

They will not be aware that her mind is completely feral and she’s never been able to stop it wandering at will, as it has done since she was a little child, sitting on her swing in all weathers, needing the repetitive back-and-forth motion to calm the storm of feelings and energies inside; back when her parents called her ‘Dolly Daydream’ and ‘highly strung’ but at school was renowned as a volatile nightmare who ‘could do better’ and must learn to control herself if she wanted to get anywhere in life.

No, none of the other diners are aware that autism* walks among them in that restaurant,

or at their workplace,

or in the house next door,

because sometimes autism hides in plain sight.

*and other neurodivergence.

Conscience, Pricked.

At the end of February I received an invitation to book my first dose of the Covid vaccination.

My immediate reaction was to feel guilty.

Guilty that I would be vaccinated before my husband, daughter and eldest son, who all have asthma, and who all fare very badly with any type of respiratory infection.

Guilty that I would get my jab before friends of the same age who wouldn’t get their invite for probably another couple of months, despite us all being in the age bracket where the risk of serious illness and death from Covid begins to rise.

Questions were asked in the family: ‘Why is she getting it now? There’s nothing wrong with her’.

It’s true, I am usually fit and healthy.

The reason I got invited to book a jab was because I am the primary carer for a disabled person — my son, Freddie.

But still I felt guilty. I felt like I was queue jumping.

Then I developed a throbbing cellulitis infection in my right hand: the skin was hot, bright red and tight, the tissues so swollen that I couldn’t bend my fingers.

I couldn’t grip a toothbrush, a knife, a button, or a pen, I struggled to open tins, jars and packets, and even moderately warm water felt scalding hot to my poor ravaged hand.

Suddenly there was a whole host of small everyday tasks that I just couldn’t do – all the little fiddly aspects of personal hygiene, dressing, and food preparation that, thanks to hypotonia and hypermobility, Freddie needs help with.

Luckily it happened before he went back to school – I would have struggled to push him in a wheelchair.

Luckily, also, the infection was at its worst over the weekend, so there were other people available that I could call on to help him.

I simply had to tell them what help he needed – because one of the things Freddie most needs help with is communication and, in that respect, no one can help him as well as I can, because no one knows him, his speech, gestures, and behaviour, as well as I do.

A course of antibiotics soon sorted out the cellulitis, and it ended up being no more than an annoying inconvenience for a few days (although I still can’t bend my right index finger as fully as my left).

But the experience did bring home to me the fact that I care for someone who cannot manage without my help, whose health, wellbeing, and welfare would suffer if I were to become seriously ill, incapacitated, or dead.

I no longer feel guilty.

I was offered the jab for his sake, not for mine, and I have taken it, primarily to protect his health and wellbeing.

WDSD 2021: The Problem with Awareness Days

March 21st is World Down Syndrome Day.

In the US, they also have a whole month, October, dedicated to raising awareness of Down Syndrome (or Down’s Syndrome, as we call it over here).

But do we really need to ‘raise awareness’ of Down’s Syndrome?

After all, it’s hardly a rare or novel condition – it has existed as long as the human genome, and occurs all over the world, in all sections of the human population.

Surely everybody already knows about Down’s Syndrome?

Certainly, people seem easily able to recognise the outward features of Down’s Syndrome.

In public places like shops, libraries, and hotel dining rooms, strangers see them in my son and are instantly aware that he has Down’s Syndrome.

I know because they make comments like:

‘Bless! They’re always happy, aren’t they?’

‘Oh, we’ve got one of them in our street.’

Because what they see when they look at him is not a boy cropped blond hair and skinny jeans who happens to have Down’s Syndrome – they stop seeing him as an individual as soon as they clock his eyes and the outline of his neck.

Received wisdom gets in the way of true vision — what they see is an outdated stereotype of the condition, a cardboard cut-out with a bowl haircut, ill-fitting, dowdy clothes and the vacant gaze of a person denied education, a family life and stimulating, purposeful activity.

What they see is a caricature of the institutional past.

Clearly, then, we DO need more awareness – awareness of the facts about Down’s Syndrome, and of the reality of life for people with Down’s Syndrome in the 21st Century.

That is why, on March 21st every year, we take the opportunity to celebrate people with Down’s Syndrome, and all the wonderful qualities they bring to the world – because that is the best way to call the world’s attention to just what people with Down’s Syndrome can achieve, and what fulfilling, well-rounded lives they can have, when given the opportunity.

Or, at least, that is what many in the ‘Down’s Syndrome community’ do.

Me? I tend to go a little quiet, hang back — because, for all it’s positive, celebratory tone, World Down’s Syndrome Day – any Down’s Syndrome Awareness day or month, leaves me feeling a little hollow, deflated.

It doesn’t seem to matter how many facts we share, how much positive awareness of the realities of our lives we share, no matter how many parent advocates have been doing exactly this for decades before us, there is always the sense that the general public never quite embrace all of this as the truth.

It’s like they have a desperate need to cling to their old ideas.

Whatever you say, it’s like there is always a looming ‘but’ hanging in the air.

‘But’ may only have three letters but it is a very big word. It contains a whole world of, often unspoken, prejudices and fears.

‘But they’re not all like that.’

‘But I couldn’t cope.’

‘But I don’t want that kind of life.’

In other words, ‘that’s all very well for you, BUT not for me’.

And that brings us to the crux of the problem with awareness days.

There is something that we need far more than awareness, something that no amount of positive awareness seems able to bring – acceptance.

By acceptance I don’t mean simply accepting that people with Down’s Syndrome exist or accepting the fact that people with Down’s syndrome can have good quality of life or can achieve many of the things that their mainstream peers can.

I mean true acceptance.

True acceptance means accepting that people with Down’s Syndrome are your equals in human dignity and human rights.

It means accepting that people with Down’s syndrome have a RIGHT to exist and a RIGHT TO LIFE, the same automatic right to life that you and I enjoy.

It means understanding that it is unethical, morally reprehensible, and just plain WRONG for Down’s Syndrome to be targeted by (and be touted as the poster-child for) a publicly-funded healthcare initiative whose mission is to deliberately seek out Down’s Syndrome in the womb solely in order to offer parents the chance the abort the foetus.

An initiative which provides a recognised pathway of care for those who opt for termination but no equivalent care pathway for those who do not.

True acceptance means understanding that this is a fact and not a matter for debate.

Wheely Pampered

‘Ooh! I see you’re pampering him again.’

It’s a good job I was looking down, tucking a blanket around Freddie’s legs as he sat in his wheelchair, because the WTAF moment I experienced was written all over my face.

I could feel it.

I couldn’t quite believe she’s said it again – I’d explained about hypermobility and hypertonia the previous week.

It was a grey and drizzly Tuesday afternoon, and I was rushing to get Freddie from school to his swimming lesson, half-an-hour’s walk away.

Apart from being an important life skill, swimming has also proved to be beneficial for Freddie’s sense of balance.

But to ask him to walk for thirty minutes at the end of the school day and then swim would be asking too much of his body, so I would always bring the chair on Tuesdays, so I could push him there while he ate a snack, keeping warm under a blanket if necessary.

Maybe it was the addition of the blanket that had rattled her cage: we hadn’t needed one the week before, so I’d had no reason to explain that Freddie finds it difficult to regulate his own body temperature – a thing some people with Down’s Syndrome experience.

It didn’t occur to me at the time to ask if she thought that perhaps allowing my son to get wet and hypothermic would teach his body to govern its own temperature better, or perhaps that she too was pampering her child by putting them on reins so that they couldn’t run into the road – surely a little altercation with a Ford Fiesta would soon teach them to have a sense of danger.

It didn’t occur to me to say such a thing because her child clearly needs that extra help to keep them safe.

Giving a person what they need to keep them safe and well is NOT pampering them, even if the things they need are different to the things most other people need.

I am used to being on the receiving end of this kind of nonsense from random members of the public, but to hear it from another mum of a child with additional needs was especially galling.

I would’ve thought that she, of all people, would have understood that I cannot parent the extra chromosome out of my child any more than she can parent her child’s condition out of them.

We must simply do whatever we can to help our kids function in a world that is not organized with people like them in mind.

I wonder – would she have thought I was pampering him if I had bundled him into a nice, heated car for the journey to the pool? I doubt it.

Ps and Qs

Growing up in the 1980s, I went to a Comprehensive school that was, to put it bluntly, feral. I was one of the library monitors, and so got to spend lunchtimes away from the war-zone of the yard, sheltering among the bookshelves. Many of the books in there were leftovers from the school’s former days of glory, when it was a Grammar School for Young Ladies.

Amongst this treasure trove of relics from the 1930s, 40s and 50s I found several books on etiquette, crisply worded hardbacks detailing the rules of good manners, behaviour and communication governing every conceivable situation a person could find themselves in (including when fast asleep in the privacy of your own bedroom. Did you know it’s rude to sleep with your mouth open? I can’t remember now if it said you should tie your gob shut like a corpse or not).

Well, it detailed almost every situation.

Nowhere amongst those starchy pages of instructions on how to address Archbishops, reigning Monarchs, tradesmen, and your fellow WI members did it once mention how to behave when meeting a Disabled person. Perhaps it never occurred to the authors that there was any need, after all, weren’t they all living in institutions or confined to their sick beds at home? Or perhaps, more reasonably, it was self-evident that people should simply treat them with the same tact, courtesy and consideration as they would any other of their neighbours, colleagues, fellow citizens?

It never occurred to me to notice this omission at the time – I was too young and callow, but a recent encounter while out walking in the woods with Freddie and my husband brought it to mind. If the behaviour of this couple, who, no doubt, consider themselves to be well-behaved, well-mannered and polite people, was typical of what is considered acceptable etiquette when meeting a Disabled person, then how would these books have worded the instructions that informed their behaviour (and that of others who act similarly – this encounter was not a once-in-a-lifetime incident)?

It would probably go something like this (it should be noted that my tongue is very firmly in my cheek here):

Chapter 35: Encounters with the Handicapped and Afflicted

1.  Imagine one is abroad for a relaxing stroll with one’s spouse in some bosky dell, when one espies a family approaching from the opposite direction. As they draw near it becomes apparent to you that the child of the family is afflicted by some malady as evidenced by the wearing of iron bars affixed to the legs by an arrangement of stout leather straps. As a meeting of the ways with these unfortunate people is now inevitable, what is the correct course of action to take? Under no circumstances should one make eye contact. This might result in their curse or misfortune being transferred to you. It is, however, perfectly acceptable to stare at the strange devices on the child’s legs.

2.  As you draw level with them (and still being careful to avoid eye contact) one should turn to one’s spouse and ask in a clear, well enunciated voice: ‘What are those things? Do they straighten the legs?’ The child himself is probably deaf and almost certainly mentally defective and will not understand your words at all, but the parents will feel flattered that you have taken an interest in him.

Seriously mate, if you meet us again, anywhere at all, next time just nod and smile, and don’t mention the legs, because I’ll tell you one thing for free about those devices – they don’t render him, or us, deaf. So, no matter whether your comments are directed at us, or are simply just about us, keep them to yourself and walk on by.

Go home and ask Dr. Google.

Some people say they wish others would ask questions about their children’s disability, they would welcome it as a chance to educate. I can’t imagine any situation more awkward than marching up to a stranger and asking ‘So, why does your kid wear those things on his legs?’

I don’t welcome random questions from strangers — my son doesn’t need to have his differences commented on in public. As far as he is concerned wearing calipers is no different to wearing glasses – they’re just a thing he needs to help make life easier. He is blissfully unaware that they make him an object of curiosity for others. And you, as an abled person, do not have an automatic right to have your curiosity satisfied at the expense of my son’s confidence and comfort.


Local authority school transport is not granted according to a child’s disability, but according to the distance they have to travel to get from home to the nearest school that is appropriate for their needs.

Freddie’s new High school is just over two miles away from our house, so we don’t qualify. But that shouldn’t be a problem, should it – I mean, in this day and age, who doesn’t have access to a vehicle?

Well, me, for a start. I work from home, so I couldn’t justify the expense of running a car even if I could drive one. Which I can’t. I’ve been on a provisional licence for thirty years. My first driving instructor threatened to take the headrest off my seat and smack me across the back of my skull every time I made a mistake (he was a friend of my husband as well as my instructor). Subsequent ones have worn fixed grins and plastic pants. I now see it as my civic duty to stay off the road rather than wantonly endanger innocent members of the public with my spectacularly incompetent driving. Somebody once commented to me that being unable to drive was ‘tantamount to being disabled’. When I gave them my honest and heartfelt response to this, they got a bit upset.

Apparently, I’m an a***hole.

Never mind, it’s a nice walk to the school. Or at least it is for me. Freddie can’t actually walk that far, even if accompanied by an adult, due to hypotonia (which makes walking inefficient and, therefore, more tiring) and severe joint hypermobility in his ankles that causes pain and fatigue during movement and in the long term can lead to the development of osteoarthritis and other musculoskeletal conditions.

He wears orthotic devices to help stabilize the joint, but they are not the most comfortable things to walk in – with tight straps at the ankle and mid-calf. Once Freddie starts to become uncomfortable, whether due to the discomfort of wearing leg braces or to the pain and fatigue that comes with hypermobility, he quickly gets grumpy and frustrated, which leads, inevitably, to him refusing to cooperate or move a step further in any direction.

The solution – buy a lightweight wheelchair. Freddie and I set off each morning on foot, pushing the chair between us. We walk about halfway like this, which means Freddie gets some exercise, which is good for his general wellbeing, then, when the fatigue and achiness start getting a bit too much, he hops in the chair and I push him the rest of the way. It suits us even if it causes a few raised eyebrows in town, when a child who can apparently walk is allowed to get into a wheelchair.

Freddie’s school is located in a very nice, leafy suburb inhabited largely by members of the professions (the only ones who can afford to live here), a few hundred yards away from a mainstream primary. Placed at strategic points around the two entrances to the primary school are several fluorescent yellow A boards urging parents to ‘Think Before You Park’ and to ‘Respect Our Neighbours’ and ‘Think Child Safety’.

By and large, parents parking their cars near the school obey these signs diligently, allowing plenty of room for the vehicles of local residents to pass easily along the road – by parking as far over on the pavement as possible, leaving just enough room for children and parents on foot to squeeze past along the tree-lined grass verges.

Am I the a***hole here, for resenting how their consideration for others completely excludes my child and me, how it fails utterly to respect our needs or my child’s safety?

Am I the a***hole for wanting to bang on their windows as they watch me impassively, engines running, as I struggle to manoeuvre the wheelchair in between their car and a thumping great tree whose gnarled old roots have rutted and buckled grass and concrete alike causing our wheels to get stuck in the fissures, or jounce suddenly sideways?

Am I the a***hole for mouthing swear-words at them behind my mask because, day after day, they are parked in exactly the same spot again, even though, day after day, they sit and watch me as, unable to get past them on the pavement, I have to push my child carefully out into a road where I cannot easily see any traffic coming towards me?

Society is unequivocal in its answer.


Yes, I AM the a***hole for expecting others to spend time and energy considering the needs of those who are, after all, ‘only’ a minority.

Yes, I AM the a***hole for expecting my child, and others like him, to be given ‘special privileges’ like access and safety (which other people take for granted as an automatic right).

Yes, for openly voicing a complaint, I am a bitter and twisted a***hole soured by ‘misfortune’; and if I should ever dare to point out to some conveniently conventional citizen that they too could be just one illness or accident away from becoming a member of the Disabled minority whose needs they see no reason to consider, then I am the biggest, nastiest, most evil a***hole of all, for wishing it on them.