It may sound like Pie in the Sky to believe that a careful choice of words could really bring about social change – but I for one think it’s worth a shot.

Anything to bring a more accepting, more positive, world for our children.

Ultimately, perceptions of disability CAN affect public policy: imagine if your local council’s Cabinet Member for Children were to describe disabled children as ‘having no future’– you can guess which kinds of service would suffer if budget cuts were required.

Language is a free resource that we all use every day, so it would cost nothing to try – except perhaps some mental effort, because, as I discovered the terminology concerning disability is a contentious and surprisingly political issue.

Disability is often more of a civil rights matter than a medical one.

It is an issue of semantics, also, since (as mentioned above), language both reflects and influences how people think, and how they react.

The area is far more of a minefield than I had imagined.

The most pre-eminent guidelines that exist for writing about people with disabilities is to use ‘Person-First’ or ‘People First’ language: that is, to place the emphasis on the person, who happens to be living with the disability, rather than on the disability itself, thus avoiding defining the person by their impairment.

That is what I have always tried to do because I thought it was the right thing.

However, as I have now discovered, many self-advocates in the British Disability civil rights movement reject the use of Person-First language. Why?

In her article Person-First Language and Ableism, Amy Sequenzia sets out the reasons why she, and many others, object to its use.

She argues that the Person-First language concept is ableist because:

– It was co-opted by the non-disabled who believe that they are the authorities in what Disabled people should say and how they should identify themselves.

– It tells us that we should ‘see the person, not the disability’ – but if you see the person and not the disability, then you are only getting half the picture; you are ignoring a very important part of that person’s experience and identity.

– It helps the stigmatization of Disabled people, because instead of ‘seeing’ them, society ignores them, and in doing so denies the political dimension of their identity, making them, politically, voiceless.

– By demanding the use of Person-First language when it has been rejected by Disabled people, society is making the issue all about their choices instead of respecting the choices and opinions of Disabled people, effectively silencing them and implying that they are non-persons who cannot, or are not capable of, defining themselves.

*Note: her use of the capitalised D in Disability is something advocated by many in the civil rights movement to emphasise the political connotations of the word.

So, if we’re not supposed to use ‘person-first’ language after all, what should we use instead?

Many in the British civil rights movement advocate ‘indentity-first’ language, which has its origins in a new school of thought emerged from the disabled people’s civil rights movement in the mid-1970s, known as the ‘Social Model,’ or ‘Barriers Approach’ (Union of Physically Impaired Against Segregation, 1976; Oliver, 1983).

In the ‘Social Model’ disability is redefined as pertaining to the disabling effects of society rather than the functioning of a person’s mind, body, or senses; a disabled person is defined as being a person with impairments who is disabled by socially constructed barriers.

Whereas the Medical Model confuses disability with illness, looks for medical solutions, and views the difficulties experienced by a disabled person as a ‘problem’, the Social Model views them as an expression of a need – a need which society has failed to meet.

The British civil rights movement rejects the term ‘people with disabilities’ (although it is accepted by those in the US) because they believe that the term inherently implies that the disabling effect rests with the individual rather than with society; it also denies the political dimension of the ‘disability identity’.

They maintain that the word ‘disability’ used in this context refers to a person’s medical condition, and therefore confuses disability with impairment.

Disability itself is not the, ‘problem’, the real problem lies in the attitudinal and environmental barriers that exist in society:

‘Physical difference, impairment or functional limitation is not disability. Instead, disability results from the constraints that the dominant culture consciously or unconsciously places upon people who physically, intellectually, or psychologically differ from some arbitrarily defined ‘normal’.’ (Russell L. Johnson, Health and Disability)

So, in practice, what language is acceptable to use and what is not?

One important consideration is the origin and hidden implications of a particular word or phrase.

Many terms once in common we would now regard as unacceptable, yet other people wonder what we’re ‘making such a fuss about’. These include:

– Emotive terms such as ‘afflicted’, ‘restricted’, ‘stricken’, ‘sufferer’, ‘unfortunate’, and ‘victim’. These are unacceptable as they reflect negative reactions to a disabled person.

– The phrases ‘wheelchair-bound’ or ‘confined to a wheelchair’, as both are emotive and inaccurate, since wheelchairs are pieces of equipment that empower rather than restrict the user.

– Phrases that dehumanise and objectify, or deny individuality, such as ‘the blind’, ‘the deaf’, ‘the disabled’, and so on. These are regarded as oppressive by the civil rights movement.

Acceptable alternatives include ‘blind people’, ‘deaf people’, ‘disabled people’.

– The term ‘able-bodied’, used to describe those who are not disabled.

This is considered unacceptable because it ignores the fact that some disabled people, for example, those with learning difficulties, may also be ‘able-bodied’.

The term non-disabled should be used instead.

– Disabled toilet/ entrance. It’s an accessible toilet/entrance.

– Phrases that portray impairments as an obstacle to be overcome, for example: ‘physically/ mentally challenged’.

Such terminology ignores the societal barriers that disable people by placing the emphasis on the impairments themselves as the ‘challenging factor’.

– Terms that refer to people solely by their impairment, for instance: ‘a dyslexic’, ‘an epileptic’, ‘she’s a Down’s/ Down’s Syndrome’ or ‘he’s Cerebral Palsy’.

Wherever it is necessary to refer to an individual’s impairment, then it should be phrased as ‘a person with …,’ or ‘a person who has…’

– Invalid. The use of the word in this context originated from the military description of someone not fit for service as ‘not-valid’.

Its use perpetuates concepts of the disabled as non-functional members of society, and therefore less than human.

You will note that all of these phrases are still in common usage in the mainstream media.

Now that I am aware of this, it makes my blood boil.

If I still read newspapers in print form I’m sure that every copy I picked up would spontaneously combust within minutes.

There are a couple of phrases, though, that I know I am guilty of using, because I cannot think of an easily-written, easily-read alternative (note to self: must try harder). These are:

– ‘Special Needs’ – this term was coined as an attempt to de-medicalise the labelling of disabled children, in the belief that a label based instead on educational need would be less negative.

However, this still stigmatizes and excludes the child, by promoting the assumption that such children required segregated provision.

The ‘needs’ referred to in this phrase are usually determined by professional assessment, and may even be a product of the environment into which the child has been placed, school, for example.

In a different, more supportive environment those needs may not exist, or may not be viewed as abnormal.

– ‘People with learning disabilities’. This term originated in the health service. It was rejected by the civil rights movement because, like ‘people with disabilities’ it denies the social construction of disability.

People First, the largest user-led organisation of people with learning difficulties in the UK decided against its use on the grounds that: ‘If we talk about disabilities, it makes it sound as though we can’t improve. Everybody with a learning difficulty can improve, even if it is only a little’ (People First 1992).

– Carer: as this implies that disabled people need to be looked after and can never achieve any degree of independence; it is patronizing and conceals the fact that many of the problems encountered by disabled people are a result of society’s failure to address their needs.

This is where I’m left scratching my head, because how do I replace the phrases ‘Special Needs’ and ‘carer’ in my writing?

‘Additional Needs’? ‘Impairments’? ‘guardian’?, ‘companion’? ‘key-worker’?

Answers on a postcard please.

There are certain criteria that we can use to help us decide whether a term likely to be acceptable.

The writer should consider whether the word or phrase:

– Is based on the social model of disability, locating the root of disablement with society.

– Has arisen from self-definition or self-identification.

– Is likely to affect the perception of other groups (as in the case of ‘carer’).

– Has discrimination, paternalism or pathos inherent or implied in it.

There are those who would say ‘this is political correctness gone mad’, but I think if there are Disabled people out there telling me that there are certain words or phrases that I shouldn’t use for one reason or another, then I should listen and do my best to respect their wishes.

I acknowledge, though, that I will sometimes inadvertently get it wrong.

Many bloggers write simply to ‘get things off their off their chest’, as a form of catharsis or self-therapy, and would not define themselves as activists.

I would include myself in this group of people.

But there is a little bit of me (OK, hands up, it’s my ego, and some would argue that it’s not so little) that really relishes the idea that just by doing something I enjoy I could, with a few careful tweaks, be doing my bit to influence the world for the better, for children like ours in the future.

But, though Down’s Syndrome brings many things to family life, it sadly does not bring immortality for parents and carers.

So I have to settle for remaining as healthy and active as I can for as long as possible.

Since a dip in the local fountain offers, not eternal youth, but only hypothermia and several nasty diseases, and virgin’s blood is in short supply these days, that means I have to resort to exercise.

Gym membership comes under the heading ‘complete waste of money’ in our household budget, and, to be honest, it is very likely that, left unsupervised in a room full of interesting-looking equipment, I would do some damage – if not to the equipment (what-the-hey, it’s insured) then to myself (I’m not – you can’t get the spare parts).

I try to make sure that I walk for at least thirty minutes, several days each week.

This is never pleasure walking, though: it always encompasses whatever errands I need to run that day.

While it’s a great way to burn a few calories and get the heart pumping (and it’s free) it doesn’t feel like enough.

So I recently decided to take up swimming.

It’s a great all-around workout that’s gentle on the joints and is also really calm and relaxing.

I am lucky enough to be able to make it to a public swim session on Thursday lunchtimes while Freddie is at school, so I get to actually swim, rather than just float around supervising kids.

Even going just once a week has got to be better than not going at all, right?

I’ve never been swimming on my own before, always with friends or my husband and children, so I felt a bit nervous the first time.

Two older ladies saw me hovering on the side, wondering if I’d got the right day because there was a notice up by the main pool declaring that it was reserved for swimming lessons.

They smiled so I asked them about the notice.

‘It’s only five to, they said, ‘they’ll take it down before twelve. We’re waiting for the training pool to open – it’s chilly in the big one.’

Perhaps the temperature in the main pool is a design feature intended to keep people moving.

But it was so long since I’d done ‘proper’ swimming that I had to stop every so often and cling to the side for a rest, and was acutely conscious that I might be getting in the way of more able swimmers.

I managed a few lengths in this bitty fashion, and was struggling back down to the shallow end debating how long I would have to stay in the pool to get value for money, when I saw one of the ladies I’d spoken to waving at me and beckoning from the entrance to the training pool, which was now open.

I couldn’t quite hear what she was saying, so I got out of the water and went over.

‘Why don’t you come in here, Duck, it’s warmer,’ she said, and added, in a conspiratorial tone, ‘because it’s for the over-50s’.

Cue an awkward moment of silence.

Over 50s?

Do I really look ‘over 50’?

Perhaps my puffing progress up and down the pool had been more laboured than I imagined.

Or perhaps it was time to admit that there is less than a year until I reach that milestone, and I’d be flattering myself to imagine that the years don’t show.

And it was warmer over here, and the pool smaller and shallower.

I would swim much more confidently knowing that I could stop anywhere and my feet would still reach the bottom.

Swallowing my pride was more palatable than swallowing freezing cold, chlorinated water every time I started to sink, so I got in.

As it turned out the lady was mistaken – it isn’t only the over-50s who use the training pool on a Thursday lunchtime.

I’m glad she was mistaken, she was meant to make that mistake: because if I’d stayed in the main pool I wouldn’t have seen four younger people gradually filter into the training pool that afternoon.

Four young adults with Down’s  Syndrome.

I am acquainted with many people who have children with Down’s Syndrome, but not many adults who have it.

It is not easy to imagine what Freddie will be like as an adult, what his life will be like, and I am grateful for any chink of light that can show us a glimpse of his future.

The first person, a young man, arrived with a companion, who might have been his Dad, or maybe a carer, I couldn’t tell – but the young man swam independently.

Then another young man and a young woman arrived. They too swam independently, and well – the young woman preferring to swim underwater, a graceful floral blur beneath the surface.

The fourth, a non-swimmer judging by her inflatable arm-bands, arrived with her carer, or perhaps we will call her a companion because she hugged the lady with such great delight when she managed to swim a few strokes unaided at the end of the session.

As I pootled up and down the pool it struck me how many times life has given me the clues and hints that I needed to see in order to believe that it is possible to raise a child with Down’s syndrome, and for that child to enjoy good quality of life: how many times life has gone out of its way to show me that I was always meant to be the mother of a child with Down’s Syndrome.

There was that day, years ago when a man with Down’s syndrome who used to work in my local McDonalds cleared my tray for me when he saw my hands were full.

The day when I was dashing around Sainsbury’s failing to find the jam, so I asked a member of staff who was stacking shelves and noticed only when she turned around to answer that she had Down’s.

Then there was the young man I used to see a couple of times a week on my way back from the school run, waiting outside the pub for his bus to the Day Centre; he’d greet me with a cheery ‘Hello’, and check the time with me if his bus was late.

And the little boy in my daughter’s nursery class – how glad I am that when she asked me why that little boy still wore nappies and still rode in a buggy I didn’t mention Down’s syndrome, I didn’t use that horrible phrase ‘something wrong’ (as has been subsequently used to my face); I simply said that some children take longer than others to learn new things, or for their muscles to get strong enough for them to walk for longer distances.

I don’t know how those words got into my mouth, I am not usually a tactful person, but I am so glad they did.

Years later, when my doctor talked to me about my ‘1-in-12 risk’ these were the images that came into my mind – real people, with real lives, whose everyday paths had crossed with mine. It would be untrue to say I was completely unafraid, but I was resolute – I knew it was perfectly possible to raise a child with Down’s Syndrome because I had seen empirical evidence of this with my own eyes.

I was meant to have all these experiences because Freddie’s life was meant to be. I was meant to be his mother. Our family life was meant to be this way.

It didn’t stop with Freddie’s birth, though. After a sleepless and profoundly emotional first night in our private cubicle at the hospital, I flicked on the breakfast news programme, looking for a sense of normality, a sign that the world was still turning on the same axis.

No sooner had the screen blared into life than the presenter announced that coming up later would be a report into newly released figures that suggested more people than ever, given a prenatal diagnosis of Down’s Syndrome, were choosing to continue with the pregnancy.

I don’t know how well the figures correlated with on-the-ground reality (you know the saying ‘Lies, damn lies, and statistics), but it was what I needed to hear, precisely when I needed to hear it.

Later my husband walked into the room bearing a newspaper – not something he would normally buy. He hadn’t opened the paper, so hadn’t seen the centre-spread article: ‘Loving Eddie Was Easy’, written by the father of a boy with Down’s Syndrome.

The timing could not have been more perfect.

It’s almost as though it was meant to be.

The internet offers an unparalleled opportunity to reach vast numbers of users – potentially many thousands of people each day, and this is, perhaps, the main reason for the surge in popularity of blogs and blogging among businesses and other organizations.

Any subject that you can think of will probably have been written about by somebody, somewhere, in a blog.

Why do people write blogs?

Is it to raise awareness of the things that concern them?

Is it to influence the opinions of others?

Do they do it as a form of catharsis to, ‘get things off their chest’?

These are, perhaps, the most common reasons for blogging, especially for bloggers like us – the parents and relatives of disabled children (or children with disabilities: you’ll see why I’ve added this in part two).

But can blogging ever be anything more than a self-indulgent exercise?

I would argue that yes, it can.

Popular bloggers can wield great power as influencers, and have a tangible impact on the realms of business, politics and society.

For example: a Russian political blogger was named by The Wall Street Journal as ‘the man Vladimir Putin fears most’ (March 2012), after his nickname for the ruling United Russia Party, ‘the Party of Crooks and Thieves’ was adopted by anti-regime protestors.

It was also the influence of bloggers in the US that created the political crisis in 2002 which forced Senate Majority Leader, Trent Lott, to step down.

Blogs are much harder for the state to control than either print, or broadcast, media, and so authoritarian and totalitarian regimes will often either seek to suppress them, or to punish those who maintain them: in Myanmar a blogger was sentenced to twenty years in prison for posting a cartoon criticising the Head of State.

But can we, as humble ‘Special Needs’ parents (I probably should stop using that phrase: more about that in part 2 also), really do anything to change the world?

Again, I would argue that yes, we can.

For a start, we can be instrumental in raising genuine awareness among the general population – not only of rare conditions, or of the fact that some children experience profound impairments or difficulties without ever getting a formal diagnosis (Syndromes Without A Name or SWAN), but also of the more common, and commonly misunderstood, conditions/impairments.

I write about parenting a child with Down’s Syndrome, and have on occasion been asked: ‘Why bother? Everybody’s already aware of Down’s Syndrome.’

But, though most people can recognise the facial features consistent with Down’s Syndrome, and think they know what it is, it transpires that their mind is full of outdated stereotypes and misconceptions, and they have no real understanding of it at all.

They are surprised when they are made aware of the true nature of the challenges we face, and of how much our children can achieve when given the right support.

As bloggers we have the power to challenge stereotype and misunderstanding, to demystify and demythologise life with a disability, by writing about, and sharing, our reality.

There is another way in which I believe we parent bloggers can influence the world around us, and that is by demonstrating a careful and constructive use of language.

But surely a blogger should write freely, as they speak, in a voice that is authentically their own, without having to worry about the niceties of grammar? Well, yes and no.

Of course any blogger’s writing should reflect their own authentically individual viewpoint and experience, and the finer points of grammar aren’t really that important so long as a person is able to get their point across, but language, as in choice of words, is crucially important when writing about disability.

The terminology concerning disability is a contentious and surprisingly political issue.

Disability is often more of a civil rights matter than a medical one.

It is an issue of semantics, also – language both reflects and influences how people think, and how they react to situations, and to other individuals.

The traditional view of disability locates the ‘problem’ with the individual, and asserts that it is the disabled person’s medical condition that is the root cause of their exclusion from society.

This is the ‘Medical Model’ of disability.

It confuses disability with illness, and looks for medical solutions – potential cures or treatments, or the eradication of the ‘problem’ by other means, such as pre-natal screening, and termination of foetuses found to have certain congenital conditions – rather than societal change to make life better for those with impairments/disabilities.

Much of the terminology it uses is patriarchal in nature, implying that disabled people need to be looked after, and to have things done for them and to them: and in so doing it denies them empowerment.

The persistent use of such terminology perpetuates negative and inaccurate stereotypes.

This in turn leads to misinformed and inappropriate attitudes in society generally, to social exclusion, a clichéd and negative media image, inadequate legislation and social policies, and inaccessible buildings.

In a society so heavily influenced by the media, the press can have an enormous impact on society’s knowledge and attitudes, and on public policies regarding individuals with impairments.

Yet, despite more than forty years of disability civil rights activism, and the opposing calls for the use of Person-First language or the Identity-First language preferred by the civil rights movement, many journalists writing in the mainstream press continue to use the dehumanising, disenfranchising and paternalistic terminology of the Medical Model.

In January 2016, Sarah Knapton, Science Editor at The Telegraph, described Down’s Syndrome as a ‘debilitating condition’ in an article on pre-natal screening.

She faced a barrage of comment and complaint from members of the Down’s Syndrome community, particularly those active online, keen to point out that, far from being debilitated, those with the condition are able to participate fully in life, enjoying hobbies, participating in sports, achieving in education and, in some cases, able to hold down jobs, and form romantic relationships.

To date she has, I believe, refused to apologise for the term, or admit that it was inaccurate.

But a few days later, as a result of the comments received, the newspaper ran an article by another journalist offering a more positive perspective.

So, language both reflects AND influences how people think and how they react; and the patriarchal phraseology and out-dated, inaccurate descriptors that originate in the traditional ’medical’ view of disability contribute to a negative and invalidating stereotype.

Language, then, is one of the socially constructed barriers that constrains those people who have a physical, intellectual, or psychological impairment.

Therefore, one way in which we can begin to change society’s perception of disability is to change the language we use to talk, and write, about people with impairments.

As I hope the examples given above have shown, bloggers can be great influencers.

Their influence extends beyond the online world into the real world of politics, business and society, and in some instances has been instrumental in bringing about socio-political change.

It is not just their opinions and ideas that their readers or ‘users’ adopt, sometimes the actual words they use are taken up also.

Blogs and other internet sources are rapidly becoming the first choice for those seeking information and news, and in some sectors are overtaking the mainstream media, which is having to change to meet the challenge presented by the online world.

This is where online communication and activism, and blogging such as ours, comes into its own.

As a public platform that can be accessed by anyone, the internet offers a voice to the voiceless, and because of its unprecedented reach, both in terms of user numbers and geographical spread, it allows that voice to be widely heard.

As bloggers ourselves, then, WE have the tools in our hands to bring about change. Our tools are the words we use.

By employing more positively-nuanced language and terminology, that references disability in terms of society rather than the individual, and by rejecting and challenging phrases that dehumanise and devalue, then it is possible, that we may be able to effect change in the way society perceives people who have impairments, we may also cause the traditional press to re-evaluate their presentation of such issues also.

Potentially this could lead to the perpetuation of a positive image of disability and impairment, but as with all social change, if it happens it will be a protracted process.

And I suspect that it is more easily said, than done in practice.

I am generally a happy person, not because I find myself in happy circumstances, but because I choose to be happy.

But, stubbornly positive though I am, even I have my vulnerabilities.

The following post was prompted by a particularly rough weekend, in which the past reared its rose-tinted head and reminded both me and my husband that not only were our lives once completely different, they were once completely separate: that we were once with very different people doing very different things.

At any given time in our lives then either one of us might have faced a sliding-doors moment, in which we could have taken an alternative exit to another future altogether.

I began to wonder whether my husband wished he had gone another way instead.

My husband is a practical man.

He is not particularly sentimental, and not in the least materialistic – he has no interest in acquiring things beyond those which are immediately necessary or useful to fulfilling the basic needs of daily life.

What do you give a man like this as a Father’s Day gift?

There is, perhaps, one thing that he might crave. It’s not an object I could gift-wrap. It’s not something he would ever ask for, or even openly admit to wanting.

I am the only person who could give it to him, and I would, if I had the courage.

I would give him Freedom.

Yes, you heard me right, I would set him free.

I would open the door of the legally-binding cage of marriage, unfasten the cumbersome tether of duty, and let him fly away.

I’d set him free to find the thing all his mates have; the one thing they had as kids that he might have envied; the one thing I can’t give him – the peace-of-mind of a normal, easy, family life.

I’d set him free to find a strong, independent, capable woman.

One with a job title he could be proud of in front of his mates and colleagues: who amazes everyone she knows by finding enough hours in the day to work full-time and manage the house and kids to perfection and chair the school PTFA, and still has the energy to keep herself in shape at the gym.

A woman who is always a fascinating and supportive companion: a woman who makes him laugh and is his best friend, instead of a dead weight around his neck.

I’d set him free to go and find a life where he could go off with his mates to the pub, a gig, or a boys’ weekend, without feeling that he must hurry back to help his wife cope with a child whose delayed development means that he does not understand why he must cooperate when he doesn’t want to, but is so big that his mother can’t lift him when it becomes imperative that he move from A to B.

I’d set him free to find a life where he’d be able to drop his kids on any one of several babysitters at short notice, and go off for a night out, a weekend away or even a child-free holiday.

I’d set him free to be able to relax and enjoy a meal in a restaurant with family and friends and not have to worry that his child, who was the embodiment of charm when he entered the restaurant, will suddenly metamorphose into a spitting, food-throwing fury because of some infinitesimal change in the atmosphere of the room.

I’d set him free to be able to enjoy a kickabout in the park, kite-flying on the field, or a just ramble in the woods without having to worry that his child may suddenly run off, or drop to the floor and refuse to move.

I’d set him free from worry about the future, whether that’s thirty years into the future, when we’re no longer here to look after our son, or thirty minutes hence, when he has to leave the relatively peaceful and orderly world of work and return to whatever is awaiting him at home.

I’d set him free to allow him to observe for himself that I could manage on my own, to prove to him that I could and would find a way around our difficulties, and however unorthodox or ‘creative’ my solutions were, they would work in the long run.

Most of all, I would set him free to see if he would come back.

I know of a lot of people who expend a great deal of time and creative energy trying to bring this happy state of affairs a few steps closer.

But as the parent of a child with Down’s Syndrome, I do sometimes wonder how we can expect the world to be more tolerant of our children’s diversity, when we in the Down’s syndrome ‘community’ seem to have as much trouble as the general population in accepting that not all our children are, or should be, exactly alike.

To give you an example: I once posted a video of Freddie riding a bike, which was something that both doctors and physiotherapists had suggested he would struggle to learn to do.

However, we decided to try, and after a quick demonstration from his big sister, Freddie hopped aboard his new bike and pedalled off down the street with us following after.

I was so delighted I filmed a bit of his ride and posted it on my blog.

Some of the comments I received ripped me to shreds for misrepresenting the capabilities of people with Down’s Syndrome.

This was not from a person who had no real-life experience; it was from the parent of a young adult with Down’s who, this person said, never had been, and never would be, capable of riding a bike.

OK – fair enough, I wouldn’t for one second question that this person was telling the truth when she stated that her child could not ride a bike.

But I fail to see how this fact meant that my video was misrepresenting people with Down’s Syndrome.

My son irrefutably has Down’s Syndrome – there’s no grey areas with that.

It’s not down to an individual clinician’s interpretation of what DS is, either you have it or you don’t: the presence of the extra chromosome must be demonstrated before an official diagnosis is made.

My son was irrefutably riding a bike, a thing with two wheels (plus stabilizers), handlebars and pedals.

As could clearly be seen in the video clip, no one was holding on or pushing, he was propelling himself forwards using the pedals.

So in what way, exactly, was that video misrepresentative?

A similar thing happens if ever publish a blog post that suggests that, as a family, we are generally happy and enjoy good quality of life, or that my son generally enjoys good health.

I find myself accused, in not so many words, of being a liar.

‘Oh, you’re all rainbows and unicorns. I prefer to tell it like it is.’ This is a fairly typical comment.

What is it that makes these people, who have never met me or my child, who have never been to my house, who know nothing about me or my family, assume that I am NOT telling it like it is for me?

When I read someone else’s blog or Facebook post detailing the struggles and negative experiences that they have, their child’s battles with poor health, or with school, or behaviour, and so on, it never crosses my mind to doubt that they are telling it like it is for them.

I would never dream of negating their experience by calling it misrepresentative. I would not try to silence them because their reality is different from mine.

I accept it as fact that some families have a very much harder time than mine do.

Some families do find their experiences reflected in the negative stereotype that the medical profession and the media have laid out for us.

That is the truth – but it is not the whole story of life with Down’s Syndrome.

We accept that in the general population people come with different abilities and aptitudes, differing levels of health and fitness. The same is true of people with Down’s syndrome.

No two sets of parents are exactly alike – they come from different backgrounds, have different attitudes, aptitudes, abilities, and tolerances.

That is why every family dynamic is unique, both within the general population and within the Down’s Syndrome community.

That’s why families like mine, who find that their lives, and their experiences, are very much more positive than they had been led to believe, really do exist.

We are not walking around with ice-cream cornets stuck on our foreheads pretending to be unicorns.

I did not claim that my child could fly, or was riding Pegasus. I said he was riding a bike, and he was riding a bike; I even posted a picture of him riding a sodding bike to prove it.

Our somewhat ‘easier’ experience is equally true, and equally valid, and we have an equal right to talk about it.

No one person, or family, represents the entirety of what it means to live with Down’s Syndrome.

Each one of us makes up a small piece of the picture – but the picture will never be whole unless we are allowed to show all the different pieces.

I have no problem with any mother who breastfeeds her baby in public.

There is one thing that I wish these women wouldn’t get out in public, though:

their judgey-faces when they see a mother bottle-feeding.

Firstly, they are assuming that what is in the bottle is formula.

Secondly, they are making assumptions about the reasons why that mother is bottle-feeding.

I would not argue with the fact that breast milk provides the optimum nutrition for (most) newborn human babies; but somewhere along the way the ardent supporters of the ‘Breast is Best’ campaign have moved away from simply encouraging as many women as possible to breastfeed and pushing for the provision of adequate support for breastfeeding mothers, towards encouraging the judgement and vilification of those who bottle-feed.

Expectant and new mothers are presented with information that magnifies the risks associated with bottle-feeding in the developed world.

It is suggested to them that if they do not breastfeed, their babies will become deficient in certain nutrients which could adversely affect childhood development: advice which completely ignores the fact that formula is supplemented with these nutrients – a bottle-feeding mum is not giving her baby half-a-pint of pasteurised straight out of the fridge, she is using a product engineered to replicate human milk as closely as possible.

I have even come across the suggestion that there may be a link between bottle-feeding and autism.

There is NO scientific evidence to back this up, it’s just scaremongering.

Young mums are bombarded with messages that imply that if they do not breastfeed then they do not want, or are not prepared, to do the best for their child, that they will be letting their child down.

This is no exaggeration. Increasingly, people get their information online, and this is where the ‘breast v. bottle’ debate gets particularly vicious.

The backlash against anyone who dares to try to advocate for bottle-feeding mothers is the most savage, especially if you dare to utter the phrase ‘fed is best’:

‘Non-breastfeeding mothers are selfish. It’s not about you anymore once a baby comes along.’

‘Fed is not best, fed is the minimum. You might as well congratulate a mother on managing to not kill her baby as give her a pat on the back for bottle-feeding.’

I’ve come across dozens of quotes like these online. I’ve even seen formula-feeding described in terms of legalised neglect. Wow.

The more reasonable online articles often suggest that bottle-feeders do not want to hear the health messages about breast-feeding due to guilt about their own ‘failure’ to breast-feed.

By attributing guilt as a motive they validate the idea that bottle-feeding mothers should feel guilty.

Can you imagine the response if anyone tried to make breastfeeding mothers feel guilty about trotting back off to work, breast pump in briefcase, before their babies were weaned, instead of staying at home to ‘look after them properly’?

We’d be told to get out of the dark ages – this is the twenty-first century, accept that mothers have a right and a need to return to work (which indeed they do).

Well, I would say this to the breast-feeding bullies: ‘Come out of the dark ages – this is the twenty-first century, mothers have a right and sometimes a need to bottle-feed.

But the guilt argument does at least acknowledge that many try breast before bottle.

Not quite hard enough, though, apparently, because, as we are often informed a few lines further down the article, only a very small proportion of women are physiologically unable to breastfeed (about 2%).

All we really needed to do was persevere and get some better support.

It’s as if complete inability to lactate were the only valid reason for bottle-feeding. But it isn’t.

For some mothers and babies no amount of support or perseverance would facilitate breast-feeding: because some babies are unable to breast-feed.

That’s right. For diverse medical reasons some babies cannot breast-feed.

Either they cannot suckle effectively (if at all), or they cannot obtain enough calories from breast milk. I know this because it’s something I have personal experience of.

Yes, I know it is sometimes possible to breast-feed a baby with Down’s Syndrome. I was bombarded with that message too. Sometimes it is possible, but not always.

Not that any judgey-faced, hashtag ‘keeponboobin’ mum witnessing me bottle-feeding my baby in a coffee shop would have been able to tell that he had Down’s (unless she came and stared at us rudely for a very long time).

She certainly would not have been able to see the heart defect that meant he quickly became breathless and exhausted, or the problems with his blood that had the same effect.

She would not have known the effect that hypotonia has on the facial muscles used in suckling.

She would not have been aware that being able to satisfy his hunger by sucking on a fast-flow teat, snuggled in his mummy’s arms, was a step up from having mummy poke her hands through the doors of an incubator to administer EBM by naso-gastric tube.

She could not be expected to know how that ‘selfish’ mother had set an alarm to wake her every third hour through the night so that she could express the milk she poured into that tube.

How she continued to do that even once he came home from the hospital, even though he had to be fed every three hours, and took an hour and a half to drink the minimum amount necessary for his wellbeing; leaving only an hour and a half in which she could pump milk for the next feed, do everything else she needed to do to look after her two other children, and to eat, or sleep, herself.

Since there was no convenient dial on his forehead showing energy use per hour, she could be forgiven for not realising how high his calorie needs were in those early days, just to perform the basic functions of life, never mind to grow.

How, despite the endless 24/7 cycle of feeding, pumping, feeding, he continued to lose weight hand over fist, until the paediatrician said enough was enough, there was no way this baby would ever get enough calories from breast milk, he needed to have a prescription-only high-calorie formula if he was to have any chance of thriving.

Ms. Hashtag Keeponboobin would most likely have assumed that I had my own selfish reasons for closing my ears to the health messages about breast-feeding.

Little did she know that I had heard those messages loud and clear, about how much harm I would do to my baby if I allowed him to have formula.

In her self-righteousness there is no way she could form a picture in her mind of the day after our visit to the paediatrician, when this useless mother, having failed her poorly baby at the first hurdle, kissed him for what she believed would be the last time, then pushed him into his father’s arms and ran out of the door, determined to be under the wheels of the first heavy vehicle that came down the road.

Luckily there was hardly any traffic about that day, probably because the weather was appalling.

I was retrieved before I could come to any harm, and eventually persuaded that lack of a mother would be far more detrimental to my child than formula milk.

I would challenge any woman who dared to say in my presence ‘fed is NOT best, fed is the merely the minimal standard’ to stand at the sink scrubbing bottles until her fingers bled and there were painful cracks across her knuckles that wouldn’t heal.

Believe me, nonchalantly sticking your baby on your tit while you watch Eastenders, slurping a cup of tea, seems decidedly minimalistic compared to the work I had to do to ensure my child’s wellbeing.

The truth is that in the developed world in the twenty-first century, bottle-feeding is a perfectly safe alternative to breast-feeding. And sometimes a necessary one.

My son is eight now, and so was weaned a long time ago, but the emotions associated with those early days are still raw.

I don’t want any other mother to ever be made to feel the way I was made to feel.

So, breastfeeding advocates, before you bash out that condemnatory comment or sanctimonious blog post, stop and think – there is more than one reason why a baby may be bottle-fed.

It isn’t always a lifestyle choice, it isn’t always a choice. If you see a woman bottle-feeding in public, before you give her that look, or pass some snidey remark, remember, you don’t have all the facts.

With your nose stuck so far in the air it’s unlikely you could tell a medically-fragile baby from a Chihuahua in a handbag, so if you feel inclined to view that mother with a critical eye, take your judgey-face off to the nearest mirror and have a good, long, look at yourself, and at the real reasons why you feel the need to be so judgemental.