9/1/18 From Positive Parenting to Genocide (in 688 words or less).

Do you know what really hacks me off, pisses me off, fucks me off so badly that it makes me want to punch someone in the face?

The phrase: ‘It’s Political Correctness gone mad.’

I come across it time and time again whenever someone is called out for using offensive ableist slurs like ‘mong’, ‘retard’, ‘window-licker’, and others. Rarely is there an apology or admission of a mistake made, just the petulant whine ‘You can’t say anything these days, it’s Political correctness gone mad’.

Political Correctness is simply a handy title for the concept of having respect for your fellow man.

No doubt you expect that other people will automatically show respect to you, and you’d be offended if they didn’t. Well then, you need to show that same respect to other people. Treat others as you would want them to treat you.

Show some respect for other people — don’t use language that demeans or dehumanises others, or slang words, like the ones above, that started out as derogatory terms for disabled people. If you do so inadvertantly, please apologise and admit your mistake: we all make them from time to time, and they can be a vlauable learning experience.

Have some respect for yourself, and some pride — don’t parade your ignorance and pitiful vocabulary in public. Learn better, kinder words — they speak for your character in the eyes (and ears) of the world.

I know, I’m preaching again, and nobody wants to hear that. But I’m not going to stop, because I believe I’m right, and when I’m right I won’t shut up just for the sake of being liked, of being thought nice. All the niceness in the world won’t do any good if it makes us ignore the bad things.

There’s a page on Facebook that calls itself ‘Positive Parenting: Toddlers and Beyond that has repeatedly used the word ‘spaz’ in its posts, despite many previous complaints about its use, none of which it has made any attempt to address. It has a lot of followers and looks ‘professional’. I won’t post a link to it, I don’t want to drive any traffic to the page if I can avoid it.

Positive Parenting, my arse! Such high-handed disregard for others flies in the face of everything Positive Parenting stands for. Anyone with an attitude like that couldn’t Positively Parent a cockroach, never mind a child.

But it’s only a word, they don’t mean anything by it, they aren’t talking about a disabled person, sticks and stones and all that … honestly, you can’t say anything these days without someone getting offended, it’s Political Correctness gone mad …

NO! If you’ve offended someone the problem lies with YOU for giving offensive, not with them for being the one offended against. And it doesn’t just cause offence, it causes actual harm. Because when you do this, even casually, or in jest, even if it is not aimed directly at a disabled person, you degrade disabled people by turning them into a living insult, a by-word for something inherently despicable or disgusting. This, in turn contributes to, and perpetuates, the negative perceptions of disability in society, and, by a slow, continuous drip-feed effect, leads to disabled people being viewed as something other than human, as ‘less than’, ‘invalid’, and so gradually they are disregarded and ignored, their needs a mystery that the majority population thinks it need not concern itself with. And this, again, by slow, eroding drips, leads to poor public planning, to a lack of services, and accessible buildings and facilities. Ultimately, this leads some in society, who pride themselves on being intellectually superior, rational, scientific beings, to assert that these pitiful sub-humans (as they view them) would be better off dead, and they should, therefore, be subject to eugenic abortion and/or euthanasia.

There is, of course, another word for the targetted extermination of groups of people based on a shared characteristic, but the intellectuals, the influencers, and the policy-makers never use it, because it carries a much more negative connotation than the rational-and-scientific sounding term ‘eugenics’. It is a term associated with criminality and evil: Genocide.

You see, words DO matter.

 

 

 

 

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29/12/17 Happy Hibernation.

I’m going to say this very quietly, otherwise I may come under a hail of heavy missiles from my fellow parents …

We didn’t get up until ten o’clock this morning.

We (that is, Daddy and me) went to a wedding reception last night, leaving Freddie in the care of his big brother and sister, who are almost 21 and 18 respectively. They are both perfectly capable, and legally old enough, to look after him, and he is happy and confident in their care. In fact, big sister got him tucked up in bed and asleep before we left the house. We had a very pleasant evening; I danced for a whole ten minutes before my knees began to complain (with somebody young enough to be my son, but unfortunately Daddy didn’t notice – he was too busy with his duties as an elder, advising the Groom that he must now knock out a couple of kids as soon as possible, because to carry on living a carefree existence now that he has joined the ranks of married men simply wouldn’t be fair to all the others). We got home just after eleven, bearing milk and bread we had picked up on the way back (marital responsibility is never really very far away).

Freddie woke up at about 7.30. this morning. I made sure his stool and toilet seat were in place, fetched him a drink while he went to the loo, then got back into bed. He came in for a snuggle, and then amused himself quite happily while we snoozed (whether or not we will be happy with the way he chose to amuse himself remains to be seen, however — we’ve come down to find faces drawn on lampshades before …)

In our house we are close to declaring Christmas a Festival of Hibernation. Daddy usually has the whole week off work, but you won’t find us taking rictus-grinned selfies of ourselves engaging in regulation ‘Quality Family Time’, festively hurling missiles of compacted ice at each other in the local park (though it is much more tempting to visit when you can’t see the dog poo for the snow): or savouring the luxury of a crowded restaurant where your drinks come diluted with waitresses’ tears, because the kitchens can’t get the orders out fast enough: or enjoying the pay-through-the-nose priviledge of listening to a hundred or so other kids screaming and tantrumming at the Panto, while Freddie looks on, clearly mystified, perhaps wondering in his head if that’s how people are supposed to behave when they’re in a theatre. I know, I know, you shouldn’t complain about other people’s children, after all, kids will be kids, and they’re only young, and so on … unless it’s obvious that your child has a disability of some kind: then everyone and anyone has the perfect right to complain about your child, loudly, in your hearing, or even in your face, apparently. I say ‘apparently’ because I know many, many parents who have experienced this, but I never have myself. This is not because I am especially competant or especially blessed in some way, but more likely because I have been cursed with a case of Resting Bitch Face so bad it would make Medusa jealous. Nobody who didn’t have an active death-wish would bloody dare. Maybe this face is a blessing after all.

It’s not that we can’t go out and enjoy Quality Family Time, but because, at this time of year, we can’t be arsed. We really do just nestle down in the house for a whole week, enjoying the comforts of soft pyjamas, fleecy blankets, hot chocolate, films, books, and FOOD. I wish we could do that right through till March, to be honest. I’m sure I have evolved from some sort of hibernating species.

Actually, there was a small flurry of fully-dressed activity on Boxing Day (was that Tuesday?). Daddy put on his DIY clothes and built a Lego Triceratops with Freddie (well, you can never be quite sure how these things are going to turn out – even the most innocuous craft-type activity with children can easily result in the need to repaint walls). Lego seems to be very good for promoting the development of fine motor skills and concentration. In my day, though, we didn’t have all these fancy sets designed to build something specific, you just got a big tub of assorted components that required you to use your imagination to decide what you wanted to build. And, very often, even more imagination to see the resemblence of the finished model to the thing you intended it to be. I love Lego. there’s bound to be someone out there with an objection to Lego, but I love it. I think we should do more Lego with Freddie, especially through the winter months: living just a couple of miles away from an area knkwn as ‘The Marsh’ it’s unlikely that we’ll be able to use the basketball set before May, although I could probably run a profitable side-line in illicit mud-wrestling contests — you know, like underground bare-knuckle fights, but with swimwear and no skull fractures. I’m sure my neighbours wouldn’t object (especially if I gave them a discount).

 

This Christmas has been marked by a noticeable absence of plastic tat. Freddie has received mostly books (non-fiction, about animals), Lego (plastic, but not tat), and die-cast vehicles (also not tat, Cars 3 merchandise – therefore mainstream-interest, and yes, he has seen the film, at the cinema, with other kids). I stand by my unconventional choice of lamb for Christmas dinner, because all the leftovers have been eaten – very finely chopped the remaining meat made a tasty Shepherd’s Pie, something Freddie will eat till the cows come home (but obviously not till the sheep come home, because they’re not going to be coming home, are they…)

I know what you’re thinking: this is supposed to be a blog about Down’s Syndrome, and I haven’t mentioned it once.

That’s how little it has impacted on our day-to-day lives this Christmas. It’s true he has been on antibiotics for a skin infection, to which he is prone: but this is a far cry away from the promises the doctors made when he was born – that we would spend every Christmas at his bedside in hospital while he battled dire chest infections. Touch wood, he hasn’t yet been an inpatient since he was six weeks old. We’ve had only one major outbreak of stubborn non-compliance, when I forgot to warn him in advance that half-way through the morning he would have to stop playing, put on his coat and get in the car so Daddy could drop me off at the dentist, but that was my own fault for not following procedure.

Oh, and I was inordinately pleased to see actor Daniel Laurie appearing again in Call The Midwife on Christmas Day.

 

Footnote: a few days before Christmas my daughter announced that she had read that Brussels Sprouts are now being selectively bred to taste sweeter. This is not good. I like the distictive taste of sprouts, the fact that if you put a sprout in your mouth blindfold, you will know without question that it is a sprout and not anything else. Why should everything be made to taste sweet? Why do some people want the world to be forced into some endless parade of bland, homogenised conformity?

 

 

 

 

 

29/12/17 Apologies …

I must apologise profusely to everyone whose comments have gone unanswered, and whose blogs have gone unread and uncommented upon, over the last couple of months. The browser on my ancient laptop crashed and refused to work, and the phone I am currently using will not support the WordPress app. Technology is great, when it works. I’ve been active mainly on The Odd Sock Diary’s Facebook page. Limited function has been restored to the laptop by my eldest, who is home from uni for Christmas, but he advises me that, as there is no tech support available for steam-powered devices like mine any more, I can expect it to become terminal very soon.

Would this be a good moment to wave our Facebook page about and ask you to join us there, too?

It’s been a day of wrapping and baking, in preparation for Freddie’s birthday tomorrow. Yes, I’ve got him a ‘proper’ birthday cake from a shop, but I wanted some egg-and-lactose-free ones too, so that mummy could have done cake too. I think I deserve some cake – after all, it was me who did all the hard work on that day nine years ago 😆.
As I was putting the smarties on the cakes (I’ll have to pick mine off), an Amazon parcel arrived addressed to the young man himself! From whom, I do not know. How exciting. Now I can hardly wait until tomorrow to find out what it is.
Should I be feeling guilty that most of his presents are books? This year is the first time he has asked for something other than cake, candles and balloons when asked what he’d like for his birthday – and it was a book.
Freddie still loves anything with big, bold pictures, but the stories in most picture books are perhaps getting too babyish for him. I’d already privately decided that perhaps it was time to invest in some factual books for him – as they often have great illustrations, diagrams, photographs, etc that will catch his eye, and he will learn something about the world while he’s at it. Handily, he has recently become almost obsessed with a book I bought him a couple of years ago – the Nat Geo Little Kids First Big Book of Dinosaurs. It’s aimed at children a little younger than him, but, though Freddie’s sight reading (whole word recognition) age is comparable to that of a typical child his age, his understanding of context and meaning is somewhat behind, so it’s probably just about right. It has a glossary in the back and we’ve already learned three new words – palaeontologist, hypothesis, and extinct; and because he currently wants to read it every night were getting lots of repetition of the meanings (cos I ask him to remind me what it means each time). The book he asked for is another one in the same series. So what if it’s a little young for a 9-year-old? If it piques his interest in a subject, and gives him the basic information, it’s a stepping-stone to the next level. There will be those who will say I am holding him back, that I should be pushing him to be ‘age appropriate’. But Freddie has a developmental delay, so chronological age means very little. I prefer to encourage him to be ‘Freddie appropriate’ and go at a pace that is comfortable for him. I’m not a mum who is desperate for all her kids to become rocket scientists or brain surgeons so she can bask in the reflected glory. I just want them to find happiness and self-esteem in being exactly the people they were born to be. It’s not unusual, when Freddie goes suspiciously quiet, to find that he’s not up to mischief but is,in fact, sitting on his bed looking at a book. So, it seems I may have answered my own question.
Do you think books make a good birthday gift, or are they an absolutely rubbish present?

Second Class Syndrome.

Internecine warfare would be a good way to describe the debate which rages amongst the Down’s Syndrome community over Mainstream School v. Special School. At least, it feels that way some days. It is very damaging. We risk splitting Down’s Syndrome into two classes – ‘Acceptable Down’s’ and ‘Unacceptable Down’s’. Seriously.

A friend and I were accused on a public forum, of wanting to hide all children with Down’s Syndrome away, because we have both placed our children into specialist schools. In both our cases the decision to do so was not taken lightly. It became apparent that, for the wellbeing of our children, we really had no choice. Yes, we know what the research says, but we also know very well what our children’s individual needs and tolerances are, and we always put those first and foremost. Whatever we might have originally hoped for, we had to accept that our children, in their way, were telling us that they needed something different. We did not consign our little ones to the educational bin, we did what was best for them as individuals.

 

There is one thing that we both agree on – that the best school for any child is one where their needs are met, and where they are happy, be that Mainstream, Specialist, or home schooling.

 

Many children with Down’s Syndrome thrive in Mainstream School, and when that happens it’s fantastic — good news for everyone. But there are some who do not cope in the Mainstream School environment, or who do not have a Mainstream School in their area that is willing and able to fully accommodate their needs. Mainstream does not work out for everyone. So, what are these children supposed to do for an education?

Pre-1970 local authorities were not legally obliged to provide any education for children with Down’s Syndrome, so many did not go to school at all. If you believe that children with Down’s Syndrome should never be placed in Specialist Schools, then you risk sending some children, for whom Mainstream School is not suitable, back to the pre-70s situation where there was no suitable educational provision for them. These children would have no opportunity to learn and make friends, one parent would have to give up work to stay at home with them, and quality of life would be reduced for the whole family. If you wanted to create a situation in which more people receiving a prenatal diagnosis would choose to abort, then this would be the way to go about it.

At least as the situation stands now we have options. Children with Down’s syndrome can go to Mainstream School, and for many the placement will be a success. Those for whom Mainstream does not work out for one reason or another have the option to go to a Specialist School.

Children who go to a Specialist School are not pushed in there and forgotten about – it’s not like the bad old days of the long-stay hospital. They are not hidden away. They live at home with their families in ordinary streets and neighbourhoods. They have mums, dads, brothers, sisters, friends and neighbours. They can go to Scouts, Brownies, swimming lessons, dance classes, whatever they like, alongside other kids, typical kids. They are a visible and active part of the wider community (as Specialist schools often are).

Why would anyone be against a child with Down’s going to Specialist School if they needed to? Why would anyone think that forcing a child to attend a Mainstream School, where that individual child was manifestly unhappy and unable to cope, was the best thing for them?

Is there a hierarchy of acceptability amongst people with Down’s syndrome? Are only the ones who go to Mainstream School, are ‘high functioning’, high achievers, those who can come close to the ‘typical’ norms, acceptable? Are the children who need specialist education not good enough for you? Are they not good enough to represent Down’s Syndrome? Are they ‘less than’, less worthy, less deserving of rights? Is it really YOU that wants to hide the ‘Special School children’ away, because you are afraid they will taint the fight for acceptance by being ‘unacceptable’? And what are you saying about all the children who go to Specialist School for reasons other than Down’s Syndrome? Are they less worthy, too?

If we do not accept and embrace the worth of ALL of humanity, the ‘high functioning’, ‘low functioning’, physically impaired, or those with very complex needs, then we might as well jump into bed with the eugenicists.

My child needs me to be an advocate for him as an individual, so if you think I’m ‘letting the side’ down by placing him in Specialist School, then hard cheese, old bean. My child’s needs come before your opinions. And yes, I am in the best position to know what my child’s needs are and what’s best for him. Some children with Down’s syndrome do need a specialist education. Accept it. Get over it.

For more on my view of Specialist Schools, click here:

https://kerryfender.wordpress.com/2017/07/22/2753/

You Are. But do you think?

How do we square the fact that, under UK law, a foetus has no rights separate from those of its mother, with the fact that it is undoubtedly a living human being? Anyone who has ever been pregnant will tell you that the foetus is most definitely alive. Every foetus that survives pregnancy will be born a human baby – it has no potential to become anything else. It is, therefore, a living human being. Why, once the threshold of viablility is passed, does it still have no rights of its own?

 

How do we square the fact that those who would deny the foetus any rights and protections in law under the guise of ‘a woman’s right to choose’, then limit that right to choose by steering women towards one particular course of action over another, according to what is considered socially acceptable in her circumstances? How is true choice possible when society exerts subtle pressure on women to choose one course of action over another instead of allowing her to decide for herself. For Instance, in the case of prenatal screening, a woman’s right to choose is fast being conflated, in society’s expectation, with a woman’s moral duty to abort a foetus found to have certain disabilities or conditions.

 

How do we square the above with the Rights of Disabled Persons?

 

Would it not be sensible to take the decision not to have any children at all, if you really believe that you could not cope with raising a disabled child? After all, there is no guarantee that the child born healthy and non-disabled today will remain healthy and non-disabled tomorrow, because shit happens. For that matter, what would you do if you ended up having to care for a disabled spouse, because shit happens? Or disabled elderly parents, because shit, and ageing, happen? Would you knock them on the head and say you had to do that because they were too difficult to look after and, in your opinion, had low quality of life?

 

Does asking these questions make me ‘pro-life’? If it does, what’s wrong with respecting the dignity and sanctity of human life anyway? That respect is probably the only thing stopping me from throttling the people who suggest my son should not have the right to life.

 

Does asking these questions make me ‘anti-woman?’ No woman is just a woman, she’s also a human being, and was once a foetus (as we all were). She may also be Disabled. Or any one of many other things. Intersectionality is part of all human experience to some degree.

 

How do we care for and protect women who have been abused or raped, or are economically disadvantaged, etc, and at the same time give rights and protections to the unborn child?

 

If we refuse to protect the unborn Disabled child, what does this say about our perceptions of disability? And do these perceptions negatively affect the lives of children and adults living with disability? Doesn’t the view that Disabled people are ‘disposable’ before birth tend to erode their status after birth? How does this attitude affect public planning and the provision of services, and so on?

 

Don’t kill, rape, abuse, or discriminate. Treat others as you would like to be treated yourself. Protect and care for the vulnerable. Aren’t all these things no-brainers?  

 

 

 

Our Lived Perspective:  Close Encounters 2.

This latest post from Our Lived Perspective is, again, another old one: and, again, it was brought to mind by a thread in which someone had shared a negative comment they had either seen or received, posted apparently by the mother of an adult with Down’s Syndrome, who seemed extremely embittered with her life, who blamed her daughter for everything that was wrong in her life. Some queried what had happened to make her so bitter. Others, however, pointed out how much harder it must have been decades ago when parents did not receive the support that is available now, and we’re simply told that their children would never learn anything and there was nothing to be done. I’m sure it must have been.

But, if the encounters I have had with the parents of (now) older adults with Down’s Syndrome are anything to go by, there have always been families who thrived, regardless, even back then in those days of bleak prognosis. You may say that those who had a negative experience would not come and talk to me, because they would not be eager to talk about it, especially to a stranger, and I would have to agree. But if most parents in the past were struggling, were miserable, and embittered, then you would hardly expect anyone from the older generation to come up and talk to me at all. And yet, I have had many such encounters – positive encounters. So, here’s another post about a random encounter I had with a parent from an older generation: once again, I think it demonstrates the difference between the reality experienced by the families of those with Down’s Syndrome, and the mistaken perceptions held by the public (and medical profession) of what our lives must be like. I promise you, what lady said to me about her elder daughter’s wish for a baby just like her sister is, truthfully, what she actually said. I did not make it up for emphasis. It surprised me at the time, but then, as I have learned, people are infinitely surprising:
CLOSE ENCOUNTERS IN PRIMARK.
Primark is a great place to find a bargain; but, whilst shopping for cheap shorts and tee-shirts for Freddie’s first holiday, I found something I hadn’t bargained for.

Freddie was eighteen months old. I was browsing tentatively, keeping an eye on him as he craned out of his buggy, trying to reach the nearest garments to snatch them off their hangers. ‘Hiya’ was his only word at that time, and he shouted it enthusiatically at every passer-by, hoping for a reaction. Soon enough, he got one. A lady, well into her seventies, came over and began to coo at him in a grandmotherly way. Freddie lapped it up and became utterly charming, making eyes and flirting outrageously. I joined in the conversation with some apprehension. Would she notice? I knew the words people of my mother’s generation used to describe children like Freddie, the negative preconceptions they held.

Suddenly she called out to someone I could not see, presumably a baby-loving companion: ‘Jan! There’s a little one here.’

My attention was on Freddie, I was looking down, wiping his chin. A lady’s feet apppeared in front of the buggy, a head bent over it and was treated to a luminous Freddie-smile.

‘Has he got Down’s?’ she asked

‘Yes,’ I said firmly and looked up … into a pair of distinctively almond-shaped eyes. ‘Just like me,’ she exclaimed, beaming.

We talked and talked, all shopping forgotten. The conversation glowed warm with love and positivity, as did the good-natured banter between the lady and Jan.

When Jan went off to look at something that caught her eye, the lady said: ‘If everyone was more like my daughter there’d be no wars. She sees the good in everyone.’ She told me that she had another daughter also, and four grandchildren, and, to my complete astonishment said that this other daughter had always hoped to have a baby with Down’s herself, so much did she adore her sister. ‘Longed for’ were the words she used.

Primark tee-shirt — £3.50. Finding acceptance and love among the racks and rails — Priceless.