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?
So, I hear you ask, what’s the big deal about Nadine Dorries’ ‘window-licking trolls’ tweet? Let me explain:
Nadine Dorries wanted to shame the Twitter trolls by insulting them. When we want to shame others by insulting them we use language which suggest something inherently unpleasant or despicable, for instance, we might say ‘You piece of shit!’ Excrement is an unpleasant substance – nobody wants to be compared to that.
But Ms. Dorries chose instead to use a derogatory term for learning disability to shame the ‘trolls’, thereby implying that there is something so inherently unpleasant and despicable about people with learning disabilities that the malevolent individuals we call trolls should feel ashamed at the comparison.
Once again it seems learning disability is the last bastion of safety from which nasty, cowardly and small-minded individuals can fling insults at others without getting themselves into hot water.
But the use of such language is equally as wrong as the use of racist, sexist, or homophobic language, especially when you consider that people with learning disabilities are vulnerable, and may be less able to speak out and have their voices heard.
To invoke learning disability as an insult towards those we despise is dehumanising and demeaning to people who have learning disabilities.
Disability is not (only) a medical issue. Disability, like race, is a civil rights issue. It is a human rights issue. When MPs, and others, use learning disability as a term of insult to shame others, use derogatory language, or to make a cheap joke, they chip away at the humanity of all those people with a learning disability, subtly eroding it in the public perception. This leads not only to poor attitudes, but to poor public policy-making and planning, generated by a lack of understanding. It contributes, drop by drop, to the mindset of the politicians who fail to see disabled people and their families as potential voters, and so ignore our needs; who see disabled people as non-productive, and a drain on the public purse – ‘Eaters’ as the Nazis called them, when advancing their extermination policies.
Nadine Dorries has many constituents who have learning disabilities, and many of them are eligible (and perfectly able) to vote. So are their families. She’s not representing them very well, is she?
I only wrote this post a week ago and I’ve had to update it already, because I came across another ’cause’ to add to my ‘How NOT To Get Down’s Syndrome’ file: Down’s Syndrome is NOT caused by (wait for it) … having fantasy sex with a mythical ape-man. Yes, this really has been put forward as a hypothesis, written in a cod-scientific style (probably scrawled in faeces on the walls of the author’s secure cell, I imagine). I’m not sharing the screenshot of it (the typed-up version), because there are people out there who will latch onto every word of it. There is a formula for working out the density of concrete: is there one for working out the density of people?
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:
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?
Let’s just get one thing straight, shall we? Taking Sodium Valproate during pregnancy (or at any other time) does NOT cause Down’s Syndrome.
Here’s a list of other things that DO NOT cause Down’s Syndrome. It is not exhaustive (because, sadly, the human capacity for stupidity and misunderstanding is inexhaustible):
The only thing that causes Down’s Syndrome is having (actual) sex.
That’s right! Having sex causes Down’s Syndrome. All the people in the world who have Down’s Syndrome have it because their parents had sex*. Down’s Syndrome is caused by the presence of an extra chromosome on the 21st pair. It occurs randomly at the moment of conception. Conception occurs as a direct result of having sex, therefore having sex causes Down’s syndrome. So if you would prefer not to have a child with Down’s Syndrome, then remember whatever you do, DON’T HAVE SEX.
Below is a link to s video, by Shabang Theatre, explaining how Down’s Syndrome DOES occur. When you watch it, be careful not to get the wrong end of the stick — it definitely isn’t caused by having a threesome!
*For the purposes of this discussion IVF counts as sex, since it mimics what happens inside the body after the act of marital (or non-marital) bliss.
** Sex is not a sin.