The Politics of Down Syndrome by Kieron Smith

The politics of Down SyndromeA thought-provoking book and well worth a read. Link to it here.

Here follows a review of the book, and a short record of an interview with the author.

REVIEW of “The Politics of Down Syndrome” by Ed Lewis, Kieron Smith.

This book is a call for people to think again about what it means to be inclusive, why we’re hung up on the idea of intelligence and how an inclusive society is a better society.

Kieron Smith is the author of The Politics of Down Syndrome and the father of Tanzie, his primary-school age daughter who has Down syndrome. He spoke to Ed Lewis about the ideological and political causes of the stigmatisation and exclusion of people with the condition.

What is your main aim in ‘The Politics of Down Syndrome’?
There are so many stereotypes and generalisations that surround Down syndrome and I was trying to work out why they had so much cultural purchase. The Frankie Boyle thing[1] actually underlined this to me in the end – this supposedly edgy comedian can still use, without really feeling that he was going into ground that he shouldn’t, repeated stereotypes of this shared cultural metaphor. That’s where I started to steal from Susan Sontag and saw Down syndrome as something that represented something else, it had lost its connection with the people who actually have the syndrome itself. It had started to become something different, very much as Susan Sontag talks about cancer and people who have cancer.

So what has Down syndrome become a metaphor for?
It’s used for stupidity, it’s used for someone who’s outside of society. The Americans use ‘retard’ a lot as an insult, which is used less here (there was a case, for example, of another comedian,Doug Stanhope on Radio 4 who got censured by Ofcom for using it in relation to Sarah Palin’s son). But here ‘Downs’ is used a lot, ‘mongol’ is still used occasionally. Insults around learning disabilities are used fairly normally on a day to day basis, whereas if you inserted a racist term instead, the same phrases wouldn’t get used. That’s a way to exclude people. It means, for example, that as soon as you have a conversation if there’s a diagnosis in pregnancy for Down syndrome, you see that metaphor, you don’t see the person. That’s the problem – it’s always a dehumanising exercise when you’re perceived as something else. Otherness and stigmatism mean that you’re not seen as human. And that’s where it starts to have real effects on people.

Do you think the dehumanising quality of the metaphor reflects the racist origins of the John Down’s diagnosis in the 19th Century, in which he labelled people with the syndrome as ‘mongoloid’ or ‘mongol idiots’?
I think where you get a strong image developed in society, there are residues of these things, partially because of the physical characteristics which are common with the condition, which underline the otherness of it. This leads to the phenomenon of people going out and getting plastic surgery for their children, which is horrendous! I think the racist origins of the diagnosis is something that society has never fully faced up to – it’s surprising to me how many people don’t know anything about the history of Down Syndrome. We’ve seen recently with ‘Mongoloid’ being thrown around again it’s still there, there’s still an element of this. You can’t use ‘Mongol’ as a throw-away word, it’s got so much baggage.

Tell us about the effects that prejudice and discrimination have on people with Down syndrome and the ways in which they are excluded.
They start from conception really. There’s a default position because of this existing stereotype that Down syndrome is such a terrible thing to bear for a person that it’s a legitimate thing to screen for it. Yet we don’t screen as a society for other things, Fragile X and cystic fibrosis for example, no particular difference in terms of the process, but because the image of Down Syndrome is so strong, the termination rates are very high. If you’ve not met anyone with Down syndrome and you don’t understand the particular things that can help in terms of development, in terms of educational intervention and the opportunity to lead a fulfilling life, then you end up with a termination rate of 91%. That’s a big number, so that’s a pretty solid effect. Furthermore, the company Sequenom have successfully trialled its blood test, which is completely non-interventionist in terms of potential harm to the foetus and which will give virtually 100% in terms of screening result. This seems likely to increase the number of terminations.[2] I’m not, as I say repeatedly in the book, taking an anti-choice line, if we addressed some of these issues around Down Syndrome it would be an opportunity for this to be looked at by society. New Zealand are currently looking to introduce a screening policy as they haven’t had one before. There is some opposition to this but it’s from a group of anti-abortionists who latched onto this issue. And in the US as well, people who tend to campaign around this are anti-abortionists and they will actually attack people from the Down syndrome community who are talking about choice. It’s very difficult. You end up with quite a small pitched battle within quite a small section of society. The left and other political groups don’t tend to think this is an issue at all, so the disability community can get very little breakthrough on this because again it’s so specific to Down syndrome.

Despite being pro-choice, is it the case that what you’re not in favour of is the choice to abort a pregnancy being made just on the grounds that a foetus has Down Syndrome?
I wouldn’t care if society was more integrated and people’s understanding of what Down syndrome is was clearer and less inhibited by the stereotype. It’s down to the individual, the woman can choose to have a termination on any basis – Down syndrome or not, that‘s fine – but actually in this environment what we’re finding is that they get the result and they’re presented with no choice. They literally, in a lot of hospitals, will say ‘when would you like to book in a termination?’ So even though they obviously have a legal choice not to terminate they’re not made properly aware of that, because of how strong assumptions around the condition are. Absolutely, so it’s a screening out exercise at that point. There are other things that are screened for treatment but you can’t treat Down syndrome – it’s in your chromosomes, that’s it. My wife runs a local support group, it’s got 80-odd families involved, we will get referrals from people who’ve come looking for more information following a diagnosis in pregnancy. But of course most women don’t get this kind of information, so it’s very frightening: ‘This sounds terrible, what do I do? Well, here’s a doctor in front of me telling me I terminate’. But it’s a dodgy political ground, because you don’t want to give any ground when abortion is already under siege half the time. Another area in which the effects of exclusion is evident is education.

Are you a teacher?
Yes, I’m a secondary school teacher. But I’ve not taught or encountered anyone with Down syndrome. I think you’ve just answered your own question! Considering it’s the most common syndrome in the country. My daughter is at a mainstream infant school, we wanted to go mainstream all the way, unless you’re going to be included in the education stage, how are you going to be included for the rest of your life? But it’s still very unusual, most children with Down syndrome don’t make it to secondary school. I think political clout comes into play here. I think the parents of children with Down syndrome want the best for the children but often they find it hard to go through the battles. Unless you’re quite an educated, middle class family, can really push on every front, it can be an uphill fight. Primarily, things like speech therapy which are quite expensive for LEAs to provide, but make such a massive difference. There’s also the recent history of institutionalisation – up until very recently there was an active exclusion of Down Syndrome people because they were seen as un-educable. So most adults you’ll meet with DS have had no formal schooling at all. That’s starting to change the further we move away from the late 70s and early 80s. Then you’ve got on the ground the anxiety at the school level about hitting targets and results and about the lack of resources they might have because it’s very hard to get, since schools receive a set amount of money for use for pupils who need extra help. Although you’ll be statemented as a child with Down syndrome, although not always, you won’t necessarily get any extra cash for that. I’ve felt from what I’ve read that there’s been pressure from head teachers to be able to exclude children that they don’t want in their schools. And I think that there’s a bit of fear because of people not knowing about how to deal with a child with Down syndrome, what extra support they might need, and what they might not need. I mean, kids with DS don’t tend to have global delay, it’s specific areas that need extra help. And actually once they’re addressed, inclusion tends to be pretty straightforward. That couldn’t conflict more sharply with the image we have, and I suppose some of the assumptions that I have, or have had. The assumption that there is some kind of global delay, some kind of generalised lack of intelligence – I think we’re sold the idea that that is, along with the physical features, at the core of Down Syndrome. And that any person with the syndrome will have extremely limited educational potential.

But that turns out to be utter bollocks, right?
Pretty much. It’s only relatively recently research has shown in terms of understanding some of the processing differences, so people with Down syndrome generally find it quite difficult to retain stuff verbally, but actually regarding written word and number span, memory, vs peers, is actually sometimes better than children of the same age. So being shown lines of numbers and being able to write those in response, which is fascinating. And you could play to those strengths. A lot of kids have got better visual memory, etc. Obviously, yeah. So children with Down Syndrome need to be able to use things like Numicon for maths, and visual methods. Reading, and comprehension through the skills that reading gives you, and writing as a result of that, plus the speech therapy, means actually you’re on a much more solid footing for your whole schooling, if done early. There will be difficulties, I won’t deny that, but if you’ve got peers who you’re friends with and they’re growing up with you and you’re included in normal play and relationships, that’s the best way for things to be.

Every year the school says to us ‘oh we’re really surprised’, because she keeps doing stuff they’re not expecting. Even though the school that my daughter goes to has been very, very positive and really tried very hard, and they find it really rewarding because she keeps exceeding their expectations. So she’s dong blended phonics at the moment, she’s in the bottom reading group but she’s doing better than some of her peers who don’t have Down Syndrome, and she’s going to be on Level 1 National Curriculum at the end of Key Stage 1. It can be rewarding for kids in the class and schools generally just in terms of inclusion. She’s just a good member of the class and though she has one-to-one support they’re not hovering near her or sitting on the table next to her and she’s joining in and taking part in the school day.

But current education policy in the UK is moving in the opposite direction?
Yes, quite. We were seeing examples of where it was improving and teachers saying ‘you know, this isn’t such a bad thing’ and training teachers were getting some exposure to children with special educational needs (SEN). Now it seems to be going in quite the opposite way and there has been an obvious pressure to get away from this apparent ‘bias towards inclusion’, which is farcical from any parents’ experience.

I’ve made a link in the book between this policy and the ideas of being able to move away from a purely state education system. Because I can see it being quite a scary thing for independently run academies and free schools to say we’ve got to deal with all these kids who’ve got some sort of statementing or SEN as defined by the current system (obviously those with learning difficulties are a very small percentage of them).

The new government have brought out a new policy on SEN, right?
One of the reasons I originally rushed the book out was that the white paper was going to come out in September last year, and I wanted to have the book out at the same time, but they’ve delayed that on the basis that they’re doing some trials around the proposals within the paper. They are generally looking at how you would take personal budgets and a whole load of things they’ve talked about over many years, but there are a few authorities that are trialling that with the parents. But there are still requirements under the existing law so they’ve got to be a bit careful about it. I don’t know that there’s been any actual results from that yet. It’s so contentious for them anyway, I’m not sure they wanted to deal with it straight after the disputes with HE.

Final thoughts about political strategy – where to go from here, both for the Down Syndrome community and others already campaigning with them, and broader political forces that you think maybe should make common cause with them, such as the left?
I think the left’s failed to deal with disability very well, generally. There are some fairly well worn paths around explaining disability and the exclusion of people with disabilities just around the fact that they’re not seen as having value within the generation of capital. This is great in terms of how to explain something away, but it doesn’t really engage with the issues on a daily basis. I think we need a debate in which we start engage around different issues raised by Down syndrome. I’m not saying it has to go a particular way but I think that having that conversation and starting to address some of the stereotypes around Down Syndrome is incredibly important. Having the opportunity of the green/white paper around SEN, it has to be discussed. And I think there would be benefits for the learning disability community as a whole, because a lot of these things apply more broadly. One of the issues around disability, which the disability movement has addressed for many years, is that there are so many differences involved. But actually one of the things we want to do is to say ‘at the end of the day, they’re just people like us. We’re all the same.’

But it’s very hard to get breakthrough – there are so many issues at the moment, it’s not part of the economic discussions and other issues which are dominant, but tactical intervention over some of this stuff is pretty important. It would be interesting to have a debate on the left about this. I’ve trawled through loads of left literature trying to find stuff that was relevant, that was up to date, and there’s not a lot out there. There is some stuff written by disability groups and disability activists, but again very little about learning disability. And there are a lot of people with learning diasbilities, not small numbers! It’s one that shouldn’t be brushed under the carpet and ignored as a difficult issue and I think would be helpful for the left to try and engage with it generally, for its own understanding of society and the nature of inclusion. That’s my challenge! The cover image is of Kieron’s daughter, Tanzie.

1. The ‘Frankie Boyle thing’ is summarised in the following excerpt from a Daily Mail article [which we won’t link to, due to the papers awful reputation]:

Comedian Frankie Boyle had an on-stage run-in with a mother of a Down’s syndrome child after he made fun of victims. The former panellist on BBC quiz Mock The Week devoted five minutes of a stand-up show to a foul tirade against sufferers and their parents by criticising their hair, clothing and voices. He then turned on the audience, picking on a couple – Sharon and Kieron Smith – in the front row and accusing them of talking. Laughter turned to awkward silence when Mrs Smith told Boyle: ‘My daughter has Down’s syndrome and I’m very upset.’ Boyle was unrepentant. He made fun of the couple before saying: ‘This is my last tour. I don’t give a **** what people think.’ His behaviour has prompted online outrage after the couple revealed their ordeal to friends in a powerful blog posting. The blog says: ‘Frankie Boyle spent a good few minutes making joke after joke about people with DS. And they weren’t even clever or funny jokes either… I expected dry, nasty, crude humour, yes, but unimaginative humour poking fun at the stereotype of people with Down syndrome was not something that I expected. ‘The more jokes he made, the harder I found it to stay unemotional and detached. My husband noticed and asked if I was OK. At which point Frankie noticed him talking to me and came over (oh how I wish I had not booked front row seats). ‘He asked why we were talking during his show. I wanted the ground to swallow me up. I have never felt so small, so stupid, so emotional and to be honest so pathetic. How can a stranger make me feel like that? ‘So I told him that my five-year-old daughter has Down syndrome and that I was simply upset at some of his jokes. He tried to laugh it off, “Ahh, but its all true isn’t it?” to which I replied no, it wasn’t. ‘He then went on to say that it was the most excruciating moment of his career but then tried to claw the humour (?) back by saying we had paid to come and see him and what should we expect.

2. For more detail, see this piece in the New Scientist. ~ New Left Project,

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