Ouch Talk Show #103 November 2013 bbc co uk/ouch



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Ouch Talk Show #103 November 2013

bbc.co.uk/ouch


Presented by Rob Crossan and Kate Monaghan



kate

Merry Christmas, put on your party hats and jingle those bells because the holiday season is upon us. I’m Kate Monaghan and your listening to Ouch Talk Show number 103 for December 2013. And here’s Rob Crossan to tell us what’s coming up.

rob

Ah bar humbug to you, Kate Monaghan. Christmas is the most miserable time of the year.

kate

Cringe, cringe.

rob

But Charlotte Walker and Kevin Healey who are two people who agree with me entirely on this will join us shortly.

kate

Hannah Cockcroft is also with us in about 20 minutes time. We’ll be asking her about life after London 2012, being a student and learning to tie her shoelaces.

rob

And I’m pleased to report that once again we will be talking about sex this month; sex education...

kate

A favourite subject.

rob

…for disabled people to be exact. Indeed. Ex-GMTV love doctor, Sam van Rood, will be along for a chat, as will Claire and Victoria from theatre company, Them Wifies, who teach sex ed to learning disabled women via a cloth figure called, well, Josephine.

kate

Josephine. Anyway, 11 year old Finian plays us out with a Christmas song that he wrong himself. He has Asperger’s and has been pushing hard to get it into that much coveted number one spot for Christmas. Stay tuned.

[Jingle: Ouch, disability talk from the BBC with Rob Crossan and Kate Monaghan.]



rob

So last month myself, Simon and Tim decided on what the killer question we ask every guest should be. And it is: would you get rid of your disability if you possibly had the choice. Now we came up with this, Kate, but with the shock of your absence I completely forgot to put it to the rest of the guests last month.

kate

Were you crying too much, is that what was happening?

rob

Yeah. It was crying, it was just scratching.

kate

Yeah. Weeping, wailing.

rob

And general outbreak of hives, exactly.

kate

I think we should ask our two guests. First of all, award winning mental health blogger, Charlotte, who has recently just won one of the Mind Media Awards for her blog.

rob

Massive congratulations, Charlotte.

kate

Yeah huge congrats, that’s amazing.

charlotte

Thank you.

kate

If you could get rid of your disability, would you?

charlotte

I always find this a really hard question because I have bipolar disorder but I had quite a young onset so around 11/12 years of age. So that kind of really formative time when you’re learning who you are and developing friendships and thinking about what you want to do as an adult, I had bipolar for all of that time. So I can’t just call it an illness and see it as something separate from me. I don’t know what my personality would be like without it and that’s a bit scary.

rob

So we’re essentially embracing a complete stranger. You would no longer be Charlotte is that how you feel if you didn’t…

charlotte

Quite possibly.

rob

…have bipolar.

charlotte

Because although the label bipolar covers such a massive range of potential symptoms and problems there is a bit of a kind of bipolar personality – maybe quite outgoing, maybe sociable, lots of ideas – that kind of thing. And I would hate to lose that bit of myself. But I did put the question to my partner once whether he thought it was something I am, whether I am bipolar, or it’s something I have. And he just looked at me like, okay now you’ve really lost it, and said, “It’s something you suffer from” because that’s his perspective. But that’s completely different to mine.

rob

That’s a really hard phrase to my head around is the idea of suffering being an innate part of any disability. I mean does this annoy you slightly?

charlotte

Yeah I mean I suppose sometimes I don’t like the phrase ‘mental illness’, for example, because you can’t call bipolar a mental illness. Sometimes it’s a condition that makes me ill. But sometimes it’s a condition that has quite good bits and sometimes I’m completely in remission with no symptoms but I still have it; it’s never going to go away. So yeah I find things like suffering illness quite problematic although clearly I do suffer at times.

rob

And you’ve done a fantastic job of not answering the question. Can I force you on this or do you have to defer?

charlotte

I don’t think I could say that I would get rid of it.

kate

So we’re taking it as a no from Charlotte.

rob

Kevin?

kate

Now on the line we have autism campaigner, Kevin. Hello Kevin.

kevin

Hi.

kate

Hi. So if we can put the same question to you: would you get rid of your disability if you have the choice?

kevin

That’s a really difficult question. I think I look at me as me. I am me. Obviously I’ve got autism and if you take away the autism then I suppose you take away… It’s a bit hard to comprehend really; if I take away the autism and you know… That is a really difficult question.

kate

Yeah. Rob, that’s why they call it your killer question isn’t it?

rob

The killer question. Because people would rather die than answer it quite clearly. Just tell us a little bit about Kevin, we’ll come back to you in a moment, Kevin. Kevin is an autism campaigner who was bullied online for being autistic to the point where he launched a campaign to change the relevant hate crime laws. So we’ll come back to you in a minute, Kevin, if that’s alright. Just for the moment let’s go on to the news which broke this month of an Italian woman who was reportedly forced to undergo a Caesarean section and give her baby up for adoption while in the UK because of fears for her mental health. Now we can’t talk about this case due to legal constraints but what we can discuss are the conversations it sparked both inside and outside the disability community about people with mental health diagnoses and parenting. Charlotte, let’s go back to you on this. Can you tell me a little bit about your experiences of being a mother with mental health issues?

charlotte

Sure. Well I got married young, by choice, and wanted to have my kids young.

rob

How young?

charlotte

I’d just turned 20 when we got married and I just about held on until we’d finished…well actually I’d finished my degree, my ex-husband was catching up, and then we went ahead and had our first baby. And because it says in every mother and baby book watch out for postnatal depression and I already had that history throughout my adolescence I thought I’d be bound to have really bad postnatal depression. But I kind of completely got away with it, it was fine. And the first year of my son’s life was just really a very good year for me. Unfortunately then when I went on to have my second pregnancy things were really difficult right from the pregnancy when I was very, very depressed. Just after I had my daughter I was hypomanic, that’s kind of like a smaller version mania – not wanting to sleep, rushing around, doing all the housework, telling everybody, “No you sit down and cuddle the baby and I will rush around and put the Christmas tree up and make the dinner.”

rob

When you have that sensation is it with a feeling almost joy and happiness or is it grim fortitude; how does it feel?

charlotte

It can be both, that’s one of the things that is interesting that people don’t really understand about a bipolar high. Sometimes yeah it’s elation and sometimes I feel like the top of my head is going to fly off from the euphoria. And then I start thinking of things like why am I taking pills to stop this, people go and buy pills illegally to take to feel like this, that’s crazy. But also sometimes I can have that same sense of being very energetic, a bit kind of driven and it can become quite unpleasant because I don’t have those euphoric feelings and I feel like, okay I’d like to stop now and sit down and be quiet but my brain won’t let me, it just wants to go on and on and on.

rob

But it did stop eventually and then you had a huge down I presume?

charlotte

Yeah exactly. And that’s the typical pattern whether treated or untreated to get somebody out of a high usually unfortunately involves them having a big down. So then for most of the kind of first year of my daughter’s life I was very, very low and it was very hard on all of us.

kate

So did you think about all of these kind of things when you made the decision to have children in the first place. What were you thinking about when you made that decision?

charlotte

I just felt like it was a kind of something I needed to do if I really, really wanted to have kids. But I did have a part of me that thought you know maybe all this lying around in bed for days saying that you can’t get up and wash, maybe that’s not depression, maybe that’s just kind of laziness. And if you had a baby to look after you couldn’t be so self-indulgent you’d have to get up, you’d have to make sure you were both clean and dressed, that you’d had something to eat. And then I suppose the experience of having my daughter showed how ridiculous that was.

rob

During that time though this low period after your daughter was born did you feel that that basic innate protectiveness which mothers are supposed to feel towards their children did you lose that?

charlotte

I lost it a little towards my older child. I was so unwell that really I was in survival mode. So it was like a biological imperative that kicked in and it was prioritise the new born, then yourself, then unfortunately for my son – for which I’ll feel forever guilty about – he was third in line when he should have been first or second. But I have to remind myself I was really ill and I didn’t get any help.

kate

What about now what’s it like for you as a mother now how does it impact your parenting?

charlotte

It’s very different now obviously because my son is 16½ now and my daughter has just turned 14, they know that I have bipolar and they know quite a lot about that and what it is and what I means. And they get quite irritated if they see in the media some incorrect or inappropriate use of the word or that people don’t really understand what it means but they’re using the word anyway. I try still not to let them see me when I’m in distress. Because even though they are teenagers I think it’s really important that I’m still the mum, the parent, the adult.

rob

How can you do that though because they’re both still living at home I presume?

charlotte

My daughter is actually with my ex-husband and my son’s with me. It’s all quite amicable but that’s just the way it’s worked out. I hide. I hide when I’m really distressed.

kate

But can you be a parent and hide? Surely being a parent means being there for a child 24/7?

charlotte

Yeah. If you had a 16 year old you’d know it’s quite difficult to get them out of their bedroom. So that gives me a lot more hiding space. A few years ago it was a lot more difficult. On the way here I was thinking about Christmas three years ago and how I had one of those unpleasant little highs and I was just so anxious I didn’t know what to do with myself I was so agitated. It was like having a day long panic attack. And that was on Christmas Eve. And that was really dire because I felt like I had to make it nice for the kids because it was Christmas Eve but in fact I was just desperate. So I kept saying, “Have some mince pies” then running into the bedroom and having a bit more of a panic attack and a cry, sorting myself out, coming out and doing that all through the day. It was awful.

rob

And we are going to come back to the Christmas and the effects it has a bit later on in the show. So I’m interested, Charlotte, what sort of advice would you give to prospective parents who have mental health conditions?

charlotte

People ask me a lot as you can imagine and it is one of the biggest decisions you can ever make. Somebody once said to me that parenting with mental health is like extreme parenting because you’ve got all these really difficult tensions and conflicts and anxieties that most people don’t have. But for most people the decision whether to have a child or not is big enough, but when you’ve got all that stuff on top. If I was doing it again now I wouldn’t do it in any way like the way I did before.

kate

Would you have children, again if you knew…

charlotte

Oh definitely. But I would be in treatment and I would stay in treatment. I wasn’t in treatment, I avoided treatment because I’ve been told that the only drug that was offered to me could cause heart defects in a foetus so I shouldn’t get pregnant. So I kind of ran away because getting pregnant felt more important for my long-term life than being on meds right then. But I would feel very, very differently now. I would want a specialist support team on hand really with specialist midwives and specialist psychiatrists.

kate

Thank you, Charlotte. We’re now going to bring back in Kevin to talk about bullying online.

rob

Are you still there, Kevin?

kevin

Yes. First of all, Charlotte, on your award.

charlotte

Thank you so much.

kate

Cyber and face-to-face bullying came into focus in November during anti-bullying week and recent figures have suggested that 81% of people with autistic spectrum disorders have experienced some form of abuse online. That is an incredibly high figure and 24% say that they’ve been bullied online.

rob

Now, Kevin, you’re on the spectrum aren’t you and you’ve been campaigning against the bullying of people with autism since April this year. Why have you made this your mission, tell us a bit more about that?

kevin

I’ve been a campaigner now for 13 years since I got diagnosed back in 2000. And I started this other campaign in April. I’ve been campaigning for others on the autistic spectrum, but this one I’m finding where I’m actually campaigning for myself and for many others as well who are on the spectrum.

rob

In what ways have you been bullied over the years then?

kevin

From childhood, I remember from living near school going into pre-school, being bullied at pre-school and being bullied in juniors and being bullied in seniors. Then leaving school going on the internet, you know the technology age, and being bullied online where it’s been so extreme; I’ve had cyber-bullying, trolling, my Twitter account cloned, I’ve been impersonated, I’ve received a death threat.

rob

Tell us about the death threat?

kevin

This was through Twitter this person got hold of my email, obviously for legal reasons I can’t mention which country it’s from, but it’s from a European country, and I opened my inbox one morning and it said, “Kevin, we’re going to send a hit squad over to finish you off.”

kate

Oh my gosh.

kevin

How did you react to this?

rob

Well as an autistic person I take things very literally. It was quite a direct threat and obviously it really upset me. I had to shut down my computer and I couldn’t go online for like weeks and weeks and weeks.

kate

What is it about having autism that makes somebody like yourself more effected by this bullying?

kevin

I think it is more intrusive. Let’s say, for example, if we take autism out of the box and if it’s somebody who isn’t on the autistic spectrum and they’re being bullied they probably have different coping mechanisms to cope with the bullying. But when somebody’s got autism we have lots of problems with anxiety, we can have depression, lots of things come into play so it affects our sentry issues, our anxieties, our confidence and it affects us in so many ways. So with the bullying campaign I want laws changed now. I want the current hate crime law in the UK to be changed.

rob

Why do you think you’ve been targeted yourself so specifically?

kevin

That’s a good question, I don’t know. I’ve got about 120,000 followers on Twitter, I’m an active campaigner. I think people see my vulnerable side of me, they just go in for the attack. I’ve had people actually cloning my profile and pretending to be me and sending out the most awful tweets you can imagine. And I’ve contacted social media sites about this. I’ve contacted the police, the police in other countries and because of the cross border international laws there’s nothing they can do. So at the moment I’ve got an MEP, Phil Bennion, who has actually taken the campaign over to Europe. And I’ve got Ian Mearns, who is an MP for Gateshead, who has actually debated it in Parliament; it’s gone through a ten minute rule bill and it’s being heard again on the 24th January. So if that gets through that stage it can go through possibly to the House of Lords for a bill. We’ve got 23 high profile celebrities backing the campaign. We’ve got people who have got autistic children themselves like Katie Price, Melanie Sykes, Keith Guthrie, Emma Noble – they’re all backing the campaign. We’ve got Lord Sugar involved; he kindly offered us help and we got a billboard campaign across the UK which was seen by thirty million people which was absolutely amazing. We’re trying to get another second billboard campaign launched hopefully in London in January, which will feature myself and two parents which have got two autistic children of a very young age. And one of the things which I really fear for – and, you know, I turn 40 next year – I really fear for the younger generation who have got disabilities and also who have got autism, who go online. Because some of these children, you know, I’m very literal, I take things very literally even today as a grown adult and I really fear that these young children who go online could actually end up taking their own lives.


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