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    <title><![CDATA[All in the Mind]]></title>
    <description><![CDATA[All In The Mind is Radio National's weekly foray into the mental universe, the mind, brain and behaviour - everything from addiction to artificial intelligence.]]></description>
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    <copyright>Australian Broadcasting Corporation</copyright>
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      <title><![CDATA[All in the Mind]]></title>
      <link>http://abc.net.au/rn/allinthemind/</link>
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    <itunes:author>ABC Radio National</itunes:author>
    <itunes:summary><![CDATA[All In The Mind is Radio National's weekly foray into the mental universe, the mind, brain and behaviour - everything from addiction to artificial intelligence.]]></itunes:summary>
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      <title><![CDATA[2009-01-03 A day in the life of...Meet the Ingersons ]]></title>
      <description><![CDATA[Four-year-old Tara has a very special brain. Like Rain Man, she was born without a Corpus Callosum. Itīs the headīs superhighway -- a thick band of nerve fibres connecting the two hemispheres of the brain. Join Natasha Mitchell as she experiences a day in the life of the Ingerson family, with rare insights into one of the most complicated neurological birth defects.

Original broadcast: 12/4/2008]]></description>
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      <pubDate>Sat, 03 Jan 2009 00:00:00 +1000</pubDate>
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      <itunes:author>ABC Radio National</itunes:author>
      <itunes:summary><![CDATA[Four-year-old Tara has a very special brain. Like Rain Man, she was born without a Corpus Callosum. Itīs the headīs superhighway -- a thick band of nerve fibres connecting the two hemispheres of the brain. Join Natasha Mitchell as she experiences a day in the life of the Ingerson family, with rare insights into one of the most complicated neurological birth defects.

Original broadcast: 12/4/2008


												 TRANSCRIPT: Natasha Mitchell: All in the Mind on ABC Radio National, Natasha Mitchell with you for a new year of matters heady. Welcome to our best of 2008 Summer Season.

Now you might recall I recorded a brain surgery a while back which sparked all sorts of compelling correspondence from you, one of which became 'Julie's Story' -- a dramatised diary of a brain tumour. Another, todayīs program - And we were delighted the series of shows won the Grand Prize at last yearīs New York Radio Festivals.

The Ingerson family from Brisbane wrote because Caroline Ingerson had had the same brain surgery 15 years ago. But then they mentioned Tara, their four-year-old daughter with a very unusual brain indeed. Like Rain Man, she was born without a corpus callosum, the large band of nerve fibres that connects the brain's two hemispheres. Here then is a day in the life of the Ingersons and an insight into one of the most complicated birth defects. Agenesis of the corpus callosum, or ACC.

Natasha Mitchell: [arriving at the Ingersons' house...] Is that Caroline? Hi, Natasha here.

Caroline: This is Tara.

Natasha Mitchell: Hello Tara.

Caroline: Off you go. She might not be able to walk or crawl but she rolls everywhere -- and I mean everywhere. Whereīs Chrissie? Whereīs Chrissie, Tara?

David: No rhyme or reason to anything here. Itīs been, I think we can only say, an interesting ride...yes.

Caroline: Definitely ups and downs.

David: We were originally thinking of going back to England, Iīm from just outside London, obviously, and what happened was we spent a long time with things in limbo with me looking after Caroline.

Natasha Mitchell: How did you meet?

Caroline: I went over to England with a friend on a working holiday and we actually met up with Davidīs brother first of all and my friend started dating him.

David: And I was appointed car driver because my father wouldnīt trust my brother to drive his car.

Natasha Mitchell: The making of a great romance.

David: If you want to put it that way, yeah.

Caroline: Okay, going to put your pants on? Ready, lay down, so you want to sit up...Oh, where do you think youīre going? Hi, Iīm Caroline Ingerson. Iīm the mother of Tara.

David:And Iīm David, Taraīs father.

Natasha Mitchell: The fact that you could have children is an extraordinary thing, isnīt it?

Caroline: Yes, I had an AVM in the brain when I was 21.

Natasha Mitchell: So thatīs whatīs called an arterio venous malformation, a congenital defect in the brain?

Caroline: I was just at work one day, happy...and then all of a sudden I fell to the ground, I couldnīt get myself up.

Natasha Mitchell: You'd effectively had a stroke, hadnīt you?

Caroline: It was like someone had cut me in half, my whole right side was numb, I couldnīt speak properly, it was very slurred and slow. I had to learn to walk again.

David: This was someone who was very independent and suddenly was totally dependent, obviously that took a long time for her to adjust to that as well.

Caroline: When I actually fell pregnant with my first child it was like, ooh, you really shouldnīt be pregnant, you know thatīs not a good idea...a bit late now!

Natasha Mitchell: Eight months after major brain surgery you are pregnant, now itīs 14 years later and youīve got a son nearly grown up.

Caroline: Yes, definitely, he really helped out because my body was just in chaos at the time, so it really helped turn things around. 

Basically...getting ready for a trip out, always got to have heaps of food, havenīt we, Tara?

Natasha Mitchell: Tell me about Taraīs birth.

Caroline: Well everything was going fine, she was a very happy baby, hardly ever cried.

David:Really Caroline from about four months was saying thereīs something wrong, thereīs something wrong. And even at eight months I didnīt think there was, so we went and saw the doctor and he turned around and he says, 'No, sheīs just a bit slow, donīt worry about it.'

Caroline: And we went to a doctor who listened to us, for once.

Natasha Mitchell: And the key test was an MRI brain scan -- and what did that reveal?

David: It revealed agenesis of the corpus callosum, which is relatively rare. We actually knew something was wrong after the MRI because the guy who was doing the MRI was an American who was on exchange down here, and he actually turned around and said, 'Have a look at this,' to some of the other staff down there, 'you wonīt see this very often.'

Elliott Sherr: And the corpus callosum is one way to say it would be the super highway that connects the two different sides of the brain. So 200 million nerve cells connect across the two sides of the brain, the left and the right, through the corpus callosum. But what exactly is being communicated is perhaps not so well understood.  

Well, Iīm Elliott Sherr, MD PhD, and Iīm assistant professor in the Department of Virology at the University of California, San Francisco and I guess you could also say that Iīm the director of the Brain Development Research Program at UCSF. Thereīs both a sense that the corpus callosum is necessary to communicate in the sense of a direct communication back and forth, but there is also the sense that the corpus callosum is part of down-regulating the signalling thatīs going on from side to side and allows the sides to become specialised. For instance when babies are very young they have language representation on both sides of their brain, and over time that becomes more one-side-dominant.

Natasha Mitchell: When we look at images of the brain itīs that vast tract of white matter, isnīt it, that connects the two cerebral hemispheres?

Elliott Sherr: Itīs a structure that has been recognised for a long time in part because itīs so large and so hard to miss.

David: And then it was down to see the specialist a couple of weeks later and we just listened to what he was saying and were absolutely stunned...on being told that your daughter is never going to walk, never going to be able to talk, is probably going to be blind and deaf and they canīt say how long sheīs going to last. And youīre just thinking the whole world has collapsed.

Caroline: Apart from missing her corpus callosum, her cerebellum, which is the back of the brain, had only grown to about a third of its size.

Natasha Mitchell: And thatīs important for motor control and balance, coordination, that sort of thing?

Caroline: Yes, so thatīs another thing thatīs played a major role in Tara, also she had a lot more water spaces, a lot more white matter than she should normally have.

Elliott Sherr: There are a number of other things that we can see when we do a MRI. One of them would be nerve cells that are called heterotopia that havenīt migrated from the middle of the brain out to the surface. We are all accustomed to seeing how the brain is folded. In a number of children with agenesis we see that there are either too few of those folds or too many, and there are other things: inter-hemispheric cysts, and cysts in other parts of the brain, and itīs quite a laundry list, unfortunately, of things that we can see.

Natasha Mitchell: Right, so these can be very messy little brains?

Elliott Sherr: Absolutely. And in our research and in those of others we find that if you have more of those changes in brain development, often that goes along with having the worst prognosis.

Natasha Mitchell: Weīre looking at Taraīs MRI brain scan images -- so there really is a large area of fluid rather than brain.

David: And with the way she is she really is very lucky, because if she had everything there along with the fluid, then it would unfortunately have killed her probably by now. Itīs not our best shot, we have some photos that are a lot better looking than that.

Natasha Mitchell: Still itīs her brain, itīs no one elseīs.

Caroline: Thatīs right and itīs hers and thatīs what makes her what she is.

Natasha Mitchell: Caroline do you ever wonder whatīs going on inside her head?

Caroline: Yes, I feel like I feel a little bit closer to Tara because Iīve been through something similar with the AVM, where when I was actually taken into hospital I could actually hear but I couldnīt speak. So when a doctor actually came in and said, 'Sheīs not going to make it through the night, youīd better get all the family,' I was like screaming inside and wanting to say all these things but I couldnīt. So I suppose in that way I can feel for Tara in not being able to communicate, and how it must be just such a muddle and mish-mash sometimes for her.

Natasha Mitchell: Tell me about the thumb signal that you do when you are communicating with Tara.

Caroline: Iīm doing a type of sign language called Makaton, so itīs just helping children who either have hearing difficulties or learning difficulties.

David: When thereīs food or drink around she makes it very, very clear -- if thereīs something she wants to do she will tell you.

Caroline: Would you like some banana? A good breakfast.

David: Sheīll actually eat as much as our son eats, and heīs 15, because her body burns up so much more energy.

Natasha Mitchell: Wow, and sheīs a skinny, skinny mite.

David: Thatīs right, so itīs really disconcerting, because people will see her go through two or three or sometimes four courses of food.

Caroline: Thankfully for Tara she has had the sucking reflex, but thatīs still been something that weīve had to work on, when it was just like an immature problem with the jaw still, getting those muscles working. So we actually had to use, itīs almost like as vibrating toy and you actually put it round on the outside of their jaw and even inside their mouth to just help to stimulate those muscles. And now Tara can eat anything, she has everything that we eat.

Natasha Mitchell: She is very ready for some more banana.

Caroline: Definitely. Oh yes, she knows sheīs number one in the family attention-wise.

Elliott Sherr: There is a sub type of ACC called acardi syndrome, those children have epilepsy from the very earliest of ages, many, many of them never learn to walk, theyīre wheelchair bound, need to be fed through a tube thatīs placed to connect into their stomachs, and [they] donīt have any language or any ability to really use their hands to manipulate things. Very, very disabled.

Natasha Mitchell: What about behavioural issues -- Tara is a very good-natured little girl, fairly happy it seems. But is that across the board?

David: A lot of the children have autism spectrum disorders, thatīs very commonplace, anger problems are also very common and youīll find some of the people, the parents who are looking after children with these kind of disorders, thereīs even been cases of people being jailed who are afflicted with this kind of thing, simply because they cannot address problems.

Elliott Sherr: And then on the other hand there are individuals who are out in the world, you know hold down jobs, maybe had some mild problems in their school years but are also missing their corpus callosum. For instance thereīs a very well known individual named Kim Peak; a movie, Rain Man was made about him. and heīs quite a smart guy, he has an amazing memory and has quite a mastery of history facts. But in spite of those amazing skills he canīt get himself dressed in the morning, he canīt make himself breakfast and couldnīt even take a bus to get himself to a job. 

Natasha Mitchell: As youīre getting ready today to go out -- and weīre off to a physiotherapy class on a horse -- what sorts of things do you need to prepare for the day?

David: We take a syringe with some drugs in it, basically if she has a seizure, itīs to relax the muscles. Tegretol is an anti-seizure medication that sheīs on full time then on top of that we carry and ice vest. She gets very, very quickly overheated and as soon as that happens then she can start having seizures.

Natasha Mitchell: Hard work...weīre in Brisbane, itīs warm.

Caroline: Yes, not the best place to be.

Natasha Mitchell: Why the overheating issue, whatīs that got to do with missing a corpus callosum?

David: We donīt actually know, and thatīs something that weīve all been talking about world wide for quite a while. And in Taraīs case she has a hypothalamus that controls her body temperature also appears to be quite heavily faulty so itīs quite amusing, sheīll have one rosy red cheek -- well that cheek is quite a few degrees warmer than the other cheek.

Natasha Mitchell: Epileptic seizures are a fairly recent addition to her experience arenīt they?

David: It is, unfortunately. Youīre constantly on the lookout for any of the warning signs of something coming along.

Natasha Mitchell: So she since has had every type of seizure, tell me about the laughing seizure.

David: We made the mistake of buying a spongecake...and usually we make most of the stuff because we are so worried about whatīs inside them. We are all sitting there and suddenly Tara starts chuckling, and then this chuckling gets louder and louder until sheīs full blown laughing. This around 6.30 in the evening. Now by 8.30 we were starting to get concerned, 10.30 we were very concerned.

Natasha Mitchell: Sheīd been laughing for four hours?

David: Yes, in the end she was laughing till close on to midnight. We didnīt know what had caused it so the following day she had a little bit more of the cake, she started laughing again. This time it lasted only about half an hour and when we were speaking to the specialist they go, 'Oh, can you bring her here?' And why? 'Oh, weīve never seen one, they are really rare, no one has been able to test on them properly. Can we wire her up and just monitor what happens?' It was very, very scary.

Caroline: Still in nappies...and you know some people say, oh it must be nice you know, youīve got a baby for so much longer... And you sort of think that but when youīre put into that situation itīs more like no, this isnīt normal, and even though we all say they grow up too fast, when youīre sort of put into that situation...no. 

Mark: We play sometimes, but we have a good relationship. A bit different to normal, itīs like sheīs not able to come outside or anything.

Natasha Mitchell: How do you communicate?

Mark: Talking, a bit of sign language sometimes if I can remember how to do it. Hi, my nameīs Mark, turning 15 this year.

Natasha Mitchell: So you were ten when Tara was born, what was it like when she was born and you found out what was up?

Mark: I wasnīt happy, but I didnīt also mind, like I knew that we were going to need a lot of help with her and stuff. My parents have to go to hospital a lot more now, they donīt have much time together any more, too, so yeah...

Natasha Mitchell: Has it meant some of the attention got taken away from you?

Mark: Yeah, kind of.

David: Do we know you?

Mark: Oh no, I just live outside, just outside our front door, sometimes in the dog house if Iīm lucky.

Frances: Can I kiss the princess's hand? Can I kiss your hand? We try to do things with Mark because they canīt do it with Mark. We go to his soccer because heīs absolutely mad on soccer, Iīm Frances, Taraīs grandmother and this is Len, Taraīs grandfather. I adore her and when itīs a positive day you feel so great and then if the next day is not so good you think, oh dear, you know... 

Her great-grandmother was a beautiful pianist and just playing at home and everything and she didnīt plunk at the piano, she had fine fingers and it was a very gentle action. And from the time Caroline bought Tara this piano her fingers are just like her grandmother's. You play your piano, Tara -- and you can see that she loves it. All these children have been gifted with something and youīve got to find out what it is. Weīve noticed with a lot of disabled children a lot of attention...either one of the partners just walk out. As the child gets older itīs going to be harder...lack of money, thatīs another thing that causes all the tensions.

Natasha Mitchell: How are you two faring?

David: When sheīs at home looking after Tara Iīm at work and when sheīs asleep Iīm looking after Tara -- an ideal marriage!

Natasha Mitchell: So whatīs for tea tonight? A day in the life of the Ingerson family in Brisbane on ABC Radio Nationalīs All in the Mind with me Natasha Mitchell going global online and on Radio Australia. Four-year-old Tara Ingerson was born missing a fundamental part of her brain, the thick band of nerves called the corpus callosum, connecting the two hemispheres.

Wendy: So where are we going to go today Tara, are we going to go for a horsy ride, a horsy ride, yes, and who are we going to see? We are going to see Daisy, we are going to go for a ride on Daisy. Weīre going down to Arundel to the riding for disabled down there and Tara partakes every Monday morning at a hipotherapy lesson.

Natasha Mitchell: Hipotherapy?

Wendy: Thatīs right, we thought, what are they doing with hippos? But itīs actually come from the Greek word Hipo which is to do with horse. Before she started she really could not sit up by herself.

Natasha Mitchell: Well letīs head off and meet Daisy.

Wendy: All right Tara, here we are sweetie, are you ready to ride? Yes, sheīs all ready to go -- thatīs great.

Hi, Iīm Wendy Mungomery, Iīm the physio and I specialise in treatment called hipotherapy which utilises the horseīs movement to help me treat children with muscular conditions. Weīve got Susan, Errol, who are our two helpers and Sarah and Daisy the horse. Say, 'go Daisy.' 

I discovered it as an undergraduate at the University of Queensland and I thought, what a wonderful job growing up with horses. And then doing physio, I thought Iīve just got to pursue this, this is the ultimate job working with kids and horses at the same time. And when you see the results you just know it works. Sheīs a little bit stiff in the hips this morning so what weīre doing is using the movement of the horse to get her to relax her muscles, she can get in a better position to work on her seating posture. [Sings...] Along, singing a cow girl song, riding along -- there we go Tara weīve stopped at the elephant, letīs see if you can stretch your legs down a little bit more, sitting up nice and tall, ready to go...say 'go Daisy'...good girl.

So now sheīs settled a bit better 'cause weīve got her knees a little bit down, so the horseīs movement is going to put some stimulus up through her body and her body is going to react as though she is walking so she is working on all the muscles that she needs to use when sheīs walking. I can treat all sorts of kids that donīt respond to a lot of clinical treatment where youīre having to use cognitive cues to get them to do exercises. But this therapy, the horse is doing the treatment, basically, and the kids are there having fun and not even knowing that theyīre working.

Natasha Mitchell: Sheīs gone a little bit wobbly there.

Wendy: But as we go round you can see sheīs got herself back to the middle and thatīs what itīs all about.

Natasha Mitchell: You wouldnīt get me on a horse without my hands hanging on...

Wendy: Well Tara may show you one of her tricks that sheīs only been doing for the last couple of weeks, she actually gets up on her hands and knees. We are wanting to develop her shoulder girdle so the muscles around her shoulders so she can actually get up on the floor and crawl at home -- sheīs not doing that yet. Ready to go -- good, that was really good. That was probably the best. Each week we get better and better, basically, so every week weīre doing something new.

Natasha Mitchell: Elliot, given that we are increasingly understanding the brain to be a much more plastic organ than we originally thought, does this concept of neuroplasticity give some hope for children with this condition? That somehow the brain can adapt to the missing parts in a partial way?

Elliott Sherr: Thatīs actually one of the important parts of our work. Knowing the individuals who are doing well in spite of the fact that their corpus callosum is missing tells us that we might learn from them how neuroplasticity has adapted to give them a better shot at things.

Natasha Mitchell: Because in a sense youīd think that the hemispheres might find other ways of communicating to each other.

Elliott Sherr: Exactly, or another potential answer might be that instead of the hemispheres needing to communicate, maybe both hemispheres are able to do the same thing so that there is a duplication of functions on the two sides.

Natasha Mitchell: A double brain?

Elliott Sherr: In a way, yes.

Natasha Mitchell: Interestingly you still sometimes present her as having cerebral palsy. Now this is not what she has, why do you do that?

David: Because unfortunately agenesis of the corpus callosum isnīt recognised in Australia but the actual conditions that it shows fall into the same category as cerebral palsy. We were actually at a Centrelink office explaining the situation and they said she had to have a full MRI scan every four weeks to investigate whether this part of the brain is possible to grow back.

Natasha Mitchell: What was your response to that?

David: I didnīt hit the person, I wanted to but I didnīt.

Elliott Sherr: Unfortunately since the corpus callosum develops very early in brain development, long before the babies are born, scanning the babies again and again wonīt change the diagnosis.

Caroline: What we said was, 'Well if you lose a leg it doesnīt grow back so itīs the same with the brain. ' Really we feel at this stage that there isnīt enough support for children like Tara who has multiple disability. If they did the work now and helped now while theyīre young and pliable, so as to speak, then hopefully there wonīt be so much of an impact on society as they get older.

Natasha Mitchell: Well youīve become activists, in a sense, I gather youīve even had a local member of parliament sit in on some meetings with the Education Department with you?

Caroline: Yes, weīve got a very good politician who has sat in on some of our meetings with Education Queensland -- just basically trying to get the extra services we need for Tara.

David: To start with things were very good but unfortunately in Taraīs case, at the age of three it changed from going through Disability Services to going through part of the Education Department and we found the services there simply do not really exist in any true form.

Caroline: Sheīs doing a lot more than what they ever said she would do, so I think that just gives me hope for the future that we can do this, weīre growing as people, weīve had to take a different journey to what we expected and weīre just proving them wrong each time.

David: One of the things I think weīre lucky on -- and this is the ironic thing -- is that Carolineīs stroke, because when she had it there was not the services there or anything. She was told she was dead, basically, and she wouldnīt survive, she turned around and said to them, no, Iīm going to prove them wrong. We found that with Tara. We were told that she was deaf, blind, dumb and would never be able to move.

Elliott Sherr: And as we sit talking today there are at least 30, maybe 50 genes that we know, that when disrupted lead to an agenesis of the corpus callosum.

Natasha Mitchell: Fundamentally these are genes, and so proteins that are involved in the early stages of brain development.

Elliott Sherr: Absolutely.

Natasha Mitchell: The picture is pretty complex and I gather that in only 25% of cases thereīs an identified cause and all sorts of different syndromes can lead to no corpus callosum being present in a birth.

Elliott Sherr: Probably genetic is the most significant reason. And then thereīs probably also some evidence of environment playing a role. So we know that in children who have been exposed to persistent and high levels of alcohol, they develop something called foetal alcohol syndrome, and a lot of those children unfortunately have a missing or very, very thin corpus callosum.

Natasha Mitchell: But your work points to a range of other possible causes too?

Elliott Sherr: Ultimately right now over two thirds of the individuals with agenesis donīt have an identified cause, and we think a lot of those will be either recessive disorders, cases where neither parent is affected but theyīre both carriers of a recessive gene that when mixed in combination results in agenesis.

Natasha Mitchell: So the child ends up with two copies of that gene?

Elliott Sherr: Exactly. Or something even more complicated than that where many, many genes interact together to lead to the corpus callosum not forming.

David: Younger children are not being put in old peopleīs homes any more, thatīs a good sign, but unfortunately I donīt know what the future holds. And sometimes you look at it and youīre really in two minds as to whatīs for the best; you have no idea.

Natasha Mitchell: What do you mean, two minds?

David: Beause sometimes you go through the thought, is it fair on the child going through all that she goes through -- and we have been through the situation once where they actually said to us, 'Do you want us to turn off medical aids and just let nature take its course?' Well they did that, and she just kind of...half an hour later sheīs just sitting up in bed giggling as if nothing had happened. But at the same time you think, what if that happened, will that also be for the best? We donīt know what the outcome is. There are tests going on even now, the results might not be terribly good but do you even want to know the results is another question you ask. At the same time the group we belong to you do occasionally see the posts coming up from the heap saying unfortunately the child has passed away. Itīs one of those things, itīs something that happens.

Caroline: I mean if she doesnīt walk and canīt weight-bear all the different equipment, we will need to support her, all that sort of thing comes into play, we sort of just deal with things day by day.

Natasha Mitchell: If you do think about the future, what do you feel?

Caroline: Just regrets, you always want your child to be perfect and to grow up, get into the workforce, you know, get married, have their own children, that sort of thing. And of course at this stage none of those seem possible for Tara. But I mean we are doing everything that we can, and hopefully weīll be able to do some of that for her and get her to that stage.

Natasha Mitchell: Thank you so much today for giving me all your time. And really it was a day in the life of the Ingersons, so Iīll say goodnight.

Caroline: Thank you, goodnight.

Natasha Mitchell: And a postscript to today -- David is developing a new, light prototype for a child's wheelchair - and Tara underwent major surgery for hip dysplasia this year too....the trials and tribulations continue.
 
Lots of info about agenesis of the corpus callosum on All in the Mindīs website; including a photo gallery of my day with the Ingersons. Head to abc.net.au/rn/allinthemind 

And why not get along to the All in the Mind blog too with your thoughts... I'm Natasha Mitchell. Chow for now.]]></itunes:summary>
      <itunes:duration>30:04</itunes:duration>
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      <itunes:keywords><![CDATA[science and technology,biology,health,brain and nervous system,mental health,disabilities]]></itunes:keywords>
    </item>
    <item>
      <title><![CDATA[2008-12-27 Disembodied brains, culture and science: Indigenous lives under gaze [Part 2 of 2] ]]></title>
      <description><![CDATA[Maori people believe the body is derived from the earth, and returns to the ancestral earth at death&#8212;complete. The flesh, and all its bits, are sacred.  The new Human Tissue Bill in New Zealand has provoked debate over who owns your body at death&#8212;you or your family? The Maori Party argues the legislation is Western-centric and racist. And, a young Maori scientist working with post-mortem brain tissue is breaking new ground, to keep her lab life 'culturally safe', in consultation with her tribe.

Original broadcast: 3/5/2008]]></description>
      <link>http://mpegmedia.abc.net.au/rn/podcast/current/audioonly/aim_20081227.mp3</link>
      <enclosure url="http://mpegmedia.abc.net.au/rn/podcast/current/audioonly/aim_20081227.mp3" type="audio/mpeg" length="14516432"/>
      <pubDate>Sat, 27 Dec 2008 00:00:00 +1000</pubDate>
      <guid isPermaLink="false">2afefca1102ce3bbf7b04f75ac00d363</guid>
      <itunes:author>ABC Radio National</itunes:author>
      <itunes:summary><![CDATA[Maori people believe the body is derived from the earth, and returns to the ancestral earth at death&#8212;complete. The flesh, and all its bits, are sacred.  The new Human Tissue Bill in New Zealand has provoked debate over who owns your body at death&#8212;you or your family? The Maori Party argues the legislation is Western-centric and racist. And, a young Maori scientist working with post-mortem brain tissue is breaking new ground, to keep her lab life 'culturally safe', in consultation with her tribe.

Original broadcast: 3/5/2008


												 TRANSCRIPT: Natasha Mitchell: Natasha Mitchell on ABC Radio National Summer with All in the Mind - your weekly fix of science and the psyche. And this is our best of series from 2008.

It's disembodied brains and culture today, indigenous lives under the scientific gaze. 

In last week's show you heard the incredible saga of a native American man, Ishi, whose brain was removed at death as a scientific curiosity, only to be rediscovered and repatriated over 80 years later. Catch that program on the net. 

Now we're off to New Zealand, the land of Maori and Pakeha, where, as you'll hear, the cultural battle over values and sacred bodies continues to be played out in the parliament and in the lab.

Melanie Cheung: Ko Tarawera toku maunga
Ko Tarawera toku awa
Ko Te Arawa toku waka
Ko Ngati Rangitihi toku iwi
Ko Melanie Cheung toku ingoa. 

I just said Mount Tarawera is my mountain, Tarawera River is my river, Te Arawa as my boat, my waka, and Ngati Rangitihi (which means the descendants of Rangiitihi) is my tribe and I am Melanie Cheung.

It was a big scandal in New Zealand called the Green Lane organ scandal, where researchers just took these children, babies', hearts when they died to do experiments on them, they never told the families and that was really quite tragic and there was a huge inquiry into that.

Tariana Taria: We donīt tamper with the dead, they are sacred on death. All of these incidents bring concern to our people, I mean we are forced as it is to have a post-mortem at death if the coroner insists on it, and we have no choice, we have to agree to that. So while we do have our cultural norms, at the end of the day they are overridden by western values and customs and prejudices.

Melanie Cheung: Itīs very clear that respect is very important of human tissue, and that was one of the questions I asked my supervisor before I took on this project. I said to him, well what do you do with it when youīre finished with it? Because you know itīs part of somebody. I used to work with rats, and when I worked with rats I didnīt have any problems when I was finished with the tissue putting it into biomedical waste. But when itīs part of a human being, somebody who's lived, somebody who somebody else loved, going into a medical waste bin, I have issues with that. And one of the beautiful things about what we do is all that tissue, if it canīt be used, gets put into a special place where it is kept and then is cremated.

Natasha Mitchell: This year the Human Tissue Bill was passed in New Zealand Parliament regulating the collection and use of tissue from dead humans and setting a framework for informed consent. In a moment we'll hear from MP Tariana Turia, co-head of the Maori Party which was strongly against the legislation. 

But first to Melanie Cheung, a Maori scientist studying Huntington's disease at the University of Auckland for her PhD. 

You only need to inherit one critical gene to get this ghastly affliction, which causes a host of disorders of movement, mood, thought and personality, as brain cells die catastrophically. 

Melanie is studying the mitochondria in Huntington's afflicted brain cells, the energy powerhouse of cells, and also involved in cell death and survival signals. But she's breaking new ground to keep her lab life 'culturally safe', as she puts it. 

Melanie Cheung thank you for joining me on ABC Radio National.

Melanie Cheung: Thank you.

Natasha Mitchell: Start with what you were doing in the lab.

Melanie Cheung: What I do in the lab is I get post-mortem tissue donated through the Neurological Foundation Human Brain Bank, cells are grown from the tissue.

Natasha Mitchell: So these are the brains of cadavers that are being used?

Melanie Cheung: Yes, I go through a process of isolating those cells and growing them, thatīs what I do with Huntingtonīs tissue and also with control tissue to compare them and look at the mitochondria.

Natasha Mitchell: And a lot of Huntingtonīs work is focused on mouse brains, so this is quite unusual and unique this work.

Melanie Cheung: Yes, yes it certainly is, in fact, to our knowledge we are the first group in the world that have grown Huntingtonīs primary brain derived cells. Thereīs been some Alzheimerīs grown, Iīve seen thereīs a case of Parkinsonīs so it is very exciting and of course the opportunity to do this because itīs quite a rare technique clearly the availability of post-mortem human tissue doesnīt come around very much. So itīs very, very precious tissue and these cells in fact that we grow are very precious as well.

Natasha Mitchell: So how did working with brain tissue become a culturally challenging&#8212;and in fact a spiritual challenging issue for you specifically as a Maori woman?

Melanie Cheung: Right at the beginning I kind of had this hesitation thinking oh, I wonder what my Maori family are going to say? And I have to say the thought that came into my mind was well maybe I shouldnīt tell them&#8212;and then I thought no, actually I have to tell them. So I did discuss it with my mother and my close family, in particular my Uncle Bob who...heīs sort of like the head of our family, he gave his blessing. But I realised that the next step was going to be to go and talk to our Kaumatua. Kaumatua are the elders within our tribe. So my Uncle Bob took me to go and see one of our Kaumatua, my Uncle Tame, to korero, to talk about what exactly it was I was doing with this tissue, and really I was going to ask him for his blessing.

Now what came about that day&#8212;he was really, really beautiful, he was really excited and very proud that I was about to embark on this PhD. But he said to me, you know, I can give you my blessing, but itīs not really going to mean anything; what you really need is the blessing of the people. And I thought oh, how am I going to get it?

Natasha Mitchell: Was the specific concern about the use of post-mortem brain tissue, or brain tissue per se?

Melanie Cheung: Number one, because it was human and therefore it was the relative, the father of someone who would have loved that person, and you know some of the issues that come up are around respect and the care that is taken of this tissue. Is it just going to be treated like a specimen? We say the human body is tapu and one translation is 'sacred' but that doesnīt even begin to describe what tapu means. Like the Polynesian word taboo, it can also mean 'restricted' and so therefore in Maori culture there are restrictions around what you can do with the human body and what happens during tangi, during funeral services, and that things are all done in the correct way so that that person can be at rest. So certainly for me if Iīm taking part of someoneīs body, their brain&#8212;do we have the blessing of the family, are they going to still be at rest even though Iīve got their brain?

Natasha Mitchell: And slicing and dicing it under a microscope.

Melanie Cheung: Yeah, always remembering that while I am blessed with this precious tissue to do my PhD with, meanwhile thereīs somebody out there whoīs mourning the passing of one of their loved ones.

Natasha Mitchell: The brain is a special organ to all of us, but what special value or sorts of qualities does Maori culture ascribe to the head and to the brain?

Melanie Cheung: So the head is very tapu, meaning sacred, and there are many reasons for this. The major reason is because the head is thought to be the seat of the soul. Traditionally in old times there were some special priests called Tohunga Ahurewa and they during their ceremonies would breathe into sort of like the base of the neck around the head, would breathe part of their mana, part of their spiritual powers onto these new priests. All cultures find the brain very special, thatīs where we think&#8212;although it is the western thought&#8212;thatīs where our feelings come from, and the limbic system. 

For Maori our feelings are kind of more in our puku, more in our stomach, but a lot of things around mana also comes up. Mana, some translations include authority, charisma, dignity, if you can supersede someoneīs mana in battle then youīve won. What would happen during wars was because the head was the most tapu part of the brain way back when when Maori still practises cannibalism, kaitangata, if a chief was fallen from the opposite side that was the part that was consumed.

Natasha Mitchell: I gather youīve encountered some interesting challenges from colleagues within the wider Maori community, academic community, beyond science&#8212;about you being in science and doing science.

Melanie Cheung: Yes I have, and one of the major things was that Huntingtonīs seemed like a white manīs disease, you know why was I interested in it, and that science had been used as a colonising tool. Just really to be aware of those issues that are there as well and to ensure that I am practising my science with dignity and ethics and tikanga Maori methodologies, which is keeping our key values and our self-determination and self-definitions in mind as we are doing it.

Natasha Mitchell: And weīll hear how Melanie is doing that in very specific ways a little later, itīs really quite something. But to a related issue, the Human Tissue Bill just passed in New Zealand. The new Bill allows individuals to nominate that they want to donate their organs at death over and above the collective wishes of their family. MP Tariana Turia is co-head of the Maori Party and they were strongly against the legislation for that very reason. Tariana, thank you for joining me on ABC Radio National.

Tariana Turia: Thank you for giving me the opportunity Natasha.

Natasha Mitchell: From a Maori cultural perspective what happens and what needs to happen to the body at death or after death?

Tariana Turia: Well for our people they believe that your whole being changes at the moment of death. Many of our people are not opposed to live donation but they are opposed to donation at death because of the sacred nature of the body and also that our people believe that you become tapu when you die, in other words you become ancestral.

Natasha Mitchell: Right, explain that a little bit more, because you have this notion of the circle of life as well.

Tariana Turia: Thatīs right, I guess that for many people today we have so many interventions which assist us to live longer. Now for our people there is a far greater acceptance of death. We donīt necessarily think that to continue to intervene to keep somebody alive is necessarily the best thing because after all we are born, you go through life and the one thing you can be assured of is that at one point youīre returned to the earth. You are returned to your earth mother, and so our people accept it as part of life.

Natasha Mitchell: But that transition from the realm of the living to the realm of the dead is a critical one, isnīt it?

Tariana Turia: Itīs a very important time because itīs a very spiritual time&#8212;both for the person whoīs leaving and also for the family who have a role in assisting that person to move from this life into the next realm.

Natasha Mitchell: Youīve been a member of the Health Select Committee charged with reviewing the legislation. But the Maori Party, your party, has come out and said that itīs racist legislation and that itīs in breach of the Treaty of Waitangi. They are strong statements&#8212;why have you said that?

Tariana Turia: Because when you look at the legislation there was only one world view that was considered, the world view of western people. Now in the discussions around informed consent the Maori Party asked for a very minor change and that was that informed consent should be within a cultural context. They wouldnīt agree to it and itīs because of this whole notion that individuals can say whatīs best for them and I have to tell you that Intensivists, who are the people who are dealing with the trauma and dealing with these people who will be perhaps available give organs, are totally opposed to this notion that an individual can say what happens to them at death.

Natasha Mitchell: Look, many folk in New Zealand feel though that the individual should be able to decide to donate their organs, say, via a will that theyīve left, so yours was construed as a minority view.

Tariana Turia: Oh absolutely it was a minority view but it is the view of the indigenous people of this country.

Natasha Mitchell: At the core of this discussion has been the critical question really over who owns a body, who owns a body after someone dies? In your belief system, who does own a body, the individual or the family?

Tariana Turia: The family does, because no person in our culture stands alone, they have a genealogy that links them to their immediate family and also to a wider family; thatīs who matter in the end.

Natasha Mitchell: Why do you distinguish between live organ donation and donation at death?

Tariana Turia: The whole nature of the person changes once they die&#8212;and our people have had difficulty even with the live donations, but as more and more of our people require an organ transplant then families are quite prepared to give a donor organ...

Natasha Mitchell: Like a kidney.

Tariana Turia: ...to somebody who is related to them, so in that way you donīt lose the genealogical link between you and that person. Now a lot of our people are far more accepting where itīs between relatives with a common ancestor.

Natasha Mitchell: Tariana, the Maori community is a diverse community as well and there are undoubtedly Maori who want to be able make their own decision to donate their organs. So how do you balance this, the collective, the traditional and individual desire?

Tariana Turia: By having the informed consent process within a cultural context. Look, youīll always find that families at a traumatic time like that may say no, but once theyīve had a time to talk through it and they understand why their loved one decided to make their decision, sometimes they do come to that decision and it has happened. But generally they are opposed to it and, I need to remind you, so are the Intensivists, because they believe that people are traumatised at a time like this and itīs a very rare thing for a Maori or a non-Maori to make that decision.

Natasha Mitchell: Yes, you have in New Zealand one of the lowest organ donation rates in the world; only 36 people in New Zealand last year provided whole organ donations I gather, and there are over 400 people waiting for organs and some of those would be Maori because obviously Maori health is a concern for people. And so this is the tension here, isnīt it? I guess thereīs a quest to try and get organ donation really on the agenda.

Tariana Turia: Well there may have been 37 donations at death but there were considerably more donations between live donors. The other thing too that we have to take into consideration is that the hospitals can only do so many a year any way, they donīt have the capacity.

Natasha Mitchell: Why is it crucial in terms of Maori beliefs to be buried whole?

Tariana Turia: Well because they believe you come to this earth in a particular form and you should leave it in that form. That debate is being had, though, right now I would have to say, given the western influences and also the fact that our people seek medical assistance from western doctors. So the debate now really is, is it the organs that are really the most important, tissue, or is it really our bones? And when we are starting to look back at some of the historical behaviours of our people itīs very clear that the bones were the most significant, and these things need to be debated and discussed.

Natasha Mitchell: And just in terms of the legislation, where does this Human Tissue Bill stand now that youīve been so involved in debating over so many years?

Tariana Turia: Well itīs been passed. But what gives me confidence about the legislation is that the Intensivits, who are involved in the taking of organs at that point, are not prepared to be told what to do by legislators. And so they will deal with the issues on a case by case basis and if the families refuse then theyīre not prepared to act.

Natasha Mitchell: Then that means they are certainly not obeying the law.

Tariana Turia: Well they believe itīs one thing to make legislation when you donīt understand the situation that people are in at that time. They have to live with their decisions also that they make, they are the ones who see the families in trauma, and based on all that and discussions with the family they make those decisions.

Natasha Mitchell: Tariana Turia, thank you for joining me on the program this week, Iīm very grateful.

Tariana Turia: Kia ora, Natasha.

Natasha Mitchell: Tariana Turia, co-head of the Maori Party and a member of New Zealandīs parliament joining me on ABC Radio Nationalīs All in the Mind&#8212;as are you. Iīm Natasha Mitchell going global on Radio Australia and as podcast, today indigenous bodies and brains under the scientific gaze and with the critical cultural issues raised by the Human Tissue Bill in New Zealand. Maori scientist Melanie Cheung has had to approach her work with post-mortem brain tissue very sensitively, her approach is quite unique.

Melanie Cheung: Well I first of all had to go and talk to my supervisor and say hey, yeah, I went to go and see my elders and guess what, they want us to go visit. I must say I was quite frightened about it, not because Richard is a scary man but that was a pretty big ask. And he was just lovely, he said, 'Wow, that sounds great!' And I was really, really amazed by how many people showed up, maybe 50 or 60 people that came. Which isnīt my entire tribe but it was still quite a big turnout and obviously because the kaupapa was about me a lot of them were my family.

Natasha Mitchell: And your scientific family.

Melanie Cheung: Yes, yes, totally.

Natasha Mitchell: It brought them both together&#8212;and what on earth happened?

Melanie Cheung: The beginning part, the powhiri is part of the formal ceremony that takes place on the marae (sacred, open meeting area) so itīs a welcoming ceremony. But thereīs also more to it than that, thereīs a kind of sussing out from the olden days when you didnīt know if a party was coming to war with you or to be friendly with you. You know during a powhiri if itīs going to be good or a bad hui (gathering, assembly) because you can feel it and right at the very beginning part it felt good so that was just amazing.

Natasha Mitchell: Were there any particular concerns raised?

Melanie Cheung: Yes, we then talked about the specific research, we had this beautiful lady Verna who came along, now the thing about Verna which is very special is that she is Maori and her Pakeha husband, he had Huntingtonīs disease and they gave us his brain. So she talked about her cultural reservations being a Maori and not really wanting to hand over that brain. But it was her husbandīs wish. 

So she had come to visit us at the lab and we had a ceremony with her to acknowledge her husband to do some culturally appropriate Maori things with her for her to be able to accept that part of her husband was with us. When they came to visit us and they have been several times, when they come and they come to the freezer itīs like a gravesite sort of thing.

Natasha Mitchell: The freezer where the brain is?

Melanie Cheung: Yeah.

Natasha Mitchell: So what was the outcome of the assembly with your family and extended family and your scientific family?

Melanie Cheung: Basically we had decided as a tribe that I needed to do some tikanga Maori (Maori customary practice, values and knowledge base) while Iīm in the lab which means that I need to do some customary practices as Iīm working with those brains and that really is more for my own cultural safety so that spiritual things donīt happen to me in a bad way because I havenīt treated that tissue with respect.

Natasha Mitchell: So youīve come up with a whole set of protocol in the lab now that keeps you culturally safe, Iīm interested in that term too, so give us some sort of sense of what happens when you go in and work in the lab with these tissue specimens now.

Melanie Cheung: I do karakia, itīs a prayer, and waiata, a song, in order to cleanse myself from anything spiritual that may happen to me from working with that tissue. Part of the prayer&#8212;itīs an incantation about the beginning of time, about creation, itīs about cosmology really and about what our beliefs are as te korekore, the realm of potential being, te po, the darkness and then te ao marama, the world of light, which we are in currently. 

What I do in this process is to remind this tissue that itīs still in korekore, the realm of potential being and to invite it to te ao marama, the world of light, of living and knowledge, and marama is not just the word for light, itīs a metaphor for knowledge and enlightenment as well. It does sound a bit airy fairy but this is a process that Iīm learning and developing as I go. 

But thereīs one particular lady, Naida Glavish, she is the Tikanga adviser at the Auckland District Health Board, and she talked to me a lot about the spiritual side of things, which was really helpful. She had this guy, he came along, heīd had a liver transplant, you know, the tissue was a good match, the operation went well, everything was perfect. But for some reason he was still rejecting this liver. And heīd been there a couple of days and they were really concerned for his health. So they got Naida to go in and have a talk to him and Naida basically asked him if he had a mihi and a powhiri, a powhiri being a welcoming ceremony and a mihi, a poroporoaki, sort of like a farewell.

Natasha Mitchell: For his liver?

Melanie Cheung: Yes for his liver.

Natasha Mitchell: Right, a farewell for the old liver and a welcome for the new.

Melanie Cheung: Totally. And he hadnīt, so they did, he had a powhiri for his new one and they said goodbye to his old one, and apparently he left the hospital that afternoon. So I know it kind of sounds a little airy fairy but that was a process that he needed to do both culturally and spiritually in order to take up that liver. 

And what I do in the lab, basically I pray, I mourn that person whoīs gone whose brain, a part of the brain has been given to me to grow, and so I basically use some cultural practices from our tangi to say goodbye to that person, to farewell them to Hawaiiki, which is where we go when we die, right?. And then I basically welcome them in for their new function and their new function is that the brain is not going to be thinking, and feeling, and doing all that stuff anymore itīs going to be growing in a dish helping me to do my PhD.

And another part that I do which I feel is really important, certainly for me, is to acknowledge the grief that that family is experiencing at that time because you know Iīm getting the tissue kind of between 6 and 24 hours after the personīs death so itīs very brand new for that family, they are going to be grieving. So thatīs the process and then I have a sing, but itīs not the same song every time.

Natasha Mitchell: How do your colleagues respond to this because youīre working in a very rational, scientistic context; white coats, microscopes&#8212;this is a lab...

Melanie Cheung: Well I think probably some of them think Iīm quite fruity and thatīs okay, itīs not about them itīs about me and what I need to do to do this work and to be culturally safe for myself and culturally sensitive for my culture. If theyīre in the lab&#8212;because it takes a while to isolate the tissue, it takes about an hour and a half and thereīs several incubation periods where you have to incubate it and enzymes and stuff&#8212;if thereīs people in the lab I donīt do it in front of them and thatīs not because Iīm ashamed of it but Iīm not sure it would be appropriate just socially. So yeah, I kind of wait until thereīs a moment&#8212;because I would think somebody else was fruity if they were singing and praying in front of me, you know?

Natasha Mitchell: Melanie Cheung, this is so interesting to reflect on what you do now, because there is a notion of scientific colonialism I mean certainly in the medical sciences over the centuries there are atrocious cases of body parts, brain parts, thousands of skulls being collected and stored in museums of indigenous peoples around the world.

Melanie Cheung: We have these shrunken heads that are all over the world, shrunken heads that were basically traded. Thereīs been quite a few of them repatriated recently but that is another reason why itīs quite controversial that I work with the head.

Natasha Mitchell: Certainly scientific research ethics has come a long way with institutional ethics committees set up in research institutions for people doing work with human subjects or materials. Have you had people going well why do we need a Maori ethic overlay on all this, weīve got all these protocols in place already?

Melanie Cheung: I donīt think anyone would dare because Iīve got such support of supervisors, I have encountered quite a bit of racism because of using these cultural practices.

Natasha Mitchell: What sort of racism?

Melanie Cheung: Well I won an award a couple of years back, I had a colleague tell me that Iīd won the award because they needed a token darkie, basically. She didnīt say those words but that is what she was intimating and I was kind of, I just smiled and I thought, you know, if thatīs what you have to think in order to get by thatīs cool, because I knew that wasnīt why, Iīd done some good work, somebody thought so and theyīd given me an award. You get over those things, I just think itīs not worth dwelling on, I think well I am privileged to be Maori, but my grandmother wasnīt privileged to be Maori when she was at primary school and getting the strap for speaking Maori and all those sorts of things. So weīve still got heaps of work to do.

Natasha Mitchell: Melanie Cheung thank you for joining me on the program.

Melanie Cheung: Thank you very much Natasha.

Natasha Mitchell: Melanie Cheung, breaking new ground at the University of Auckland there - and why not shoot your thoughts about today's topic and any others to the All in the Mind blog where I post regularly. You'll find that along with the email, transcripts, downloadable audio and extra reading material all at abc.net.au/rn/allinthemind. 

I'm Natasha Mitchell and good, great vibes for new year from all of us at ABC Radio National - look forward to your company next week with the dawning of 2009, man, is this century speeding along. Hope itīs a good one for you.]]></itunes:summary>
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      <title><![CDATA[2008-12-20 Disembodied brains, culture and science: Indigenous lives under gaze  (Part 1 of 2) ]]></title>
      <description><![CDATA[The incredible saga of Ishi, Californiaīs last 'wild' Indian, is the stuff of American folklore. Itīs also the quest for a lost brain, taken from Ishiīs tuberculosis ravaged body at death&#8212;only to be rediscovered and repatriated 80 years later. And next week&#8212;a young Maori scientist working with post-mortem brain tissue is breaking new ground, to keep her lab life 'culturally safe'. 

Original broadcast: 26 April 2008.]]></description>
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      <pubDate>Sat, 20 Dec 2008 00:00:00 +1000</pubDate>
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      <itunes:author>ABC Radio National</itunes:author>
      <itunes:summary><![CDATA[The incredible saga of Ishi, Californiaīs last 'wild' Indian, is the stuff of American folklore. Itīs also the quest for a lost brain, taken from Ishiīs tuberculosis ravaged body at death&#8212;only to be rediscovered and repatriated 80 years later. And next week&#8212;a young Maori scientist working with post-mortem brain tissue is breaking new ground, to keep her lab life 'culturally safe'. 

Original broadcast: 26 April 2008.


												 TRANSCRIPT: Natasha Mitchell: All in the Mind on ABC Radio National Summer. Natasha Mitchell with you as we head into the Festive Season...with a series of highlight programs from 2008 over the next month. 

This week and next, disembodied brains and culture, a detective quest and indigenous lives under the scientific gaze.

Orin Starn: Brains were very much the preoccupation and obsession of many scientists and especially anthropologists in the 1800s, and you had back then this notion that&#8212;to put it crudely&#8212;that white people had bigger brains than people from the Third World, than brown people, and that bigger brains meant that they were more intelligent and that that could somehow explain and justify European colonialism and dominance over the rest of the world. So what you had back then in the 1800s was the scientific racism.

Melanie Cheung: All cultures find the brain very special. Thatīs where we think&#8212;although it is the western thought, thatīs where our feelings come from, in the limbic system. For Maori, our feelings are kind of more in our puku, more in our stomach, but a lot of things around mana also comes up. Mana&#8212;some translations include authority, charisma, dignity. If you can supersede someoneīs mana in battle then youīve won. What would happen during wars was because the head was the most tapu part of the brain, way back when Maori still practised cannibalism, kaitangata, if a chief was fallen from the opposite side, that was the part that was consumed. Yeah.

Natasha Mitchell: Melanie Cheung is a Maori scientist working with the brain tissue of people who have died with Huntingtonīs disease. And sheīs breaking new ground on being 'culturally safe' with her science and in her lab. Sheīs developed a range of protocol and prayer as part of that.

Melanie Cheung: Part of the prayer...itīs an incantation about the beginning of time, about creation, itīs about cosmology really and about what our beliefs are as te korekore, the realm of potential being to pour the darkness and then te ao marama, the world of life which we are in currently. What I do in this process is remind this tissue it's still in te korekore, the realm of potential being, te po, and to invite it into ao marama, the world of light and living and knowledge. And marama is not just the word for light, itīs a metaphor for knowledge and enlightenment as well.

Natasha Mitchell: And Melanie will be featured in next week's show. Thatīs the present but her approach is driven by the lessons of a difficult past and so today to the extraordinary legend of Ishi dubbed Americaīs last `wildī Indian and a phenomenal quest over 80 years later for his missing brain, rumoured to have been excavated from his tuberculosis-ravaged body at death.

Orin Starn: Reading: An Oroville elder, Virgil Logan had told the Maidu that they nothing to fear from Ishiīs brain it was just inert matter heīd explained since the spirit had long ago departed the body for the Milky Way. Even so we were all apprehensive for different reasons. None of us had ever seen a human brain before, much less a pickled one so we had no idea what to expect. And this was the severed body part so long sought, the last fleshy remnant of suffering and survival that belonged to the wild man of Oroville&#8212;the lost brotherof the legend.

A mound covered by a white cloth lay on the plastic wood conference table, Joe lit another plug of wormwood, he circled the room with a turkey feather wand and brushed smoke over each of us to purify and protect against any danger. He also smudged and shook a deer hoof over the brain itself, shrouded still in the middle of the table. Joe instructed Art to remove the white cloth. He did so, revealing a glass jar about the size of a soup pot, something wrapped in a cheesecloth sack was floating in a cloudy bath of ethyl alcohol inside the jar. We all stared at it and there was quiet in the room broken only by the air conditioner's low metallic hiss. When I raised my head to glance around, I found my companions distraught. Several were lifting at their glasses to wipe away tears. The sight of the brain on the plastic conference table brought the emotion of violation and sadness welling to the surface. Historian Peter Brown speaks of the inverse magnitude between the tiny bone shard relics of martyred saints and the huge holy power escribed to them by medieval Catholics. As small and forlorn as it looked in the jar in the middle of the large table, Ishiīs brain possessed the similarly outsized symbolism for these modern day Maidu. In this case embodying the destruction and suffering unleashed upon their people.

My name is Orin Starn I am a professor of cultural anthropology at Duke University in North Carolina. I grew up in Berkeley, California near San Francisco and every little kid in the bay area there learns about the story of Ishi, this wild man who hid out in the mountains of California for decades and decades, finally was captured and brought to live in San Francisco. Small boys especially love the idea of smoke signals and of making their own bows and arrows, and so Ishi was something of a hero for me and I was always curious to learn more about his story, what his life had been like, both in the wild and when he came out to San Francisco.

Reading: It was the end of summer in 1911. A solitary Indian left his homeland in the foothills of Mount Larsen as a boy he had seen his people massacred.

Natasha Mitchell: The circumstances of how he came to be the last member of his tribe and also the circumstances surrounding when he surfaced in 1911 really are a contested story still, arenīt they? What essentially do we know about that first contact?

Orin Starn: Well what happened, in 1849 gold was discovered in California and people flooded in around the world trying to make their fortune in the mountains of California. And during that time many Indian tribes were exterminated by these new miners who were moving in and Ishiīs tribe was called the Yahi, it was a small tribe up in the mountains of California. And they managed to survive this period and they hid away in a canyon in the mountains for more than 40 years. For all of those years in the late 1800s in the United States you had this small invisible nation within a nation that nobody knew the existence of.

Natasha Mitchell: And really it came down to the last four, didnīt it, his mother, his uncle and his companion?

Orin Starn: Yes, in 1908 four Yahi Indians were sighted briefly, and then three years later three of them had apparently died and Ishi was captured trying to steal a bit of meat from a slaughterhouse in a town not so far from where his people had been in hiding.

Reading: At twilight the Indian reached the outskirts of Oroville, California. Art Kessler was working in a slaughterhouse when he heard dogs barking, he saw a man emerge from the darkness. [Art Kessler]: I grabbed at the stick, I pushed him over.

Orin Starn: He was starving he was emaciated, he was the last survivor of his people, he was the last person on earth who spoke the Yahi language and knew Yahi traditions and myths. So for him to enter into the white world and then to be brought to San Francisco was like being taken to another planet&#8212;he had never seen sky scrapers, heīd never seen cars, he didnīt know of the existence of electricity or running water. And somehow he managed to make a life for himself in those five years in San Francisco.

Natasha Mitchell: Tell me about Alfred Kroeber, heīs an acclaimed anthropologist at the time at the University of California&#8212;as it turns out heīs Ursula Le Guinīs father, who was on the network last week. What relationship did he come to have with Ishi?

Orin Starn: Well Alfred Kroeber was one of the most famous anthropologists of the time and he was in effect Ishiīs legal guardian and protector in San Francisco. Kroeber brought Ishi to live in the anthropology museum that he directed and Kroeber was a very reserved man in many ways but clearly developed a real affection and even love for Ishi. Heīd take Ishi over to his house across the bay in Berkeley to have dinner. At the same time though Ishi was for Kroeber a great scientific discovery and he also spent much of his time trying to catalogue Ishiīs myths, taking measurements of his body because Ishi was viewed as a kind of strange specimen for being the last surviving Yahi

Natasha Mitchell: Ishi effectively became a living museum curiosity in his first six months of living in the San Francisco Museum.

Orin Starn: Well you can imagine the headlines in the San Francisco newspapers in 1911 reported that a wild man had been discovered out in the wilds of California and that you could come up to the anthropology museum, and there Ishi in the auditorium of the museum would sit on Sundays giving demonstrations of Yahi arts for the crowds of people that would gather there. He was a master at stonework.

Natasha Mitchell: Twenty-four thousand people visited that museum in the first six months of its life.

Orin Starn: Yes, it was the thing to do on Sundays. There was also an idea that the anthropologist had that native American cultures deserved respect&#8212;and remember that weīre talking about 1912/1913&#8212;was something of a revolutionary idea in American society because you then very much had the idea that Indians were inferior, were savages, were blood thirsty, were less than white people. So it was part educational experience and part carnival.

Natasha Mitchell: Ishi became very ill with tuberculosis, as did so many native Americans because of course they didnīt have the immunity. He died in 1916 and the circumstances around his death really have carried on into the whole next century and into this century.

Orin Starn: Ishi died in 1916 of tuberculosis, as you say. Ishi had made it quite clear&#8212;and he did speak some English by 1916&#8212;that he did not want his body to be dissected, that he didnīt want any of his body parts pickled and studied by scientists...

Natasha Mitchell: I mean from a native American perspective why would that especially be the case?

Orin Starn: Ishiīs people, the Yahi, believed that it was dangerous both for the living and the dead for the body of dead people to be handled very much after they died. The body should be buried as quickly as possible, in some ways parallel to Muslim traditions of burial, and that that would allow the bodyīs spirit to get on to the next world and that this would also be less dangerous for the living, for those that were left behind. So the practice of autopsy, of putting a body out on a table and cutting it open and taking out the body parts, would have been anathema to Ishi.

Natasha Mitchell: So how was it that in fact an autopsy came to happen on Ishiīs body?

Orin Starn: Alfred Kroeber was away in New York when Ishi died. What appears to have been the case is that another acquaintance of Ishiīs, a doctor named Saxton Pope was very interested in Ishi and very much wanted to dissect Ishi to learn&#8212;as Pope once put it, to learn everything about him. Pope felt that it was his duty as a scientist to record just how much Ishiīs lungs weighed and what the bone structure of his body was. And so because Kroeber was away and an autopsy was conducted...

Natasha Mitchell: Ironic though isnīt it because Saxon Pope actually was observed to be a very good friend of Ishi, they did archery together, they were mates.

Orin Starn: Thatīs right, Pope and Ishi spent lots of time together shooting bows and arrows, going off on hunting expeditions. And I think with Pope too there was he mourned and grieved for Ishi&#8212;during this time Kroeber who was in New York gets wind of the fact that an autopsy may be conducted&#8212;and Kroeber again is a very Victorian restrained man emotionally in most ways, but he writes a very angry telegram where he says `If anybody talks about conducting an autopsy of Ishi in the interests of science then say for me that science can go to hell'. But it does no good and an autopsy is conducted on the body.

Natasha Mitchell: And what happened to Ishiīs remains?

Orin Starn: Well this was the big mystery. We knew that the autopsy had been conducted and we knew that at least part of Ishiīs body had been cremated and that his ashes had been put in an Indian pot that was then brought to a cemetery just south of San Francisco. But the mystery was whether the brain had also been cremated or whether something else had happened to the brain; whether perhaps it had been put in a jar and preserved or what exactly had happened to it.

Natasha Mitchell: Well this was only a rumour and you only got wind of this rumour&#8212;I mean letīs fast forward to 1997&#8212;you come to meet Art Engel, a native American man from a different tribe to Ishiīs original tribe but heīs on the campaign for the repatriation and reburial of native American remains housed in museums. Tell me about that meeting and that rumour about Ishiīs brain.

Orin Starn: Well I started digging around in California and I heard that members of a native American tribe near up where Ishi had lived were searching for Ishiīs remains. They felt that it was wrong, Ishiīs ashes had remained in San Francisco, they felt that Ishi had grown up and lived most of his life in his homeland in the area thatīs called Deer Creek and thatīs where he should be buried. But... 

Natasha Mitchell: I mean Art really described Ishi as being captive, as prisoner of the scientists&#8212;quite a sensible thing to say in some respects because Ishi existed in an era when a pygmy man from the Congo was put in a monkey house at the Bronx Zoo I gather. I mean this was atrocious.

Orin Starn: Indeed, and Ishi was not a prisoner in San Francisco, I mean he would go to the movies and go walking on Fishermanīs Wharf...but itīs true that he was captured, brought to live in San Francisco. Art Engel, who was a Korean War veteran, a trucker who feared the worst about Ishiīs remains, he had heard a rumour&#8212;and I never found out exactly where this rumour originated&#8212;that in fact Ishiīs brain had never been buried with the rest of the ashes but instead it had been pickled, put in a jar and that that jar was in a museum or a hospital somewhere in the United States. And at the time I thought that was something of a crazy story, but as it turned out Art Engel was exactly right, Ishiīs brain had indeed been kept in a jar, and it was indeed forgotten on a museum shelf all the way across the country in the Smithsonian Institution in Washington DC

Natasha Mitchell: Anthropologist Orin Starn is my guest this week on ABC Radio National, globally on Radio Australia and as podcast. Iīm Natasha Mitchell&#8212;we're on the hunt for the missing brain of a man described in 1911 by a San Francisco newspaper as the greatest anthropological treasure ever captured. Really what unfolded was the massive detective investigation for you wasnīt it? I mean where did you turn to and where did the first real clue about Ishiīs missing brain reveal itself?

Orin Starn: Well I began to ask around whether older anthropologists who had known Alfred Kroeber, whether they knew anything about the truth of this rumour that Ishiīs brain and been pickled and preserved. And most of what I heard was that no, this was false, that Kroeber loved Ishi and that he certainly would have ensured that Ishi was buried whole. But for me the break in the story came when I was searching through a set of old papers in the archives at the University of California at Berkeley, boxes and boxes of yellowed old correspondence searching for&#8212;I wasnīt sure what. And all of a sudden there was a file that had a set of letters from Kroeber and one of the first words in them was 'I plan to send off Ishiīs brain' and a whole discussion of&#8212;what it turned out to be was the correspondence between Kroeber and the Smithsonian.

Reading: December 30, 1916
Referring to your letter of October 27 addressed to Dr Hrdlicka I beg to say that the National Museum will be very glad to receive the brain of Ishi, 

January 1917.
I hardly need to say that we shall be very glad to receive it. ... The brain should be packed in plenty of absorbent cotton saturated with the liquid in which it is preserved. The whole should be enclosed in a piece of oiled cloth or oiled paper. The package should then be laid in a moderate sized box with a good layer of soft excelsior all around it. In that way it will doubtless reach us in good condition. Ales Hrdlicka.

Natasha Mitchell: Well he was an interesting entity, wasnīt he, Ales Hrdlicka because he in fact was turning the Smithsonian into whatīs been described as the largest Indian necropolis in the world, I mean he was one of the contributors to that; he was collecting brains from all manner of species.

Orin Starn: Collecting brains became the obsession of Ales Hrdlicka, and his idea was that he would collect brains from people all around the world, so not just native Americans but Europeans, and people from Ghana and Mongolia and that he would study these brains and somehow unlock the mysteries of human evolution and human culture. Well now we know in fact that brain size doesnīt correspond to intelligence at all. And Hrdlicka, he was enough the scientist as he began to collect these brains from around the world to figure out that these theories about white people having larger brains didn't hold water, because he was finding that some of the brains that he got from Africa were actually larger than some of the brains he got from Sweden. So Hrdlicka was realising that this brain science of the 19th century was junk science. By 1916 when Alfred Kroeber sent him Ishiīs brain, he was actually already losing interest in his brain collection; in fact Ishiīs brain was one of the last ones that he collected for the Smithsonian.

Natasha Mitchell: Remnants of that collection still exist though in whatīs called the Smithsonianīs wet collection, an extraordinary sounding collection, very surreal, almost macabre.

Orin Starn: Itīs a bit of a macabre story. What happened is Hrdlicka lost interest in his brain collection, was that you had in the Smithsonian some 225 jars each one with a human brain that nobody was paying attention to. So one of the curators told me that in fact some of the solution dried out of some of the jars so the brains shrivelled up and were destroyed and then had to be gotten rid of. But finally what happened in the 1980s is the Smithsonian built a new facility, this fantastical almost science-fiction collection of pickled animals, animal parts and exotica from all around the world. So for instance there was a collection of pickled rhinoceros foetuses, there was a collection of pickled dolphins; and for the remaining brains, those that hadnīt dried up and had to be disposed of, they built these three large, stainless steel tanks, and they put about 20 or 30 brains in each of these tanks and there like strange exotic tropical fish the brains floated in those tanks for the last years of the 20th century.

Natasha Mitchell: At this point itīs still not obvious...I mean youīd found the correspondence to say that Ishiīs brain was sent to the Smithsonian way back when in 1916. But it wasnīt obvious that it still existed. In fact there were rumours that it had been destroyed in an effort I guess to circumvent a PR nightmare for the Smithsonian.

Orin Starn: The idea that this beloved, iconic native American had had his brain cut out against his will, that it had been sent to the Smithsonian, the nation's official museum, and that the Smithsonian had kept it all of these years without making any efforts to see that it was returned to tribes in California&#8212;all of this posed a problem for the Smithsonian. The first thing I heard from the Smithsonian was that in fact they had never had the brain of Ishi in their collection. But as the native Americans pressed for the truth, in fact the Smithsonian did further investigation and officially acknowledged that they did indeed have the brain of Ishi in their collection and that they would make a good-faith effort to return it to modern day native Californians for a proper burial.

Natasha Mitchell: And there it was, item No. 60884 in tank 6 of the wet collection with 32 other brains.

Orin Starn: Like many people I had never seen a human brain before, but beyond that the symbolism attached to Ishi who in a way many of us feel as if we know, if only a little bit, the fact that his brain had been cut out against his will made it a pretty emotional and charged moment for people.

Natasha Mitchell: One person has described this whole story as in effect Ishiīs confinement to a formaldehyde reservation, I found that very striking.

Orin Starn: Itīs true, the United States was created in a process that meant confining Americans to reservations on which millions of native Americans died or war and disease. Scientists and anthropologists too often instead of speaking out about some of the injustices of that time instead were simply interested in a very narrowly scientific way in studying native Americans and making specimens of them in collecting their bones and their body parts. So I think that anthropology has learned many of the lessons of that time. And I should add also that in some ways the work that the anthropologists were doing was important. And nowadays young native Americans who want to learn more about their past often consult the books written by Alfred Kroeber and those other anthropologists of the early 20th century.

Natasha Mitchell: Orin Starn an irony at the end of this story is that it was in fact white scientists that ultimately decided where Ishiīs brain and his other remains, his ashes, were to be repatriated. Art Engel and his tribe ended up not being the ones that presided over the burial.

Orin Starn: Native American tribes can request the return of sacred objects as well as bones and other human remains but itīs the Smithsonian that retains the power to decide to grant those requests or not. And in the case of Ishi it was a very complicated story because Ishi was after all&#8212;and this was part of his legend the last of his tribe, the last Yahi. So if youīre the Smithsonian and you want to return his brain, who exactly are those descendants if there are no more Yahi. 

What they ended up finding was that the group called the Maidu that Art Engel was a part of were not the closest relatives. In fact two other tribal groups, the Redding Rancheria and the Pit River Tribe, had a better claim to&#8212;if not descending from Ishi, to at least a kind of kinship to his tribe and to his people. And so the Smithsonian decided to return Ishiīs brain to those two groups, and left Art Engel, the man who had begun the campaign to learn the truth about Ishi out in the cold.

Natasha Mitchell: Even if a huge enterprise and museum that the Smithsonian is, even though it has a repatriation office and is committed to repatriating contested remains, this itself is a contested phenomenon amongst scientists, isnīt it, because I mean these are incredible scientific instruments, bones and body bits from ancient times with DNA residue&#8212;that tells us about all our heritage.

Orin Starn: Well whatīs happened over the last 20 or 30 years is the repatriation has become the law of the land in the United States and this reflects the new power that native Americans have in this country, partly tied to the new money thatīs coming in from the casinos. What you now have is museums that are obligated to return bones and sacred objects, and indeed this has become a matter of much controversy. But matters get much more complicated in a case say of Kennewick man, the five- or six-thousand-year-old skeleton who was found in the state of Washington in the United States a few years ago. There you had Indian tribes like the Umatilla saying Kennewick man is our ancestor, he should be reburied and not studied; there should be no DNA or other scientific examination of him&#8212;squared off against the archaeologists and anthropologists saying wait a minute, this is 5,000 years ago, we need to be able to study him as one of the earliest skeletons ever found in the Americas. And these matters, as they often do, end up in the courts and in the case of Kennewick man the federal judiciary has decided that in fact the scientists should be allowed to study Kennewick man.

Natasha Mitchell: Did you get too close to this material, did you lose some of your objectivity as an anthropologist?

Orin Starn: You know itīs hard...I pause in answering that question because anthropology always involves emotions and making friends and learning about new things and we always get very close to what we study. Ishi was somebody that Iīd grown up with that Iīd known his story since childhood, and I always did feel a bit discombobulated, a little bit at sea in trying to find a way to think about and to write about the terrible things that had happened in my own state in California. Things that Iīd never known about when I grew up there as a boy.

Natasha Mitchell: Well thank you for sharing this, itīs an extraordinary story and it will stay with me for many more years yet. Professor Orin Starn thank you.

Orin Starn: Thank you so much.

Natasha Mitchell: Orin Starn speaking to me from the studios of Duke University, where he's Professor of Cultural Anthropology. Golf and American culture are his current research interests. A light relief I imagine...His book Ishi's Brain: In search of America's Last 'Wild' Indian is an engrossing read, published by W W Norton and Company. 

Next week we'll pick up the theme again with a Maori scientist confronting the cultural sensitivities of her lab's brain research. 

You can shoot your comments to All in the Mind blog anytime. You'll find that along with our email, transcripts, downloadable audio and more at abc.net.au/rn/allinthemind 

Iīm Natasha Mitchell - good luck with that Christmas pud.]]></itunes:summary>
      <itunes:duration>30:04</itunes:duration>
      <itunes:explicit/>
      <itunes:keywords><![CDATA[health,brain and nervous system,community and society,indigenous (other peoples),race relations,science and technology,anthropology and sociology]]></itunes:keywords>
    </item>
    <item>
      <title><![CDATA[2008-12-13 Untangling the talk ]]></title>
      <description><![CDATA[What humans say to each other is perplexing at the best of times.  But what if all you have is sight, no sound? Deaf people 'see' language through signing and lip-reading -- with surprising brain scan results. Forensic linguists often only have sound, no sight -- working with grisly sound recordings from murder scenes and covert criminal deals, to sleuth for suspects. Tune in to untangle some tricky talk.]]></description>
      <link>http://mpegmedia.abc.net.au/rn/podcast/current/audioonly/aim_20081213.mp3</link>
      <enclosure url="http://mpegmedia.abc.net.au/rn/podcast/current/audioonly/aim_20081213.mp3" type="audio/mpeg" length="14514048"/>
      <pubDate>Sat, 13 Dec 2008 00:00:00 +1000</pubDate>
      <guid isPermaLink="false">ae19919a3628c5fafddacc634f14cd2a</guid>
      <itunes:author>ABC Radio National</itunes:author>
      <itunes:summary><![CDATA[What humans say to each other is perplexing at the best of times.  But what if all you have is sight, no sound? Deaf people 'see' language through signing and lip-reading -- with surprising brain scan results. Forensic linguists often only have sound, no sight -- working with grisly sound recordings from murder scenes and covert criminal deals, to sleuth for suspects. Tune in to untangle some tricky talk.


												 TRANSCRIPT: Natasha Mitchell: Natasha Mitchell joining you now on ABC Radio National broadcast and podcast across Australia and worldwide, welcome to All in the Mind. Today we are untangling tricky talk and, boy, does it need untangling sometimes.It actually turns out
Love is like a yo yo
Sometimes up, sometimes down...
The new direction is always at random
And when he sucks their blood
Itīs not dust
Itīs a windy and a moist world
Iīm sure thatīs true because many other people think the same...
Nobody knows it better...
So hold on, youīre saying that (animal shriek)
This animalīs a pregnant female.
Yes indeed, making sense of language can be a challenge. But what if all you have to make sense of what someone is saying to you is sight, no sound at all. As in the case of a deaf person using lip-reading and sign-language to help them effectively `hearī by eye. Some compelling news there from brain scans in just a moment.

But what if, on the other hand, you only had sound, so, no face talking to you to read and interpret, just a voice and an obscure, poorly recorded one at that. Thatīs the raw material for forensic linguists.

Paul Foulkes: Itīs particularly with the spread of mobile phones and mobile phone technology more generally that we get more and more recordings that do have value in forensic cases.

Natasha Mitchell: Which means that the police are calling on the expertise of forensic phoneticists  like Dr Paul Foulkes more and more. Phonetics is all about dissecting the sounds that make up human speech. But forensic phonetics gets into some very murky stuff indeed. Itīs an extremely specialised science&#8212;Paul is in the Department of Language and Linguistic Science at the University of York and also consults for a forensic speech and audio lab called JP French and Associates, they work with some extraordinary cases.

Paul Foulkes: So increasingly the police around the world are monitoring drugs gangs and suspected terrorists and they use mobile phone technology to place covert recording devices so that they can monitor the speech thatīs going on amongst people connected with the investigation. Also general members of the public are receiving things like threatening voice messages which they can record on their mobile phones and we get some really rather harrowing cases on a pretty regular basis where people are actually recording their own deaths on their mobile phones. So they may have either been in an accident, or been attacked and they call up the emergency services and perhaps they are continuing to be attacked while the line is still open and we get a lot of cases like that where perhaps weīre asked to try and determine whatīs being said in the background. Not necessarily the personīs speech who owns the phone but whatīs going on in the background; can we say anything about the person who might be attacking them, or whatīs being said, or indeed are they being attacked, or is it something accidental thatīs going on.

Natasha Mitchell: Well before we come to the tools that you use for that; in the second World War certainly around and after the second World War there was quite a concerted effort to develop a sort of finger print technique for voice, a sort of voice print, wasnīt there?

Paul Foulkes: Itīs somewhat unfortunate that some rather excessively strong claims were made about the value of the technology. The technology is still in use today itīs a standard part of all phonetic undergraduate and graduate courses where we can use software programs now to analyse speech, or indeed any kind of sound, examine its component parts...and itīs an extremely valuable tool. 

The problem is that 40 years ago people got over excited by this. Because they could see speech on a computer screen or on a print-out, it was tempting to look at the visual image of speech as being something like a finger print. These days we know that thatīs not the case. A personīs voice is very, very changeable. As all of your listeners will recognise, our voices can be very different first thing in the morning to last thing at night, or when we have a cold, or when weīre speaking on a telephone with traffic in the background we elevate the voice, we sometimes whisper, we sometimes shout and all of these sorts of things. 

Our voices are very, very malleable and what makes a voice distinctive and characteristic is no one feature; itīs a whole combination of different features which sometimes are not present at all. They come and go, but unfortunately there is no single feature in anybodyīs voice which is like a finger print by which we mean something that is always there, permanently there, indelible, unchangeable. And the worry is that when a member of the public is sitting on a jury they might have unrealistic expectations of what it is that we can do in terms of our forensic analysis.

Natasha Mitchell: But itīs amazing, just with your own professional understanding of speech as a linguist you can actually strip out all sorts of meaning, canīt you? I mean the regional, social, educational specificities and backgrounds...

Paul Foulkes: Absolutely yes. A voice contains an awful lot of information about the speaker. We can visualise speech on a computer screen. We could, for example, measure the duration of sounds, how long they are. We can measure the frequency components of sounds, we can measure the intensity, the loudness and so on, and the pitch of the voice and all of these kinds of things. 

So most obviously itīs usually possible to tell very quickly whether a speaker is male or female by listening to the overall pitch of the voice. But we all know men with high voices and women with low voices and it is possible that there is overlap even in something as apparently obvious as the pitch of the voice.

On the other hand our voices do say an awful lot about us, so you can tell very clearly that Iīm not Australian right now, you might if youīre good at it be able to tell me whether Iīm from the north of England or the south of England if you know which vowels to listen for. So I say 'barth' and 'coop' not 'bath' and 'cup', so that makes me a northerner, not a southerner&#8212;although Iīm obviously being posh while Iīm speaking on the radio. 

We contain reflexes in our voice of our educational backgrounds, of our specialist knowledge, of sometimes our ethnicity, or whether we speak any other languages. People who have any kind of speech pathology will of course be showing that, be it a lisp or a stutter or something like that.

Natasha Mitchell: Where did linguistics fit into the Yorkshire Ripper case?

Paul Foulkes: Ah right, the Yorkshire Ripper case. That of course was a serial killer in the 1970s and after 11 murders the police received two letters and a tape recording apparently from the killer and of course they took them very seriously.[Jack the Ripper pretender]: Iīm Jack, I see you are still having no luck catching me. I have the greatest respect for you, George, but Lord, you are no nearer catching me now than four years ago when I started. I reckon your boys are letting you down George, you canīt be much good can you. I warned you in March that Iīd strike again. See you soon, bye.
And the letters and tape were given to former colleagues of mine at the University of Leeds, Stanley Ellis and Jack Windsor Lewis, and they were asked to try and identify where the talker came from. It was very clear that he had a north east of England accent and Stanley had worked for several years on the survey of English dialects. He travelled around the north east trying to narrow down the specific area where the person on the recording came from and he determined that this was not the main city in the north east, which is Newcastle upon Tyne, but the city thatīs just south of there, Sunderland, based on analysis of vowel and consonant pronunciations that were used by the speaker. And from his knowledge about dialectal differences he was able to determine that it was much more likely to be south of Newcastle that Newcastle itself.

So one thing that the speaker in the recording did was drop his aitches, which is pretty common in British English. So instead of wearing a hat on his head, he would wear an 'at on his 'ead and thatīs known to have a northern limit of just below Newcastle. So by analysing what we think of as component parts of speech and language, so individual vowel and consonant pronunciations, he was able to triangulate if you like the approximate regional provenance of the speaker.

Natasha Mitchell: Now that doesnīt tell you whether the person sending these tapes and letters was in fact not the Yorkshire Ripper, though, does it?

Paul Foulkes: No of course not, no, no. All that Stanley was able to do is offer his best judgement as to what area of the country this person came from. As it turned out later the tape and letters had actually become from a hoaxer and not the real killer at all and he killed again two more women. The hoaxer actually remained at large for believe it or not 26 years, although the recording had been played in football grounds, and on the radio, and on the TV, and Stanley had travelled all over the north east playing it in working man pubs and clubs and so on; no one seemed to recognise the voice. And it was only 26 years later, it was in 2005 purely by chance a man named John Humble was identified through DNA profiling. The managed to extract some DNA from the letter, I believe, from the envelope, and was sentenced to eight years for perverting the course of justice.

Natasha Mitchell: The not so humble John Humble. On ABC Radio Nationalīs All in the Mind Iīm joined by linguist Dr Paul Foulkes from the University of York, and he gets to play detective. Youīd be amazed where the forensic talents of a linguist are needed.

Paul Foulkes: Just a couple of years ago we did a case in Ghana which was the first case of its kind in the country where a recording was part of the evidence.

Natasha Mitchell: What was the case?

Paul Foulkes: It was a very complex drugs case, to this day Iīm not quite sure who did what to who and when but the material we had was a one hour recording where there are five people at a meeting at a chief of policeīs house and they are discussing various drug cases. All five people acknowledged that they were there at the time but all of them denied saying anything that was in any way dodgy. So our job was really to try and work through the recording and work out who was saying what. 

Now that might sound rather simple but please bear in mind that the recording itself was made probably on a dictaphone in someoneīs pocket. All five people are engaged in a blazing row for most of that hour, all shouting at once and shouting in at least two and probably three different languages. And on top of that the whole thing is being played out in a garden where there are workmen in the background setting up scaffolding and hammering. 

So working through noisy recordings in at least two languages and the English part of that was very heavily accented Ghanaian English, it was a big old mess and we recruited an excellent Ghanaian linguist to come and help us to decipher precisely what was being said and then to try and work out as best we could who was saying which words.

Natasha Mitchell: And you managed to do that?

Paul Foulkes: We did it pretty well I think. It turned out to be a 150 page transcript but it was received as evidence in Accra in Ghana and two of the concerned were found guilty&#8212;not just on the basis of what weīd done of course, but through various evidence about their involvement in some of these drug cases.

Natasha Mitchell: A very new thing has been the launch of whatīs been dubbed voice risk analysis software, as a sort of voice lie detector in telephone conversations. And this week for example itīs been reported that councils in the UK are trialling the system to dig out people cheating social security or other benefit schemes. What do you make of this development?

Paul Foulkes: I find it rather worrying in some respects to be quite honest. These devices work on analysis of what they refer to as micro tremors in a voice, that is, very, very tiny fluctuations in a voice and they argue that those fluctuations in the voice offer a direct insight into intention or truthfulness, sincerity and brain activity in general they say. But there are several independent tests that have been carried out, one of which was on behalf of the FBI, and their independent tests were at the very best inconclusive and at worst they showed that these things worked at a round about chance level.

Natasha Mitchell: So they suggest that they are actually analysing what they dub the emotional structure of whatīs being said to see if someone is lying. So they set them up in a conversation, they ask some fairly innoxious questions to get a sort of neutral recording of the voice and then they get a little bit more heated and pointed in their questioning and then they compare the two responses to see whatīs changing in terms of the personīs voice. And from that they say they can ascertain whether they might be lying or not.

Paul Foulkes: Yes, the same technology is now being used at Moscow airport as an anti-terrorist measure, and from the website of the company that produces the tools it seems that people are asked between three and five questions and an immediate analysis is made which purports to tell whether or not someone is a security risk. Well from everything I know about speech and language thereīs no straightforward relationship between any feature of a voice and whether someone is telling the truth or not. So the fact that these things are being used in this way without as far as I can see adequate testing is I think a very worrying development.

Natasha Mitchell: Well I must say that any application of science to forensics is always rather seductive and interesting, thanks for joining us on the program this week.

Paul Foulkes: Thank you very much.

Natasha Mitchell: And Paul Foulkes and colleagues at the University of York have just set up the worldīs first postgraduate course in forensic phonetics. 

Well from untangling tricky talk where there is only sound, to a case of no sound at all. Emeritus Professor Ruth Campbell and colleagues at DCAL, The Deafness, Cognition and Language Centre at University College London, have recently launched a forensic speech reading course to utilise the expertise of the deaf community in forensic cases. Like the interpretation of suspect conversations captured on closed circuit TV footage for example.

So what makes for a good lip-reader or speech-reader as they pick up on all sorts of subtleties like the shapes and movements of the tongue and lips, and the head and body?

Ruth Campbell: We found in one of our studies that in fact the good lip-readers, these are deaf people who are very good lip-readers, theyīve got more sensitivity to visual motion generally when we test that in the lab just using some images that can move randomly across the screen, itīs the good lip readers who can pick up on that. And the other things that come into play of course are an ability to hold on to what you see, so some level of working memory skill, and good language skills generally are absolutely necessary in order to make your guess fit what you see in front of you.

Natasha Mitchell: People talk about language being made up of little individual units, maybe a vowel or a consonant, what are called phonemes, but in lip-reading thereīs talk of a viseme and this is where things get incredibly complicated because they are very difficult to distinguish between. Tell me about those.

Ruth Campbell: Well visemes if you like are kind of those phonemes that you can distinguish from each other by eye. Some of them you can distinguish very readily like I might put a thread in a needle but my friend is called Fred. Now I had to put those in a sentence context because although they are really easy to distinguish by eye, Fred the name, has got a F in it and thread has got a th in it, they are really rather hard to pick up by ear and I wouldnīt be surprised if I just said Fred, thread some of your listeners wouldnīt be able to pick up that distinction. But there are far more phonemes that you canīt easily distinguish by eye.

Natasha Mitchell: Well if we take a word like 'fudge' for example and a word like 'very', the 'v' and the 'f' must be very hard to distinguish visually.

Ruth Campbell: Absolutely, and the same with 'p' in 'pick' compared to 'b' in 'brick' or even 'm' in 'mick'. 'P', 'b', 'm'&#8212;all very hard to distinguish visually. But good speech readers can sometimes do it, they can see that cheek puff that you use. One thing thatīs quite good in English is that most of our vowels look the way they sound. Itīs not true in other languages of course. In French youīve got vowel sounds like 'eu', and a 'eu' is made with a mouth pattern thatīs like 'oo' but your tongue is making a pattern in the mouth of 'ee'. So itīs an 'ee' with an 'oo' front to it.

Natasha Mitchell: Tricky, how do French lip-readers go?

Ruth Campbell: Oh yes, theyīll have trouble with that one.

[Pink Panther 2006: 'I would like to buy a hamburger': Inspector Clouseau and the dialect instructor...]

Natasha Mitchell: Look I gather itīs only been really in the last two decades that signed languages were effectively classified as real languages for linguistic investigation?

Ruth Campbell: Yes, thatīs absolutely true thanks to a lot of very hard work from scholars establishing that sign language is a well structured language, as well structured as any spoken languages and wherever there are deaf communities sign languages emerge. And scholars have characterised how they develop, how they are structured. And they differ from one deaf community to another; they can even differ within the same geographical areas, so you get all sorts of things happening in signed languages that you might not expect.

Natasha Mitchell: What did people think of sign language before it was considered a real language by the linguistic community?

Ruth Campbell: Well I think the general impression&#8212;and itīs still quite a strong lay impression&#8212;is that these are just similar things are non verbal communicative gestures and that if you want as a hearing person to communicate with a deaf person youīll just use the sorts of movements of your hands and face that you might do if you were trying to communicate with somebody in, say, Africa whose spoken language you didnīt know. What my husband calls desperanto, what you use when you are trying to communicate in a language that you havenīt got access to.

Natasha Mitchell: You know Stephen Pinker describes language as the 'stuff of thought', that language is so central to the way we think. And I wonder then if that means that there are differences in the way people think when they use sign language as distinct from spoken language?

Ruth Campbell: People are really starting to try and tease that out now. Itīs remarkably difficult to do. What you might think are real differences between the way that deaf people who use sign language think and hearing people who use speech think are very hard to pick apart. But there are some indications that for example when people are thinking about a particular word thatīs presented to them in written form. People who have a sign language as a first language tend to have very strong associations with some of the action patterns there in the sign.

Natasha Mitchell: Motor cortex, for example, the parts of the brain co-opted in movement would be activated perhaps.

Ruth Campbell: Youīd expect to see that and itīs been remarkably hard to find. I think the take home message about how the brain manages signed language and spoken languages is that it manages them in a very, very similar way. The modality of the language seems to have remarkably little impact on the way the brain uses it and the way that people use it too. 

Natasha Mitchell: Letīs dig into that a bit more. Youīve been involved in a very interesting project called Imaging the Deaf Brain, probing how lip-reading, and sign language as well, both operate in the brain. Why was that of particular interest, to get to the heart of whatīs happening inside the head?

Ruth Campbell: What I wanted to do was to try and explore two sorts of visual language that are available to people: speech by eye, speech reading, is something that deaf people have to do to interact with hearing people.

Natasha Mitchell: So you mean lip-reading?

Ruth Campbell: Lip reading is what I mean, you can call it&#8212;we kind of prefer to call it speech reading these days, because it looks as though&#8212;itīs not just lip movements that are carrying the information, movements of the head are more extensive than that and itīs useful to be able to see the whole of the head and some of the torso of the speaker. So letīs call it speech reading&#8212;thatīs something that deaf people use a lot and you could say that a lot of deaf people are bilingual, bi-modally bilingual for speech and for signed languages. So one can then start to explore what the brain correlates of that are, and one can also of course contrast the patterns that you see in hearing people who are trying to speech-read but who donīt have a signed language. If you show them the same material as you show the signers, but they canīt make any linguistic sense of it, youīve got an interesting comparison there; they are just seeing meaningless gesture whereas the signers of course are getting linguistic meaning out of that.

Natasha Mitchell: You know sign language as you suggest uses much more of the body than spoken language, the hands, the torso...I guess just not the ears. So do they work very differently in the brain?

Ruth Campbell: Well you can see the differences in the brain. Whatīs really quite surprising is that signed languages and spoken languages tend to activate very similar regions of the brain, but you can definitely see a difference between whether somebody is watching oral movements for speech compared to when they are watching manual movements for a signed language. 

Natasha Mitchell: It turns out that sign language operates very much as a spoken language does in the brain, activating parts of the left hemisphere. And even though sign language is a very visual and spatial activity, it doesnīt involve the right hemisphere, our visuo spatial half of the brain, as much as was thought and lip or speech reading really distinguishes itself in the brain too as a language.

Ruth Campbell: The other interesting thing about watching speech being spoken is that it activates areas of the brain that until 10 years ago we thought were specialised for auditory speech processing only. The part of the brain that we are particularly interested in, right at the top of the temporal lobe just behind the ear, was really very strongly specialised for listening, for hearing and that inputs from other modalities didnīt have access to it. But in fact lip-reading reaches right into those auditory areas so weīve kind of changed, or most people in the field have kind of changed their idea about how sensory specific those regions are. Even watching sign can activate regions which 15 or 20 years ago most people would have thought were specialised for auditory speech processing.  In the past weīve over-generalised our ideas about brain organisation because weīve only had speech as a model on which to base them.

Natasha Mitchell: The fact that lip-reading activates parts of the brain that we always associated with auditory stuff, interpreting sound and listening, what are the implications of a finding like that?

Ruth Campbell: Ah, now this is where things start to get interesting. Where it ought to have an impact is in relation to cochlear implantation. At the moment there is a supposition, based to some extent on some neuro-scientific work, that the most successful implants, that is the best outcome in terms of auditory speech processing in the implantee, are where the auditory cortex, the hearing region of the brain, hasnīt had anything else going on in it prior to the implant. But I think our work suggests it might be too early to say that clinically one should try and keep a child away from watching speech while the child is waiting to have their implant.

Natasha Mitchell: So just to clarify, at present whatīs the strategy for installing an implant, a cochlear implant in a deaf child?

Ruth Campbell: As I understand it there is emphasis on keeping auditory cortex as pure as possible. Even if your child does want to communicate, you should hold back on making sign language models available to them, you shouldnīt do too much mouthing and things like that. 

If anything I think itīs more likely that watching speech might help tune up auditory cortex so that itīs ready for that implant when it comes and the child can then make better use of seen speech with the new auditory prosthesis. But these are areas that are going to take a lot more research to clarify. I guess the one thing that worries us in our deafness cognition and language unit is that we know from many, many studies with people who are born deaf to hearing parents&#8212;and this is the vast majority of deaf people, more than 85%&#8212;if they donīt learn a language, a sign language before they get to school, their language development is generally stunted and poor and itīs really difficult to get them back on track. So the idea that you might consider depriving a deaf child of language in order for an implant to be more effective is one that needs to be very, very carefully assessed.

Natasha Mitchell: Well Ruth Campbell thank you for joining me on the program.

Ruth Campbell: Itīs been a pleasure.

Natasha Mitchell: Controversial area this one, of course, always provokes discussion. Feel free to channel it into the All in the Mind blog. Professor Ruth Campbell there from the Deafness, Cognition and Language Centre at the University College London.

And my guests were just at Summerfest, a gathering of researchers who specialise in speech, language and much more, all part of the ARC Network in Human Communication Science in Australia. 

Next weekend with Radio National Summer a chance for you to enjoy a selection of All in the Mindīs highlight shows from 2008&#8212;podcast us on your holiday road trips. And Iīll be blogging on and off across the silly season in between being silly&#8212;pop in for a visit at abc.net.au/rn/allinthemind.

My thanks to Kyla Brettle and Tim Symonds, Iīm Natasha Mitchell, back next week with disembodied brains.]]></itunes:summary>
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