The Gothenburg English Speaking Theatre
'EXPECTATIONS'
Teacher’s Educational Pack
Theatre in English with actors from Britain
The Gothenburg English Speaking Theatre
Winner of the Edinburgh
Fringe Review Award
for Outstanding Theatre
GEST presents, in collaboration with Folkteatern
their Award Winning production
Expectations
by Kristina Brändén Whitaker
Directed by Gary Whitaker
Performing at Folkteatern 18 April-12 May 2012
FOLKTEATERN
GÖTEBORG
For the theatre production ‘Expectations’ by Kristina Brändén Whitaker
The educational pack includes:
Teaching exercises, written and practical
Useful vocabulary
Welcome to Holland - a mother’s description of becoming a parent of a disabled child
Information about chromosomes (both in English and in Swedish)
Information on Prenatal diagnoses
Other useful links and websites
Introduction
The play Expectations addresses some of the most complex issues around life and death. How
can one determine whether a life is worth living? Should everyone automatically be given the
right to live? What should the criteria be and how is that going to measured? Who should decide
an unborn child’s fate, parents or doctors? New scientific knowledge and processes are evolving
at a rapid rate and what was yesterday deemed inconceivable is today merely commonplace. How
far can science go without breaking the barriers of human ethics? Who should decide what these
barriers are? The play’s themes are highly topical, emotionally charged and contributes to this
debate on prenatal diagnosis.
Teaching exercises – written and practical
Below are suggestions for both practical and written follow up exercises that can be used after
you’ve been to see the play Expectations.
Writing exercise 1
Klara’s emails: In the play we never see or hear Klara’s emails to Theresa. Write an email as
Klara to Theresa where she describes Liv, Liv’s progress and how they are finding life with Liv,
etc.
Writing exercise 2
Theresa’s emails: In the play Theresa really wants to have another child. She says that she is
longing to go through the normal things involved in bringing up child. Paul doesn’t want to have
another child and it’s very difficult for them to have a conversation about this. In the play we hear
a few emails that Theresa has written to Klara. Write another email where Theresa tells Klara
about her strong desire to have another child. Things you may also want to include in the email:
Theresa's frustration with Paul; the fact that she takes most of the responsibility for Lillian and
that Paul is always working late.
Drama exercise 1
(Klara and Mattias) In the play we never see Mattais and Klara when they receive the news that
their baby will have a rare chromosome disorder. In pairs improvise the scene between Klara and
Mattias when they have found out that their baby has a rare chromosome disorder and they make
the decision to terminate the pregnancy.
Useful things to bear in mind in the improvisation:
2 The doctors have said that the child might not survive, may suffer pain, have a heart defect,
or be severely disabled
Consider the possibility of carrying on with the pregnancy and living with a severely
disabled child.
What are the issues that effect the final decision?
Drama exercise 2
(Klara and Mattais) Discuss Mattias and Klara’s inability to talk to each other after they
terminated the pregnancy. Why is Klara choosing to shut Mattais out and not talk to him? Why
are they not able to talk about the decision they have made, how they feel about what they both
have been going through and the grief for the child they never had? Discuss how and in what
ways they could have had a better dialogue with each other. From the outcome of the discussions,
in pairs improvise a scene where Mattias and Klara are able to communicate.
Things you can include in the improvisation:
Talk about what you’ve been going through and the decision that you made
Your worries. This could be guilt and fear that you may have made the wrong decision.
The grief for the child you never had and the pain you both feel.
Drama exercise 3
(Paul and Theresa) Discuss what happens after the end of the play. How will Theresa take it
when she finds out about Paul’s secret? If they decide to have more children what are their
possibilities with prenatal diagnosis? What tests could they do (amniocentesis and chorionic
villus sampling (CVS) or IVS)? Would they like to do these tests? Could they terminate a child if
they found out that the child had the same disorder as Lillian? Will they be able to cope if they
had another disabled child?
From the outcome of the discussions, in pairs improvise a scene with Theresa and Paul when she
finds the letter. Show how she takes the news and develop the discussion they have about having
another child.
Drama exercise 4
Abortion dilemma at a young age. In pairs improvise a scene from any below. This is an exercise
where you can use the abortion dilemma in your own age group. Choose one of the following
scenarios:
A. Two females or one male and one female: A has found out that she is pregnant. She is still at
Gymnasium. This was an unplanned pregnancy and A is in total shock. A hasn’t told anyone
about this and she decides to talk to her best friend B about it. A doesn’t know whether or not to
keep the baby. Take into account what her parents and family would think about it. Perhaps she’s
from a religious background where abortion would be unacceptable, or she knows that her
parents would want her to have an abortion and continue with her studies. A knows that if she
was to keep the baby her whole life would change. Would she be willing to make those
sacrifices? A knows that if she decided to go for an abortion it would be emotionally hard for her.
Her friend B is listening, trying to give advice and trying to be a good and supportive friend.
3 B. Two males or one male and one female: A has found out that his girlfriend is pregnant and
he hasn’t told anyone about it but decides to tell his best friend B. You are both still in
Gymnasium. You may choose to do an improvisation where A doesn’t want to be a father but his
girlfriend wants to keep the baby. Alternatively you may want to choose an improvisation where
A doesn’t know how he feels either way. Things to consider would be:
• How would it affect your life if you would become a father, what kind of responsibilities
would it entail?
• If your girlfriend wanted to have an abortion how would that affect you?
• How would you feel about that? What would your family think about you becoming a dad?
A’s friend B is listening, trying to give advice and trying to be a good and supportive friend.
C. One female and one male: Your both still at gymnasium. The girl has found out that she is
pregnant and has decided to meet up with her boyfriend to tell him. How does he take it? Do you
want to keep it? What would it mean if you didn’t keep it? How does he react? How would either
of your families react? Improvise the conversation. You may agree or disagree on whether to
keep the baby or not.
Useful vocabulary from the play:
Scan - ultraljud
Disabled - funktionshindrad
Neonatal intensive care - Intensivvård för nyfödda
Prenatal diagnosis - Fosterdiagnostik
Incubator - kuvös
Paediatrician - barnläkare,
Genetics Counsellor - a health professional with specialized training and experience in the areas
of medical genetics and counselling (rådgivare inom genetik)
Chromosome abnormality: Kromosomavvikelse Respite care: avlösning
4 Welcome to Holland – a mother’s description of becoming a parent of a disabled child
I am often asked to describe the experience of raising a child with a disability - to try to help
people who have not shared that unique experience to understand it, to imagine how it would feel.
It's like this...
‘When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a
bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David.
The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go.
Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in
Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of
pestilence, famine and disease. It's just a different place. So you must go out and buy new guide
books. And you must learn a whole new language. And you will meet a whole new group of
people you would never have met. It's just a different place. It's slower-paced than Italy, less
flashy than Italy. But after you've been there for a while and you catch your breath, you look
around.... and you begin to notice that Holland has windmills...and Holland has tulips. Holland
even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're
all bragging about what a wonderful time they had there. And for the rest of your life, you will
say, "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a
very very significant loss. But... if you spend your life mourning the fact that you didn't get to
Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.’
Emily Perl Kingsley 1987
5 Introduction To Chromosome
What are Chromosomes?
Simply put, chromosomes are the structures that hold our genes. Genes are the individual
instructions that tell our bodies how to develop and keep our bodies running healthy. In every cell
of our body there are 20,000 to 25,000* genes that are located on 46 chromosomes. These 46
chromosomes occur as 23 pairs. We get one of each pair from our mother in the egg, and one of
each pair from our father in the sperm. The first 22 pairs are labelled longest to shortest. The last
pair is called the sex chromosomes labelled X or Y. Females have two X chromosomes (XX),
and males have an X and a Y chromosome (XY). Therefore everyone should have 46
chromosomes in every cell of their body.
If a chromosome or piece of a chromosome is missing or duplicated, there are missing or extra
genes respectively. When a person has missing or extra information (genes) problems can
develop for that individual's health and development. Each chromosome has a p and q arm; p
(petit) is the short arm and q (next letter in the alphabet) is the long arm. Some of the
chromosomes like 13, 14, and 15 have very small p arms. When a karyotype is made (see below)
the q arm is always put on the bottom and the p on the top. The arms are separated by a region
known as the centromere (red in picture), which is a pinched area of the chromosome. The
chromosomes need to be stained in order to see them with a microscope. When stained the
chromosomes look like strings with light and dark 'bands'. Each chromosome arm is defined
further by numbering the bands, the higher the number, the further that area is from the
centromere.
6 What is a Karyotype?
karyotype is an actual photograph of the chromosomes from one cell. The cells analyzed are
usually white blood cells from a regular blood draw or from a prenatal speciman. After staining
the chromosomes can be seen as banded strings under 1,000 x magnification. They are analyzed
by specially trained cytogenetic technologists, Ph.D cytogeneticists, or a medical geneticists.
'Cytogenetics' is a word for the study of chromosomes. After analysis under the microscope a
picture (karyotype) is printed.
Normal Male Karyotype (a female would have two X's instead of an X and Y)
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Introduction about Rare Chromosome disorders
7 Rare chromosome disorders include extra, missing or re-arranged chromosome material but do
cytogeneticists think they might be seeing. This helps to help clarify the results.
Introduction about Rare Chromosome disorders
Rare chromosome disorders include extra, missing or re-arranged chromosome material but do
not include the more common chromosome conditions such as Down's Syndrome. Using the
latest technology, it is now possible for smaller and more complex chromosome defects to be
identified. The amount of chromosome material duplicated, missing or re-arranged can vary a
great deal. This means that it may be difficult to identify two people who have exactly the same
chromosomal disorder. The clinical problems of those affected can also vary enormously even
when the chromosome diagnoses are similar.
Individually rare chromosome disorders are indeed very rare but collectively they are common.
In fact one in every 200 babies is born with a rare chromosome disorder, from which one in every
1,000 babies have symptoms from birth or early childhood and the rest are affected when they
grow up and try to have babies of their own. They may have multiple miscarriages, fertility
problems, stillbirths or the birth of a disabled child. Some of these chromosome disorders are so
rare that they are actually unique. It is usually immediately following diagnosis that affected
families and individuals have the greatest need for emotional and practical support and above all,
for information. But even among the more common "rare" disorders, it is likely that the
professionals in the local community - the GP, Social Worker or even hospital specialists - will
have never before come across anyone with the same disorders. The usual sources of support are
not available to affected families, yet the effects of the disorders can be devastating. The vast
majority of families have a desperate feeling of isolation.
Kort introduktion till kromosomer och kromosomfel
Förenklat kan man säga att kromosomerna är de strukturer som bär våra gener. Normalt har vi 46
kromosomer. Dessa är formerade i par där ena hälften kommer från modern och andra hälften
från fadern, alltså 23 par. De första 22 paren har namn som sitt nummer (1-22) medan det sista
paret, könskromosomerna, benämns X resp. Y. En man har en av varje (XY) medan en kvinna
har två X-kromosomer (XX).
Om en individ inte har dessa 46 hela kromosomer utan saknar en bit av någon kromosom (sk.
deletion) saknas de gener som denna bit innehåller. Om en extra kromosombit bildas (sk.
duplication) finns dessa gener i en extra uppsättning.
En person med för lite, eller för mycket, gener kan drabbas av missbildningar,
utvecklingsstörning eller sjukdomar.
Trots att det låter konstigt behöver dock inte ett kromosomfel innebära några problem alls för
individen. Hur stor skada det blir beror på vilka gener som är inblandade i felet. Detta innebär
också att en avsaknad av en lång bit av en arm kan ge en mindre skada än en avsaknad av en liten
bit av en annan arm. Tyvärr har inte forskningen ännu nått så långt att man vet vilka gener som
påverkar vad.
Dessutom kan nämnas att det är svårt att direkt jämföra även barn med mycket liknande
förändringar.
För att kunna se en kromosom används mikroskop och kromosomerna ser ut som maskar med
omväxlande ljusa och mörka segement. Man använder ytterligare tal för att beskriva exakt var på
armarna man menar, ju lägre tal desto närmare mitten. (se bild).
Varje kromosom har en lång arm (kallad q-armen) och en kort arm (kallad p-armen). Normalt
8 armarna man menar, ju lägre tal desto närmare mitten. (se bild).
Varje kromosom har en lång arm (kallad q-armen) och en kort arm (kallad p-armen).
Normalt betecknas normala kromosomuppsättningar med 46,XX (kvinna) och 46,XY (man).
betecknas normala kromosomuppsättningar med 46,XX (kvinna) och 46,XY (man).
En felaktig kromosomuppsättning kan däremot skrivas som 46,XX,del (14)(q23) som betyder: En
kvinna med normalt antal kromosomer men med en avsaknad av en bit av kromosom 14. Den bit
som saknas är kromosomsegmentet som sitter distalt (ytterst) efter band 23 på den långa
kromosomarmen (q-armen).
Fler exempel:
Beteckningen 46,XY,dup(14)(q22-q25) blir: En man med normalt antal kromosomer men med en
dubbel bit av kromosom 14. Den bit som dubblerats är segmentet mellan banden 22 och 25.
Beteckningen 46,XX,r(7)(p22q36) betyder: En kvinna med normalt antal kromosomer men där
kromosom 7 bildat en ring. Den långa armen (q) har byggts ihop med den korta armen (p) och
detta har gjorts mellan p-armens 22:a band och q-armens 36:e band.
Downs syndrom, i det här fallet en man, beskrivs enligt: 47,XY,+21 vilket innebär att individen
har en kromosom 21 för mycket.
Prenatal diagnoses −
Testing Your Baby for Genetic Problems During
Pregnancy
It is possible to test for the genes your baby has inherited. There are two main ways of
checking your baby for genetic problems while it is in the womb. These techniques are called
amniocentesis and chorionic villus sampling (CVS). We explain how the tests are carried out,
what sort of abnormalities can be picked up and what risks are involved.
We give general information only. If you want more detailed information about these tests or
your personal circumstances do discuss the matter with your GP or hospital specialist.
9 Amniocentesis
What is amniocentesis?
The test involves placing a needle in to the womb through the woman's abdomen (tummy) and
obtaining a small sample of the fluid in which the baby floats (the amniotic fluid). Most women
say that the test is not painful. The amniocentesis test is usually carried out between 16 and 18
weeks of the pregnancy and can be done in an outpatient clinic without the need for an overnight
hospital stay. As part of the test an ultrasound scan is carried out to check whether twins are
present and to see where the placenta and the baby are. The fluid contains cells that have come
from the baby and these cells are then grown in the laboratory so that genetic tests can be carried
out on them.
What type of abnormalities can be detected?
Abnormalities caused by extra or missing chromosome material can be detected, the most
common of which is Down's Syndrome (trisomy 21), where babies have an extra chromosome 21
in every cell or their body. Other chromosomal abnormalities can also be detected. The effects of
all these conditions will be discussed in detail with the parents. Many of these chromosomal
abnormalities lead to serious conditions and a termination of pregnancy may be one option for
the parents to consider. In some cases, other disorders caused by a single abnormal gene can be
found. At present tests for these are usually carried out only when there is a family history and
there is a risk to the baby with a particular genetic disease, such as cystic fibrosis, sickle cell
anaemia or Tay Sachs Disease. The amniotic fluid itself is also tested to measure the level of a
protein called alphafetoprotein (AFP). The level is high if a baby has spina bifida, and this test
picks up 95% of babies with this disorder. A detailed ultrasound scan is then carried out to
confirm the presence of spina bifida.
What are the risks of amniocentesis, and how reliable is it?
The amniocentesis test carries a small risk of causing a miscarriage, about 1 in 100, but other
complications are very unusual. The amniocentesis test is a very reliable way of examining the
baby's chromosomes, but in order to obtain results the cells must begin to grow in the laboratory.
Occasionally this does not happen and a further sample may be needed.
When is the result available?
Within three to four weeks if an abnormal result is found and the couple decides to have the
pregnancy terminated, this could be done at around 19-20 weeks of pregnancy.
Chorionic Villus Sampling (CVS)
What is chorionic villus sampling (CVS)?
The CVS test is carried out earlier then amniocentesis - at around the 9th or 10th week of
pregnancy, and again it is an outpatient procedure. Rather than testing a sample of the fluid of the
mother's womb, this test takes a very small amount of material from the developing placenta. One
way of doing the test is to place a thin tube through the cervix (neck of the womb) to obtain the
sample. Most women say that this is only slightly uncomfortable. Another method is similar to
the amniocentesis test, and involves placing a needle in the womb and using an ultrasound
scanner to guide it.
What type of abnormality can be detected with CVS?
The sample contains cells that are of the same genetic type as the baby and so can reveal the same
10 sort of disorders that amniocentesis discovers. Similarly CVS can detect rare diseases caused by
abnormal genes, but these tests will only normally be done if there is a family link with a
particular disorder. Because no amniotic fluid is obtained the test cannot be used to look for
babies with spina bifida.
What are the risks of CVS, and how reliable is it?
The CVS test has a slightly higher chance of miscarriage than amniocentesis, but it has the
advantage of being able to be done earlier in pregnancy. It is a relatively new test and there is not
so much information on reliability as with amniocentesis. There is a suggestion that the CVS test
may give a confusing result in a small proportion of cases, maybe one in 100. In such cases it
may indicate an abnormality where none exists. Although there is usually additional information
that clearly demonstrates that the baby will be abnormal, where doubt still exists it may be
necessary for an amniocentesis test also to be carried out later in the pregnancy. There is also a
remote possibility - around 1 in 1000 cases - that a chromosome abnormality will not be detected.
When is the test result available?
This is normally just one to two weeks after the test.
Other useful websites
Unique: Unique is a source of information and support to families and individuals affected by
any rare chromosome disorder and to the professionals who work with them.
www.rarechromo.org
NOC: Nätverket för ovanliga kromosomavvikelser på svenska
www.noc.to
The Genetic Interest Group (GIG) is a national alliance of patient organisations with a
membership of over 130 charities that support children, families and individuals affected by
genetic disorders.
www.gig.org.uk
FUB : Riksförbundet För Utvecklingsstörda Barn, Ungdomar och vuxna: www.fub.se
Antenatal Results and Choices, ARC is the only national charity which provides non-directive
support and information to expectant and bereaved parents throughout and after the antenatal
screening and testing process: www.arc-uk.org/
http://www.rfsu.se/abort.asp (fakta om abort)
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