Martha said she was happy as she was, and Colin replied, “I’m trying to be
independent.” Peter and Philip said they did not have much time for the interview, as
they had a lot of lines to learn, so they omitted some topics and moved to the final
theme of screening
Prenatal screening
Martha spoke about the chances of her children having Down’s or diabetes.
Int: If you were going to have a baby and they said this baby’s going to have Down’s
syndrome, what would you do?
Martha: I know what to do, you know, it’s quite easy [laughs] everything, you know, the
baby, it’s a human being, feed it, look after, give it lots of love, everything.
Int: And can I just ask you about testing and screening? Do you think it is a good idea or
does it make more problems?
Martha: It makes more problems really I think, because [describes problems her mother had
with previous pregnancies] I’m not really sure what really happened, I wasn’t around at that
time [laughs]. I do know when I came I was a big shine to my mother, when I was born. She
was pleased that she had me, and yes it was a pleasure for her, for me too, and people need to
see that, like in [she described children with Down’s syndrome in soap operas].They should
show more like that.
Int: If you talked to counsellors who talk to women who have had the test and the baby
has Down’s what would you tell them to say?
Martha: [pause] Well you see, there wasn’t a test when I was born [pause]. Well if they want
to think about having it, it’s not my problem, but I really think they shouldn’t have it [the
test].
[We talk about how counsellors may not know anyone with Down’s, and Martha recalls
working in an office with a telephone help line about prenatal testing.]
Martha: I was the only one in the office with Down’s syndrome, all the rest are normal,
right? Well it’s all very well someone who’s normal talking about it. I could have been on
that telephone and I know the history of Down’s syndrome and I could easily say to anyone
who might have a Down’s syndrome baby, “Look at me then! Ha ha!” [Said triumphantly.]
Int: Do you think your mother fighting for you was so helpful, and saying, “Let’s go and
do this and try that”?
Martha: Yes, exactly.
Int: Where did she get her wonderful ideas from?
Martha: Well she just had it, and when she died it was like a bomb dropping on us, it was
very sudden, it’s been 8 years, and after that I had bereavement counselling....
Int: Did you want to say anything else about screening and what Down’s syndrome is
like?
Martha: Er, it’s 27 cells we have I think, I can’t remember. We have one extra cell, so that’s
a good thing, and we also tend to be quite floppy, the babies have that, but they don’t scream
and cry much. [They showed Down’s syndrome dolls on television] they’re all right to
play....but I don’t think the dolls are really like us because they’re plastic and we’re real,
we’re alive, we’re very very alive I might say.
Int: Do you know anyone with Down’s who does as much as you do?
Martha: No I don’t know anyone who does as much as I do. I think it’s quite sad that most
people don’t really know what to do [or] yes, they would have done a lot more, it’s a shame
[and she describes friends who she thinks are over-protected and thereby restricted.]
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