The name is absent



Peter: That is actually what we are doing in this play, for heaven=s sake. [A pause] I=m
speechless. The productions we have done are just fantastic. [They look as if their reply is too
profound to put into words.] Carry on [to the next question]. Pass.

Int:    Yes. You just think it is a completely out-of-order idea? It’s not worth talking about,

it’s so dreadful?

Peter That’s, that is what I was thinking of.

Int:    Yes, thank you. I am sorry to ask you about these things. The reason is, people around

the world are asking doctors, nurses, parents, experts, but they don’t ask people with Down’s
syndrome, and surely you’re the people who really know what you’re talking about, that your
lives are interesting and really worth living and good lives.

Peter and Philip: Yes.

Int:    Yes, it’s very good of you to talk to me. Was there anything else you wanted to say?

Philip: Well it’s just about some of these things, they are too personal, I don’t want to talk
about them to you or anyone.

Discussion

As an exception, despite Peter saying “pass”, I continued a little with the theme, to avoid
leaving their response simply silent and unrecorded, or misinterpreted. It felt strange to visit a
house where four adults had lived amicably together for so long, and receive these deep
responses, as if they could not express their concern in words, because words are inadequate,
too definite, finite, compared with their sighs and looks of great sadness and sense of
overwhelming enormity. They had wrestled with these ideas for years in their dramas, and
Martha had in her teaching, as well as in their daily relationships. Colin seemed troubled by
these questions, as if he needed someone with their insights to talk to about his mixed
feelings on whether having a child with Down’s was “good”. John’s involvement with his
family and friends in enjoyable, responsible activities seem to leave him less worried about
discrimination. Possibly his confidence and good humour helped him to cope until “they

realised that they were being stupid, whereas Colin seemed to have no one to help him with
his anger about similar treatment.

Through specific examples (being pushed in the street, or excluded from mainstream
school) they described the frustrations, pains and restrictions of prejudice. The 40
interviewees tended to attribute problems to negative attitudes and social barriers rather than
to their congenital condition, and most were frustrated at not having the opportunities,
employment, income and social acceptance to enable them to live their lives as fully as they
thought they could. The greatest asset for the five people with Down’s syndrome appeared to
be family and friends, including artists and actors, who helped them to join mainstream
education, work, housing and friendship networks. Deliberately or not, the interviewees’
views appeared to adhere to social rather than medical models of disability, informed by their
experiences.

Generalisability and validity of research about Down’s syndrome

It could be argued that people with learning difficulties cannot know their own limitations,
and everyone is liable to blame circumstances or other people rather than their own failings.
Yet the marked contrast between Peter’s and Philip’s drama skills, which might easily never
have been realised, and their boredom at the day centre, suggests that the potential of people
with learning difficulties will not be realised until they have many more opportunities to
develop it. Research which enquires beyond morbidity into people’s potential and
achievements, and the social influences which support or constrain them, is required before

14



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