People 1st member Simone Aspis reports on Disabled Peoples (Jodie and Mary's) Equal Rights
To Life Campaign.
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Jodie and Mary were two girls born joined together in St Mary's Hospital.
They both had their own bodies but shared a heart vessel.
The doctors said Jodie is normal and had a good heart and lungs, which would allow her to
live a good life. Doctors said Mary does not have heart and lungs, which worked and
would be disabled including having learning difficulties. Mum and dad were told Jodie and Mary
could live together for between 3 and 6 months before Jodie may die from pumping blood around her
and her sister's body..
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St Mary's Hospital went to court to ask if they could carry out the operation to separate
Jodie from Mary. St Mary's Hospital doctors had to go to court because whilst they were
going to save Jodie's life, they knew Mary would be killed. The doctors said there was
nothing they could do to help Mary stay alive. St Mary's Hospital said Mary would die because
her heart and lungs would fail. The courts agreed that St Mary's could carry out the
operation knowing Mary (the disabled twin with learning Difficulties) would die.
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Many disabled people were very worried about what St Mary's Hospital wanted to do and how the
courts were talking about Mary. One of St Mary's Hospital doctors told the courts Mary would
be better off dead than living as a very disabled person. This is because doctors thought
the more disabled a person is, the more she is unlikely to have a good life. Mary's lawyer
(legal supporter) chosen by the Government did not ask the doctors if they were wrong linking
how much she is likely to enjoy her life with her disability.
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Also one of the judges asked what this creature (Mary) was in the eyes of the law?
It was both doctors and judges who did not see Mary as a good human being.
Mary did not get a fair hearing because she had a lawyer who did not ask many questions
and judges who thought she was not a human being.
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Our campaign wanted to speak up against St Mary's Hospital doctors, the courts and the press.
We did not think the doctors wanted ever to keep Mary alive.
We know Mary was not even put on a list for new heart and lungs (transplant).
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We campaigned outside St Mary's Hospital and the courts. We held vigils every week, asked
lots of people to sign a letter to Mary and Jodie and the Hospital saying we believe both
of them should have equal rights to life either to live by themselves or joined together.
Over 200 people signed the letter to Mary and Jodie.
A web-site with the Jodie and Mary's Equal Rights To Life Campaign was set up during the court
cases. Over 900 people visited the site and saw what disabled people think.
We printed articles, press notices and letters which some newspapers did not want to print.
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We wrote lots of articles for Disability magazines, and have spoken to newspaper reporters
on why Jodie and Mary were not treated fairly by the doctors and the courts.
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After Mary's death we wanted the court judge to find out the real reasons why Mary had died.
We wrote to the courts asking why Mary had really died (Inquest).
We first wanted to say who Mary was, why we thought Mary was killed and what questions we
wanted the judge to ask St. Mary's Hospital doctors. The judge asked some of our questions
we sent to him.
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We were really pleased that the court judge did not agree Mary just died from heart and lungs,
which did not work. The judge said Mary died after the operation to separate Jodie from her,
which was agreed by the other courts. We think this is good because we know Mary died as
the LAWS allow disabled babies to be treated unfairly when needing new body parts (organs)
and babies who are joined together can be treated unfairly.
We can't bring back baby Mary, but we can make sure everyone gets told the truth.
We think the judge may have listened to disabled people when saying why he felt Mary had died.
We felt Mary was killed.
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