Talking about diversity, not disability
‘‘Disappointing’’ is how Nelson mother Jody Nichols sums up Shortland Street’s treatment of Down syndrome.
Nichols is the mother of 12-yearold Lily who has Down syndrome. She describes the Kiwi soap opera’s portrayal of the subject as a lost opportunity. ‘‘I just felt the language and the negativity, it wasn’t well balanced.’’
The storyline involved the character of Zoe Carlson discovering she was possibly pregnant with a child with Down syndrome. The father of the child, Chris Warner, told her she should have an abortion, suggesting that the child ‘‘will suffer’’ and have severe medical issues, including blindness.
Nichols says that Chris Warner being a doctor, even a fictitious one, means people look up to him, and the television show has a social obligation to portray things correctly.
‘‘Woman who are pregnant and they have just found out they have a high chance of having a child with Down syndrome, they could be watching it and it could be shaping their opinions and their thoughts.’’
She says the emotions are realistic but the show could have portrayed the other side as well, with a more balanced view of the subject.
‘‘We didn’t find out Lily had Down syndrome before she was born. I can honestly say I don’t know what I would have done in that situation. I’d like to think that I would have carried on with the pregnancy, but I can’t say. In that moment you can’t make that decision, it’s a difficult decision to make.’’
She says the attitudes represented by Warner are typical of some of the people she has encountered in the medical profession.
‘‘I think we need to educate the medical profession in how they deliver the news. I had a midwife who cried.
‘‘You have this beautiful young baby, but you’re being told she might not walk and she could be blind. I’ve never met anyone with Down syndrome who is blind.’’
Nichols is also critical of the language used in the programme and what she says was a lack of research. Chris Warner referred to having a ‘‘downs baby’’ instead of a child with Down syndrome, and at one point even used the term ‘‘munted’’.
Nichols says the need for better education is crucial.
‘‘I think people are really accepting, but there is a move towards the perfect baby, and I find that really scary.
‘‘Where are we going to stop? We can screen for Down syndrome, so do we start screening for autism?’’
Nichols says people like Lily bring diversity to society. When she and her husband had Lily, they knew nothing about Down syndrome.
In the education setting, Lily contributes a lot, her mother says. ‘‘It’s not just others helping her – she teaches them a lot, too.’’
She says the most common comment they get is that Lily looks she has quite mild Down syndrome.
‘‘I joke [that] it’s a bit like being pregnant – you can’t just be a little bit pregnant. You either have the extra chromosome or you don’t.’’
When Lily was born, Nichols says she and her husband had the support of an ‘‘amazing early intervention centre’’ in Christchurch, the Champion Centre, which shaped how they parented her.
‘‘I can remember the first thing they said is, ‘The best thing you can offer Lily is treat her like a normal child, and make sure you keep yourselves happy and make sure the other children are happy’. That’s the best angle, so that’s what we have done.
‘‘She amazes us all the time with what she can do and what she’s capable of.’’
Lily has no hearing problems or heart problems, and her speech is good. She does have coeliac disease, which Nichols says the family just take in their stride.
Lily is mainstreamed at school. She does jazz dancing and has just passed her exams with merit. She’s got a show coming up.
She takes swimming lessons and goes to Cubs. She dotes on the family’s two new kittens, Coco and Simba. All normal stuff.
In the fullness of time, Nichols imagines that Lily will leave home just like other young people and live independently.
She says Shortland Street has an opportunity to portray Down syndrome in a better way. In the past, the popular show has touched on contentious subjects, and has included information in the credits about who to contact to find out more.
‘‘They need to portray things fairly and give minorities a voice. I am sure if Down syndrome was replaced with race or sexual orientation in this context, that it would have been dealt with differently.’’
‘‘I think people are really accepting, but there is a move towards the perfect baby, and I find that really scary.’’
Jody Nichols, mother