Monday, 3 October 2016

Ability Not Disability- Interview With Wendy Puckrin

October is Down's Syndrome awareness month and with My Feral Heart being talked about, ahead of it's November release in Cinemas, I was privileged to spend time with Wendy Puckrin. Wendy was 38 when she gave birth to Elijah. Now Elijah is 3 years old I talk to her about how he has changed her life forever....

Hi Wendy, thanks for taking time away from work to chat with me. Can I start by asking you what your opinions were about Down's Syndrome before Elijah was born?

No problem at all, I really want to do anything I can to help people understand what living and loving someone with Down's Syndrome is really like. I think before Elijah was born I was like a lot of people, kinda ignorant of the whole area. I didn't know anyone who had DS and would often refer to people as "retards" not because I wanted to offend anyone but because I was just not very informed. I know how offensive the word is now but I really didn't have any connection with what it meant. I don't think the media really does much to create a positive impression of those who have Down's Syndrome as part of who they are and its easy to see how people can go through their whole lives believing what they are told. A lot of the information is out of date and some of it is just wrong. It's not just the media though as the medical profession uses a lot of incorrect information that was researched years ago.

You didn't have the tests before Elijah was born did you? How were you told about the diagnosis for Elijah?

No, so I really didn't have any idea at all. Soon after he was born the nurses rushed him off and kinda muttered something about Down's Syndrome. When I was given the diagnosis it was treated as if it was like it was the end of the world and that it was the worst thing that could have possibly happened. I was given a pack of information and included is a leaflet about adoption. The information is delivered in a really negative way and, as a new mother, you are left feeling like you will not be able to cope, to support your child just because he or she has Down's Syndrome. There are a higher number of babies with Down's Syndrome adopted soon after birth then without and I think this has a lot to do with new mums being persuaded they wont be able to cope. I was asked if I could think of anything that I had done during pregnancy that could have caused DS to occur? It's a question that is asked purely from a position of ignorance but when its asked by a member of the medical profession it carries more weight. There is nothing you can do to make DS more or less likely to occur, no one knows what causes it.

What are the perceptions you feel are important to challenge in regards to Downs Syndrome?

You CAN cope and Elijah has changed my life, he is the most amazing and wonderful child I could possibly imagine. He is perfect and his smile is like catching a glimpse of heaven. I feel that people need to truly understand the reality of Down's Syndrome and it's so important that people don't just believe what they hear. For example, a lot of people believe that all those with Down's Syndrome have congenital heart defects and this just isn't true. Elijah has none of these challenges, yes, its true that having DS increases the chances of heart defects but it doesn't follow that everyone has them. No one child is the same, they all have specific characteristics and personalities that make them exceptionally individual. Children who have DS are all different as well and deserve to be treated with the respect and care that all children should be. We don't decide whose life matters more and who is more worthy of prizing more highly, it is wrong that just because someone has an extra chromosome (which is the only thing that is different between someone who has DS and someone who doesn't) they are treated in a different way. Does that make them inferior? or less human? The fact is that if a diagnosis of Down's Syndrome is delivered a mother can decide to abort at any time, there is no cut off!

Your blog is amazingly honest and personal, it has a huge potential to support and challenge misconceptions. What else can be done?

I spend a lot of time going and speaking at Medical colleges to students before they qualify. Telling them about the reality of life with Elijah and the importance of delivering the right information in a positive way to parents. How can we expect people to make an informed choice with the wrong information? I think medical professionals need to see the personality and real lives behind the facts and figures. I am hugely supportive of the NHS but information given out needs to be the right kind and delivery is all important. On a wider level I think the media need to think very carefully about their role in informing the public. Sally Phillips documentary (Wednesday 5th October at 9pm BBC 2) is so important because people will see what it really is like to support and love a child who has DS. But it is easy to open your eyes if you really want to, go onto a Facebook page that supports and gives information out about Down's Syndrome. The problem is a lot of people think "cute kid but whats it got to do with me? Why should I like the page?" There will be always be some people who don't want their minds to be changed or don't want to admit they are wrong, but for most (and for me) its about ignorance and just not knowing the reality.

What do you think is the biggest obstacle in creating a more positive and factually correct view of Down's Syndrome?

Misinformation and a lack of positive examples in the media. A lot of press is given to autism and it now feels like its almost trendy to have it. Its kinda like its got a much more acceptable and positive feel about it than Down's Syndrome. Every person who has DS has a different character and is an individual. Down's Syndrome is not an illness, its not a disease it IS just as much a part of who a person is as skin colour, hair and colour of eyes.

Why do you think films like My Feral Heart are important and why should people watch them?

I watched My Feral Heart on Friday and I have to be honest, its not the normal sort of film that I would enjoy. I prefer a horror film or a thriller but all of the characters in the film are so loving I couldn't not like it. It is film that seeks to highlight what Luke (the films lead) can achieve, his self sufficiency and ability to care for himself and his mum. The assumption that everyone who has Down's Syndrome are incapable of looking after themselves is just wrong and hugely offensive. Luke, like Elijah and so many others with Downs Syndrome have a huge capacity to care and love without barrier or limit. Its a film that celebrates what brings us together not what separates us. Fighting for individuality, it's so relevant. Some people with DS are not going to be able to live independently, but to assume that all are not capable of it is just so wrong. We need to fight for them to be able to make their own choices and decisions as individuals.

How has Elijah changed you?

Oh wow where do I start. He is my whole world, he gives me so much more than I can ever give him. No one knows what makes a four leaf clover but they are so rare it is said that its lucky to find one. Down's Syndrome is like a four leaf clover and I have mine. He has made me so much more positive than I ever was before and his smile, his perfect smile just sets my day up so wonderfully. Elijah is a perfect, perfect tiny, tiny human. I don't want to put limits on his dreams or question what he can achieve. If you are held back from day one how can you expect to achieve what you wish to? People believe negative over positive automatically. Elijah has proved this is something that can be changed.

“And I’d choose you; in a hundred life times, in a hundred worlds, in any version of reality, I’d find you and I’d choose you.”
― Kiersten White, The Chaos of Stars
Thank you so much for chatting with me, you are an inspiration to me and to others and Elijah is such a lovely boy who has a supportive and amazing mum. 

You can follow Wendy and Elijah on Twitter @ThisIsElijahUK Or on Facebook here and check out local screenings for My Feral Heart here

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