Mara Sommer for World Down Syndrome Day
Today is World Down Syndrome Day.
This week, we celebrate World Down Syndrome Day with a special interview with our very own Mara Sommer.
Mara is a German-born, Aotearoa living photographer, wife, mother and superwoman. Her daughter Finja has Down Syndrome and loves music and dancing.
Today, Mara shares with us some beautiful portraits she recently took of Molly and Gabrielle who love dancing and Laetitia who is passionate about Taekwando.
Every year the global Down syndrome community joins together to create a single voice advocating for the rights, inclusion, and well-being of people with Down syndrome. These images celebrate WDSD’s campaign this year, calling for people and organisations around the world to be “With Us Not For Us”.
We were lucky enough to sit down with Mara while she shared parts of her own story, filling our hearts with the love and kindness her family and daughter share daily.
#WorldDownSyndromeDay
Tell us about your family. Can you tell us a little about the early days with Finja and when she was diagnosed with DS?
We knew early in the pregnancy about Finja’s Down Syndrome. I was on holiday with my family when I got a call from my midwife about the diagnosis. Within the same phone call, she asked me if I wanted to keep the baby. This question was constantly presented to me during pregnancy.
It’s a strange feeling to constantly be asked if you’re sure you want to keep your child. It made me very uncertain. I wish the doctors would have given me a bit more confidence and support.
The pregnancy wasn’t easy. There was so much uncertainty for us. As soon as Finja was born, the fact that she has Down Syndrome wasn’t important to me any more. I fell in love straight away.
If you could sum Finja up in five words, what would they be?
Happy, adorable, very social, stubborn, music-lover
What’s something that Finja does that makes you laugh every time?
She loves music. She started dancing even before she started walking. Sometimes she wakes up, opens her eyes, looks at me and signs the sign for music. That cracks me up. Speaking requires a lot of muscle, and it’s difficult for children with Down Syndrome because most of them have low muscle tone. We teach her signs, as well as the spoken word, to support her communication.
What are your hopes for Finja’s future?
I hope that she feels accepted, as she is, and included.
What does DS mean to you?
Tricky question. I don’t know. For me, it’s difficult. People with Down Syndrome are different. But I guess at the moment, and for maybe Finja’s whole life, it means that she needs more help. I believe she can achieve a lot, but it will be harder for her.
All people are different, but for people with DS, it's more obvious that they are different. I also think, generally speaking, DS is an opportunity for everyone to accept and celebrate that people are different.
What are some commonly misunderstood things about children with DS?
A general misunderstanding is that people might think that all children with DS can’t speak, or learn to read or write. Children with DS can go to school. Some go to university. Children with DS are strong visual learners. Showing them a picture, or adding a sign makes it easier for them to learn the spoken word. They learn differently, and also slower. This is what I also still have to understand and learn myself. I’m very grateful to the experts who teach me.
What is something you wish people didn’t say to you about your daughter or DS?
“I am sorry to hear”. There’s nothing to be sorry for. When you are a new Mum, you should get “congratulations” for the birth of your child, not pity. I understand that some people don’t know what to say when I mention that my child has DS. It might be because they’re not quite sure what it means. I am happy to answer questions and start a conversation rather than get pity.
What advice do you have for other parents who have just received a DS diagnosis? Or to a family of those that have just received the diagnosis?
First of all, I think everyone is shocked by a diagnosis. And that is ok. But I would also tell them "it will be fine." First and foremost, it’s your child and you’ll love them with or without DS. For everything else, there is support. Focus on your child, and not so much on the diagnosis first.
It’s great and important to get in touch with other people who have kids with DS. NZ Down Syndrome offer great support. There’s a fantastic community on Instagram of families who show their life. Seeing how “normal” life can be helped me a lot. Don’t Google DS though! Unfortunately, very outdated information comes up when you Google DS.
What do you wish you saw more of in the creative & advertising industry in terms of DS or other special needs?
Generally, more inclusiveness is good. Including people with DS might take the fear away to get in touch with someone who has DS. Including people with DS or other special needs in advertising and everyday situations shows that people with DS can have a “normal” life.
I remember when I arrived in NZ, there was an ad on TV which showed people with disabilities, mainly people with DS, which said “please treat us nicely” or something similar.
This was long before the birth of my daughter, but seeing that made me really sad. It felt so wrong that they needed to ask others to be nice to them. I think it’s the wrong approach.
The theme for this year’s Down Syndrome Awareness Day is #With Us Not For Us. I think it's much more appropriate. It’s a human rights-based approach to having the right to be treated fairly and get the same opportunities as everyone else.
For more information about this approach you can visit: https://www.worlddownsyndromeday.org/with-us-not-for-us.
There's also a great Instagram campaign made by Door Down which shows all the ridiculous excuses made to not include people with DS which is worth viewing: https://www.instagram.com/coordown/
CREDITS:
Photographer & Videographer Mara Sommer
HMU Leisa Welch
Wardrobe Tori Ambler
Talent Molly Kate, Gabrielle Salmon & Laetitia Tan