I was sitting beside my daughter’s bed in the Pediatric Oncology Clinic when I found out. She’s in her eighth month of chemotherapy, with nineteen more to go. This week has been particularly brutal. We had rushed her to the hospital last night when she spiked a fever. Again.
Every small setback takes a toll, but she doesn’t let it keep her down for long. She’s tough. Tough and sweet and feisty, and a thousand unique qualities all her own. She is the joy of our life.
She also has Down Syndrome, a fact that seems to matter more to other people than it does to us. I often write about her on my little blog. Anecdotes and opinions, stories of our busy life for a small, but encouraging group of readers. I never refer to my children by name, and rarely post pictures of them. But once was all it took.
Her photo was stolen. A beautiful shot of her face – one of my favourites, posted on a stock photo website and distributed for free.
As if that wasn’t bad enough, it was stolen again by a Swiss bio-medical company named Genoma. On the front page of their website and a building sized banner in Spain: there’s her face, larger than life. My daughter has been made the poster child for a prenatal testing kit called Tranquility. As if she were a cautionary tale: don’t let this happen to you.
The campaign is so disparaging towards individuals with Down Syndrome that it incited an avalanche of complaints from concerned parents and disability rights activists in Spain. One parent is quoted in a local publication asking “what mother could allow her daughter to be photographed and used for this campaign?”*
Not me. Never. I would never have allowed this.
It was a fellow parent, one who also has a child with Down Syndrome, that recognized her picture from my blog and alerted us. I was stunned. The more we looked into it, the worse it got. To know that this happened infuriated me, but when I saw with my own eyes… her sweet face on that ugly banner, it broke my heart. While my girl courageously fights for her life, this company questions whether she has a life worth living.
How dare they?!
Prenatal testing will always be a hot-button topic for parents like us. Let’s be honest, with a 90-95% termination rate parental preparedness is not the primary goal of these tests. I find it morally reprehensible. But even that is beside the point – they had no right to exploit her to sell their product.
Why couldn’t a multinational corporation pay for their own publicity photo? Perhaps they couldn’t find a parent willing to put their child in this position. Perhaps they didn’t even bother looking. Why pay when you can just take?
We have contacted the company directly, firmly asking them to remove her picture. They have not responded. Her picture remains (update below).
I’ll admit, I felt guilty. That it was my fault. I put her picture online. I didn’t prep it for the web properly. I failed to protect her.
Until I realized, I did nothing wrong. They broke the law. This heartless company that used my daughter’s photo without our consent, or that of our photographer. Legally a copyright infringement, but also breaking what is referred to in copyright law as “moral law” since her image was used in a derogatory fashion. They insulted and abused my innocent child in their pursuit of profit. They broke faith with common human decency. And the world is watching.
What’s worse (for them), they angered this Mama Bear.
Where initially I considered taking all our photos offline, deleting my social media accounts and hiding in my house for the next 10 years, now I’m determined to weather the storm. We will not flinch. We will not hide. My daughter is beautiful and her life is worth celebrating.
Update – at this time Genoma has removed our daughters photograph from their website. They’ve indicated a desire to apologize. While I do not believe their actions were intentionally malicious, in my opinion what happened was unethical and illegal. The onus is on them to adhere to copyright law, whether first or second hand, theft is theft. This isn’t some guy in his mother’s basement, this is a huge multinational, surely they have the resources to properly vet a publicity photo, particularly one of an innocent child being used in such a controversial way.
Turkish German(?) “free image” website has still not responded or removed our daughter’s photo.
We are consulting a lawyer.
Further Update – the ‘down syndrome’ page of the stock photo website, including our picture and at least two other stolen photos has been… wait for it… SHUT DOWN! I can’t tell you how much I appreciate the efforts of computer savvy strangers driven by no agenda of their own, only a desire to right a wrong.
We’ve reached a satisfactory agreement with Genoma, including their commitment to include information about Down Syndrome support organizations with their product.
So now what? – answering the “how can I help?” and “how is she doing?” questions. There are too many encouraging comments to address individually at this point in our life, just know that you are deeply appreciated.