This one couldn’t wait until Tuesday – I hope you’ll forgive me.
Two articles recently published in The Daily Mail (UK) have caused a great deal of hurt in the Down syndrome community. I’ve always believed in the notion that each person has a right to their own perspective – their own truth. Along with that, we must respect each other enough to allow individuals to speak their truth, even when it’s not something we want to hear. It’s up to us how we react to that truth.
The first article appeared on October 9th. Editors at the Daily Mail came up with an eye-catching headline:
By Suzanne Treussard For The Daily Mail – October 9th 2014
- Suzanne found out she was pregnant with her second child in April 2011
- She and husband Tim were overjoyed at prospect of becoming parents again
- Ante-natal tests revealed their son Oscar had Down’s syndrome
- The couple made the excruciating decision to terminate the pregnancy
- She delivered Oscar naturally after taking medication to end his life
- The couple adored their tiny baby and believe they did what was best
The extended story was difficult for any parent of a child who has Down syndrome to read, but it was Suzanne’s truth.
I chose to ignore the article as best I could, refusing to write about it out of anger or fear. Instead I quietly grieved for Suzanne, Tim, and Oscar, and wondered how many other parents out there had similar feelings. Was Suzanne’s story part of a larger truth?
Today, another sizzling headline caught my attention:
- Gillian Relf, 69, regrets having her son, Stephen, 47
- Stephen was born with Down’s Syndrome and needs constant care
- She worries about what will happen to her son when she dies
Within hours, the story had 5.4K shares and 923 comments. It spread throughout my Facebook and Twitter feeds. Parents of children who have Down syndrome were outraged and confused. The collective concerns expressed fear over what a story like this does to overall image of people with intellectual and developmental disabilities. To our kids.
These two stories, published during (of all times) Down syndrome Awareness month, could have a disastrous effect on the public conscience. All our hard work for 31 days, down the drain in an instant, because of two women, and the news outlet who chose to share their stories.
I too was concerned; concerned about the undoing of our awareness campaigns and the polar opposite of what we’ve been trying to say getting much more attention. But, I’m also concerned for these women and their children, especially the 47 year old man who has been bounced around from institution to institution all of his life.
My heart aches for what it must be like for him. To be told that your family “loves” you but feels you are too big of a burden. His only way to communicate with them seems to be to stage physical protests. Did it ever occur to this mother that her son was trying to tell her he was afraid of the airplane? Could that be why he sat in the isle and wouldn’t move? Since she hasn’t spent much time with him, and we’ve all read the horror stories about institutional life and the lack of attention, much less education that comes with it – I’m guessing she doesn’t get it.
But that’s MY truth. How I feel about the stories, colored by what I’ve learned and how I feel about my son.
My truth also questions the reason for printing these stories smack dab in the middle of Down syndrome Awareness month. So I looked. My first realization was that these stories were published on a sub-section of the website that is aimed at females. Considering the pro-abortion stance both articles take, that could be a clue as to why the editors wanted them told. Maybe THEIR truth is represented by the moral of these stories: Abortion is better than life with a disability.
A search among the other articles published produced several other stories about Down syndrome this month:
- Brothers with Down’s syndrome refused membership of bowling club ‘because they make other players uncomfortable’
- By Jeff Farrell For Mailonline – October 2nd 2014
- The little girl with Down’s syndrome who has learnt to talk, walk and even dance by copying her sister
- By Madlen Davies for MailOnline – October 22nd 2014
- Incredible moment boy, eight, with Down syndrome scores a touchdown in high school team’s last play of the season
- By Lydia Warren for MailOnline – October 20th 2014
- Two teenagers and life-long friends are the first students with Down Syndrome to be crowned homecoming king and queen in Florida
- By Alexandra Klausner for MailOnline – October 15th 2014
- Shorter pant legs, a wider fit and no buttons or zippers: The fashion lines designed specifically for people with Down syndrome
- By Margot Peppers for MailOnline – October 13th 2014
These stories were published in other sections like news, and health.
Another story about disability also showed up in the search. The child had a different disability, not Down syndrome, but pushes the pro-abortion stance.
- ‘We didn’t want a child who wasn’t going to do things that normal children do’: Couple say they would not have gone through with pregnancy if they had known the pain their disabled son has to endure
- By Amy Oliver for The Mail on Sunday – October 11th 2014
Any guesses as to which section it was in?
With that knowledge, we can understand one part of the lesson to be learned: publishers have an agenda too.
The bigger issue for me is that while these stories make us uncomfortable, they reflect the ideas and feelings, – the real truth – of real people. They give us insight into how much work still needs to be done before people with intellectual and developmental disabilities are seen as real human beings with strengths, faults, and feelings, just like the rest of us. We can see how much awareness, support, and training still needs to be done.
My 2 Cents:
Yes, these stories make me uncomfortable. They make me sad and angry at the same time. But, instead of criticizing these women for sharing their stories, I choose to use them as inspiration. I wish forgiveness for them and understanding for their children. I sincerely hope that they get the help they need.
I hope those who read the stories will also see the work the rest of us are doing. I hope they can see these narratives for what they are – one person’s story, one possibility that does not define the group or diminish the other truths out there.
I hope other parents of children and adults who have Down syndrome are inspired to share their stories of love and laughter – teaching and learning – good and bad.
Sometimes the truth hurts.
That doesn’t mean it’s not real.
It just means there’s more work to be done.