He had thought it before, communication coach and podcast makers Lars Duursmatells RTL Nieuws. This week he decided to draw attention to it in his mediapodcast and in a personal threadTwitter.
The immediate cause was a comment that presenter Gordon Heuckeroth made as atable guest at Op1. Among other things, he was invited to promote the newseason of Down the Road, which will be broadcast by SBS6 later this year.
At the talking table, he said, “If only we all had a little down, the worldwould be a much better place.”
‘Down is not fun’
Asked what he meant by that, Gordon added: “The sincerity, the honesty, thepurity, the love, the pure human being without prejudice.”
The comment fell completely wrong with Lars Duursma. “The world definitelywouldn’t be better off if we all had a little bit of down. It’s a limitation,which isn’t a nice thing to have at all.”
Duursma has seen this up close almost all his life. “My little brother Jesperspent the first year of his life almost exclusively in the hospital. He hasheart problems. Later he also had depression and testicular cancer. All thingsyou see more often in people with Down.”
He continues: “The people portrayed in programs are – say – the ChampionsLeague. Smart, easy to understand. Viewers often find them very moving: lookat all those lovely people with Down.”
You don’t see people who can’t talk, aren’t potty trained, have majorbehavioral problems or stuck at the thinking level of a two-year-old, Duursmawrote on Twitter.
Television darlings
Down with Johnny, Upside Down, Down for Dummies and thus Down the Road, awhole list of titles that have appeared on Dutch TV in recent years, in whichyoung people with Down syndrome generally play the leading role. “They arereal television darlings.”
For parents of people with Down’s syndrome, many of those programs aredownright confrontational: “On TV they constantly see people doing all kindsof things that their own child will never be able to do. That hurts. And fromthe environment, comments such as: You’re lucky to have such a cutie in yourfamily.”
To laugh?
His own parents are consciously watching, but not at all: “Why so manyprograms about Down syndrome and much less about other mentally handicappedpeople? Can you sometimes laugh more at people with Down syndrome, they askthemselves. While they have been caring for them all their lives: what ishappening with our son when we can no longer care for him?”
Jesper does not belong to that ‘Champions League’ that you usually see on TV:”My brother is super sweet and handy in many ways. He can Facetime, forexample. And send apps, although sometimes you have to decipher what he meansexactly. But purely “Looking at his IQ, he is not that smart. He needs a lotof help and guidance. He can talk, but is not easy to understand foreveryone.” Lars emphasizes: “My parents care for him with great love, but thatis a heavy task that rests on their shoulders.”
Reaction presenter Gordon: ‘Integrity is paramount’
“We are aware that there are degrees, very serious cases too. And that is alarge group. I realize that it must be a difficult task for parents when achild needs so much care,” said presenter Gordon Heuckeroth when asked on thephone.
“I would really like to make a beautiful documentary about that group, showwhat Down’s syndrome is like. I heartily welcome that. Because it’s not justpeace and quiet.”
The presenter therefore understands the criticism that the various televisionprograms together provide a one-sided cliché image: “Down is perhaps presentedtoo up.” He says about his program Down the Road: “We don’t exploit people forentertainment, integrity is paramount. I think it’s great to be able to showhow this group can participate, fall in love, want to get married.”
All a little down?
The program is close to his heart, says Gordon: “In the new season, Daphnetells her parents that she has decided not to have children. Because she sees- she says – what she herself ‘did to her parents’. That kind of I find itvaluable to visualize dilemmas.”
About his comment ‘everyone was just a little down’, Gordon wants to say: “Ifyou see the group in my program: honest, sincere and yes, also happy…then Ithink society is souring, but it doesn’t bother them at all. That was what Iwanted to say.” Finally, laughing: “That group gives me more love than I getduring a year of walking in Amsterdam.”
SBS also emphasizes the good intentions in a response and says: “Down theRoad revolves around young people with Down syndrome who – each in their ownway – deal with themes such as adventure, friendship, love and newexperiences.”
‘Must be understandable’
Regina Lamberts is director of the Down Syndrome Foundation. “We often receiverequests to help find people to make a television program about. Then therequirement is invariably: they must be able to speak intelligibly. Andpreferably also be able to answer questions well.”
But then a lot of people drop out. Lamberts: “Roughly 80 percent havedifficulty articulating or finding words, or both.”
Whether it’s because of ‘one-sided’ television programs or not, she certainlyrecognizes that there is a wrong image of people with Down syndrome. “Thosechildren with Down syndrome are always so cheerful, you often hear. Then Ithink: yes, bye!”
And that can certainly be annoying for parents: “If you have a child whodoesn’t fit into the picture, you spend the whole day explaining that yourreality is different.”
All different
She continues: “There is simply no such thing as ‘the person with Down’ssyndrome’. They are people who have some of the same characteristics inappearance, but who are otherwise very different. resemble their parents.”
They all have a disability and they all need guidance, says Lamberts. But,”That ranges from a little bit to 24/7 and everything in between.”
A few thousand likes, hundreds of retweets and many approving reactions fromparents and healthcare workers: Lars Duursma’s story does not seem to stand onits own.
Honest is better
“As a mother of a beautiful boy with Down with a very low level, I often runinto that wrongly painted image, someone responds on Twitter. “A fairer imagewould be better for people with Down and their caregivers.”
Another writes: “From the professional field I have seen them come and go: theenthusiasts who like to work with people with Down syndrome. Drinking coffeetogether and cuddling a lot. Until they get to know the other 99 percent.”
No ill will
So Duursma loosens things up. He would like to emphasize: “I think that peoplewho make such programs do not do so with ill will. They sincerely want to makea beautiful program. But the misleading cliché image created by all thoseprograms together is really harmful.”