BBB leader Caroline van der Plas is a guest at Knot & The Lion, because “itis in every talk show, including us,” says host Paul de Leeuw. Brian clearlyagrees with the politician at the talk show table. “It seems as if no onesupports the farmers anymore,” says de Almouder, who works in the cateringindustry and at a theater group. “What are you going to do to say to thecabinet: support those farmers now.” Lizzy from Delft, as a table lady, asksthe disruptive questions. “This program is called Knoop & De Leeuw,” she saysto De Leeuw, “but are you in a knot yourself?”
While Brian is already speaking, the camera lingers on De Leeuw’s beaming headfor half a minute. Nico is behind the camera, he also conducts house bandWimpie & de Domino’s.
Knoop & De Leeuw (NTR) is a talk show with, and partly made by, people withdisabilities. Including people with Down syndrome, like Lizzy. Shown in thefive days until Christmas on the timeslot of Khalid & Sophia_just after seveno’clock, on NPO 1. The show will not be recorded live, _NRC saw the firstepisode.
Programs with people with intellectual disabilities are no longer a rarity.Usually people with Down syndrome star, and the program has a play on words inthe title. Next month, January 3 on SBS6, the second season of Down the Road, an originally Flemish format in which a group of people with down travel andtake on challenges. In the Netherlands, artist Gordon is the presenter andtour guide.
Talk show **Knot & The Lion ** is partly made by people with disabilities. Photo Annemieke van der Togt
The image of down has been positively influenced by TV programs, experts say,but there is a downside. Many TV formats ignore the physical and mental issuesthat many people with Down and their environment struggle with. A comment fromGordon in Op1 earlier this month – “if only everyone was a little down” –angered many involved.
Gordon later said, in a reaction to RTL News, that he meant that society is sosour. People with Down syndrome would be “not bothered at all” by this. He didthink that the shadow side deserved attention, so he considered doing ithimself. “Down may be presented too up.”
Lars Duursma, communications expert and entrepreneur, vented his annoyanceabout “exploiting” people with Down for “commercial entertainment” last weekin his podcast and in a series of Twitterposts.Duursma has a brother, Jesper (37), with Down syndrome. “The remark ‘You’relucky to have such a cheerful home’ comes from the image that TV programsevoke.”
Mostly people with a direct relationship with someone with Down responded inagreement on Twitter: the programs often give a carefree picture. Those whoare underexposed, according to Duursma, are the people with Down who cannotexpress themselves properly, who are not potty trained, who suffer from earlydementia, behavioral problems or depression. Or people who do not have Down’ssyndrome, but have another disability. Duursma: “Is that because they are lesscuddly?”
One door further
“I understand the criticism,” says program maker Johnny de Mol. From 2008 heshowed for the SBS program Down with Johnny years of wish fulfillment withpeople with Down, but also people with an autism spectrum disorder. “I alwayswent a step further, with the more difficult cases. Sometimes they can barelycommunicate. Of course you look for people who can do that for television. Youhave to be that honest.”
The programs that De Mol made were still quite new in their kind at the time.“You are treading on thin ice. There was already criticism at the time, frominformal carers and institutions: ‘Come here and see what it’s really like’.You learn a lot from that.”
Pediatrician Michel Weijerman is ‘netly’ positive about the contribution ofprograms such as Johnny de Mol’s in the past decade. “He put his heart intoit. But equally important sometimes seems the question of how Johnny, orGordon, stands out by doing this. No one is without ego, I also like beingcalled ‘the down doctor of the Netherlands’. I also recognize that withparticipants, who think it’s great that they can go to Gordon. Very good. Andthey are very proud to be on TV.”
Weijerman works at the expertise center of the VUmc in Amsterdam, among otherplaces. According to him, the formats have certainly not had a bad influenceon the image. “Parents who are expecting a child with Down usually only knowabout it through TV. Then you discuss that sometimes an unrealistic favorablepicture emerges. Or you can see that they are afraid that the perspective thatcan be seen on TV is out of reach. Then you can talk about something.”
According to Weijerman, the large increase in abortions predicted after theintroduction of the non-invasive prenatal test (NIPT) five years ago, whichmakes it easy to detect Down syndrome early, has not materialized. This ismore the case abroad, such as in Belgium. According to Weijerman, this is theresult of the perspectives offered by the healthcare system and the greatacceptance in the Netherlands. “As far as the latter is concerned, you couldwell mention the role of TV programmes”, although this has never beenspecifically investigated.
Incidentally, there has been a declining trend in births of babies with Downsyndrome since the beginning of this century, via abortion. But the NIPT hasno amplifying effect on this decrease, concludes doctor Maurike de Groot inthe thesis for which she will receive her doctorate on 11 January. In the mostrecent year for which data are available (2018), 167 children were born withDown syndrome. Regina Lamberts of the Down Syndrome Foundation: “For a longtime we could say that there were more than 240 babies per year, now weestimate 140.”
In Down the Road a group of people with down goes on a journey. Image VRT
On the eve of the introduction of the NIPT, the EO released the four-partseries in 2016 The Last Downer out, in which two reporters went out withdown together with TV maker Jos de Jong. These were intense subjects andconfrontational interviews about abortion, healthcare costs, serious cases ofDown syndrome and the possible extinction. “They really tried to visualize itall,” says Lamberts. “But yes, does that stick with the general public?”
Both experts call the fact that only 1 percent of people with Down syndrome(there are about 13,000 in the Netherlands) eligible for TV, as Duursma statedon Twitter, an estimate that is too narrow. “You may see 1 percent, but thatis something else,” says Weijerman. Lamberts only shares Duursma’s criticismwhen it comes to Gordon’s lack of tact. “Let’s face it: you just can’t alwaysdo it right. But how he talks nonsense on talk shows that everyone could use alittle down. That just hurt a lot of parents.”
Professional singing career
Not everything Gordon does offends experts. In the first season, he lovinglybut fairly frankly helps contestant Lizzy to lose her dream of a professionalsinging career. Lizzy, also the table lady in Knoop & De Leeuw, isdisappointed, but recovers after a hug from Gordon. “Of course he knows aboutthat, whether you can sing,” says Lamberts. Weijerman: “Being honest is reallyimportant, so yes: good from Gordon.”
Lamberts puts the phone on speaker and asks colleague David de Graaf, who hasDown’s syndrome, what he thinks of the programmes. “Following your dream”,that’s what it’s all about. The less pleasant things about down do not need tobe discussed anymore, according to him. What are those? David: “Bullying.”Fortunately, that is no longer the case, he says.
Benthe, aged 18, is almost done with school and will then start assistedliving in a learning, living and working initiative. “No one has Barbiesthere, she already saw, so they all have to be removed from her now,” says herfather Geert van den Heuvel on the phone. “She mirrors herself very much toothers. I just notice that she pulls herself up to that, and gets happy whenshe recognizes people as herself. On the street, but also on TV. That is themost important thing: what she thinks of it.”
It’s twofold, because he also sees that only people with the best expressiveskills come to the surface in TV programs. But sure Down for Dummies byBarry Atsma, whose now deceased brother was also mentally disabled, and theFlemish Down the Road also show the dark sides, according to Van den Heuvel.“So beautifully and carefully made.”
According to Edwin Janssen, father of Stijn (13), “they pick out the goodones” for TV. “If you have six who only want to go down a slide, you arequickly bored. It is very clever what these guys and girls can do. But thereality is often different.” Actually, there should be a disclaimer with theprograms, he thinks. “Something like: ‘What you see here is not a realreflection’. Living with Down is also very tough, that doesn’t really show upon TV.”
It would be nice, says Janssen, if Stijn ever reached the thinking level of asix-year-old. “When you see it on the iPad you think: that’s smart. He knowsvery well where to look for the volume knob, because he wants everything loud.But don’t ask him to go to the toilet alone, then everything will be covered.He is very cheerful very often, does his thing well. But you always have twoeyes on it.”
The picture is never complete, says Lamberts. She can’t think of a programthat covers everything about down. “That is impossible. But for visibility andacceptance, the programs have been just fine. Someone who is now allowed towork in a store, because they have seen that it is possible. Television hasreally contributed to emancipation here, without a doubt.” But she also seesthat a certain saturation has come. “Then there will automatically be atipping point, when people will think: yes, but there is also another side. Ithink we are there now.”