Today, on the Huffington Post…

Dutch Minister of Health: if National screening program leads to disappearance of people with Down syndrome, society has to accept thatHappy

“Minister Schippers asks society to respect those who judge a life with Down syndrome unworthy. But what about those who find themselves on the other side, those who are judged by their genetic disposition? People with Down contribute to our communities and are celebrated by their families. Screening to enable selection reduces them to disposable human waste. People with Down should be respected too.

I happen to have two kids with Down syndrome. Their continued existence as a group is made entirely dependent upon the value judgment of others. If a government encourages the idea that certain people can be considered unworthy of life, that message doesn’t magically disappear at the time of birth. That negative stigmatization continues after birth and takes root in all aspects of society. The discussion in a morally and socially responsible society should not be about how to eradicate a group and ‘legally’ get away with it. It should be about creating equality and better opportunities for everyone.”

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Niet alle Down-ouders zijn positief!

Vanmiddag ontving ik onderstaand twitter bericht als reactie op mijn opinie in het NRC. Dit is mijn antwoord.

Ik ben moeder, geen wetenschapper, maar ik praat over wetenschappelijke studies onder een populatie die aantonen dat de ruime meerderheid van mensen met Downsyndroom en hun familieleden bovengemiddeld tevreden zijn met hun leven. Ik verwijs naar medisch onderzoek waaruit blijkt dat het afbreken van een gewenste zwangerschap tot psychische schade kan leiden. Ik haal medische definities aan die ‘ernst’ definiëren, te denken valt aan IQ, levensverwachting, etc. Ik baseer mijn betoog dat routine downscreening niet in Volksgezondheid past op wetenschappelijk onderbouwde argumenten.

U bent medisch specialist. U praat over een individu. U verwijst naar een brief in de krant uit 2013. Geschreven door ouders met een zoon met Downsyndroom die ‘steeds een triest gevoel krijgen bij de geboorte van een nieuw kind met Downsyndroom’. En dit zou de basis moeten vormen van publiek gefinancierde routine screening op Downsyndroom? Ik denk dat u zich teveel laat leiden door emotie.

De beslissing om een groep of een aandoening aan te wijzen voor routinescreening binnen Volksgezondheid is een politieke keuze die gebaseerd zou moeten zijn op medische feiten. Het doel zou moeten zijn ‘voorkomen van leed’ en de criteria ‘ernst’ van de aandoening. Individuele gevallen of achterhaalde stereotypering zou niet de basis mogen vormen in een beslissingsproces (invoering NIPT) dat mogelijk 100 miljoen Euro per jaar kost en het leven van tienduizenden mensen met Downsyndroom en hun familie zal beïnvloeden.

Wat vinden mensen met Down van de Down-test?

Mensen met Downsyndroom zijn individuëen. Routine screening baseert zich echter op stereotypes en aannames over kwaliteit van leven. De test ontneemt hen het recht op een ‘open toekomst’.

De stemmen die we missen in de discussie over de Down-test zijn de meest belangrijke:  mensen met Downsyndroom.

Sociale beperking: gevolg van segregatie of genen?

In Nederland gaan slechts 7% van kinderen met het Downsyndroom naar regulier onderwijs (Bron: TNO). De overige 93% gaat naar speciale scholen, speciale kinderdagcentra of andere instituten.

In de Verenigde Staten is het recht op een openbare passende opleiding in 1975 van kracht gegaan met IDEA (Individuals with Disabilities Education Act). Dit resulteerde in een overgrote meerderheid van kinderen met Downsyndroom in het reguliere schoolsysteem.

Inclusief onderwijs is goed voor de ontwikkeling van kinderen met Downsyndroom.

Nederland breidt routine prenataal onderzoek naar Downsyndroom uit met invoering van de NIPT dit jaar. Keuzehulp voor zwangeren bestaat uit informatie waarin wordt vermeld dat 90% van jongeren/volwassenen met Down moeite hebben met de omgang van anderen.

Gevolg van genen of van segregatie?

We moeten eindelijk van het systeem van segregatie afstappen en het potentieel zien van mensen met Downsyndroom.

‘Don’t mess with me’: MMA fighter with Down syndrome sues to get back in the ring

Garrett Holeve, a Mixed Martial Arts fighter with Down syndrome, is fighting for the right to compete in sanctioned events.

Stian Roenning photography
Garrett Holeve, a Mixed Martial Arts fighter with Down syndrome, is fighting for the right to compete in sanctioned events.

A 24-year-old Mixed Martial Arts fighter with Down syndrome, Garrett Holeve says he’s ready for a fight, but to him, his fiercest opponents aren’t in the ring: They’re the people stopping him from climbing into it.

“I can (do it). Don’t mess with me,” Holeve told TODAY.com. “I’m a blue belt.”

Holeve is backing up his fighting words with actions. Armed with a lawyer and the support of family members and fans, he’s taking on the Florida State Boxing Commission and other organizations he views as standing in his way. Last August, minutes before the opening bell, the boxing commission ordered the cancellation of a bout between Holeve and David Steffan, a Special Olympian with cerebral palsy.

Holeve’s father, Mitch, said “ignorance” led to a cease-and-desist letter that’s preventing his son from competing in sanctioned events.

“This is a fair match-up,” he said of the bout between his son and Steffan, emphasizing that amateur fights have built-in rules to protect fighters. “We think that their limitations kind of offset themselves.”

Garrett Holeve, 24, loves Mixed Martial Arts fighting. “It makes me feel pumped,” Holeve said.

Stian Roenning photography
Garrett Holeve, 24, loves Mixed Martial Arts fighting. “It makes me feel pumped,” Holeve said.

With multiple soft-exhibition events under his belt, Holeve — whose nickname is G-Money — has spent four years training at the American Top Team martial-arts academy in Weston, Florida. Although his father acknowledged that Garrett has a slower reaction time than most fighters, he said he believes it’s all about the matchup.

“He’s not trying to take on [three-time UFC welterweight champion] Georges St-Pierre,” Mitch Holeve told TODAY.com.

At least not yet. “I want to,” Garrett said.

In February 2013, Holeve took on “Monster” Mike Wilson in a three-round bout. The match opened with Wilson’s haymaker to Holeve’s head, but Holeve remained on his feet and fought on, going the distance. At the end, the ref declared both combatants winners.

“It makes me feel pumped,” Holeve said.

The August fight with Steffan was meant to be a follow-up to Holeve’s bout in February.

In response to critics who call Mitch Holeve irresponsible for allowing his son to fight, the dad replied, “They’ve never met my son. If they were in my shoes, and they did anything different, then I think they’d have to do deal with the consequences of not doing what he loves to do.”

His son added, “My dad’s not crazy. They’re the ones who are crazy.”

The National Down Syndrome Society also has Holeve’s back, issuing a statement that says the organization “stands behind Garrett Holeve … in his right to compete in Mixed Martial Arts.”

In the statement, NDSS vice president Sarah Hart Weir says the organization is “concerned that Garrett is being discriminated against based on his disability, in this case Down syndrome,” adding he is asking for “full-inclusion and full-participation in the sport of his choosing, and we stand behind Garrett and his family as they fight to ensure Garrett can achieve his own hopes, dreams, and aspirations.”

In addition, more than 111,000 people have signed a Change.org petition against the boxing commission. Even Ultimate Fighting Championship Hall of Famer Stephan Bonnar, who has more than 93,000 Twitter followers, tweeted his support for G-Money last month. “Please sign petition to let @GarrettsFight aka G$ fight!!” he wrote, using the hashtag #letgarrettfight.

According to the petition, last August’s fight with Steffan was called off “due to lack of sanctioning by one of Florida’s Amateur Sanctioning Organizations, the World Fighting Organization.”

TODAY.com reached out to the World Fighting Organization for comment, but did not receive a reply as of Friday afternoon.

Tajiana Ancora-Brown — a spokeswoman for the Florida Department of Business and Professional Regulation, which includes the Florida State Boxing Commission — told TODAY.com that her agency disputes allegations that Holeve was singled out because of his Down syndrome.

As he awaits resolution of his lawsuit, Garrett Holeve is trying to stay involved in his sport in other ways.

Stian Roenning photography
As he awaits resolution of his lawsuit, Garrett Holeve is trying to stay involved in his sport.

“The Florida State Boxing Commission was informed that an Amateur Sanctioning Organization (ASO) was hosting an event and elected not to sanction all of the bouts scheduled for the event,” Ancora-Brown said in a statement via email. “ASOs are independent organizations that require licensure from the commission to sanction amateur combat sports events in Florida.

“The commission does not get involved in the sanctioning decisions of ASOs. As a regulatory agency, we take any occurrences of unsanctioned bouts very seriously. Upon becoming aware of the unsanctioned bout, we quickly took action. In fact, the issuance of the Cease and Desist Notice as a result of an unsanctioned bout was not related to individual participants.”

On behalf of Holeve, disability-rights lawyer Amanda E. Heystek is suing the boxing commission and claiming discrimination. She told TODAY.com that local ASOs have been placing the blame on the boxing commission, compounding the problem.

“One of the individuals who represented the WFO basically said they basically serve at the pleasure of the state, [that] they can’t do anything without the state’s blessing,” she said.

Because the trial won’t begin until Dec. 8, Garrett Holeve has been trying to focus on the sport in other ways. At his training center, he’s been teaching martial-arts techniques to kids aged 3 to 9.

“I feel good that I’ve been helping them,” he said. “I’d like to do it more, if I can.”