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Column Van Marcel Kolder - I am what I am

Het moment dat het voor mij duidelijk werd dat het allemaal anders zou kunnen, was het moment dat Mayim, mijn gehandicapte dochter, via haar spraakcomputer vertelde: “papa, ik heb je vandaag niet meer nodig, ik kan nu alles zelf, met mijn nieuwe elektrische rolstoel en mijn spraakcomputer. Ik ben niet meer gehandicapt.” En dat terwijl ze, in mijn ogen, ernstig beperkt was. Vanuit haar optiek naar dingen leren kijken was mijn kantelmoment. Al op haar zesde - in 2004 - koos ze bewust voor eigen regie over haar doen en laten.

I am what I am

Acht jaar later keek ik met mijn dochter naar de openingsceremonie van de Paralympics. Shirley Bassey zong I am what I am. Tegelijkertijd werd een reusachtig beeld onthuld van een ‘misvormde’ vrouw, als moderne versie van de armenloze Venus van Milo. Het beeld van beeldhouwer Marc Quinn schreeuwde “ik ben wat ik ben!” Mijn dochter en ik keken elkaar veelbetekenend aan. Nobelprijswinnaar Stephen Hawking kwam daarna in beeld. Hij zat klaar in zijn rolstoel, tussen diverse gehandicapte sporters, en bediende met zijn ogen zijn spraakcomputer. Ik quote zijn computer:

The Paralympic Games is about transforming our perception of the world. We are all different, there is no such thing as a standard or run-of-the-mill human being, but we share the same human spirit.

What is important is that we have the ability to create ... however difficult life may seem, there is always something you can do and succeed at.

- Stephen Hawking

Nederland grossierde die weken in paralympische medailles, maar het kwam amper in het nieuws. De NPO toverde voornamelijk politieke debatten op de buis, die steevast gingen over bezuinigingen op de AWBZ en over het afschaffen van het Persoonsgebonden Budget (PGB). Een budget voor mensen met een flinke zorgvraag, die hen in staat stelt zelf te kiezen welke zorg ze inkopen.

Gemis aan visie op eigen regie

Wat me opviel is dat de debatten niet gingen over:

• een visie op levensbrede en levenslange zorg,
• de mogelijkheden en kansen voor langdurig gehandicapten om te kunnen participeren in de maatschappij,
• zorgvernieuwing,
• samen dingen doen,
• en al helemaal niet over autonomie/eigenaarschap en eigen regie.

De politiek kan nog steeds leren van hoe deze sporters, mijn dochter en velen met hen, in het leven staan: als kansrijke talenten. Talenten die meer moeite hebben de vooroordelen te overwinnen dan met hun eigen handicap. Maar hoe krijg je het denken gekanteld zoals mijn dochter dat van nature doet? Ondanks haar zware handicap doet ze mee in de maatschappij. Ze twittert regelmatig dat ze tandarts wil worden. En als het niet met haar eigen spastische handen lukt, dan maar met een robotarm, vindt ze.

Mijn kanteldoel is om overheid, zorginstellingen en organisaties zover te krijgen dat ze geen stap terug doen, maar een stap vooruit gaan. Mede-aanjager en inspirator worden van ingrijpende veranderingsprocessen in het systeem. Niet ‘over’ deze mensen praten maar ‘met’. De overheid zal bijvoorbeeld zijn eigen klokkenluider moeten worden. Want echte verandering komt vooral van binnenuit.

In 2012 startte de landelijke werkgroep ‘Eigen Regie’ op initiatief van Margit van Hoeve, die ik leerde kennen vanuit de kanteling in de zorg. Er verzamelde zich al snel een bonte groep van divers pluimage: politici, bestuurders, zorgverleners, zorgvragers en ondergetekende. In korte tijd ontstond een krachtige visie op ‘Eigen Regie’ en deze werd begin 2013 aan de Tweede Kamercommissie Zorg overhandigd. Hieronder de hoofdpunten.

Eigen regie als basis

Ieder mens moet in staat gesteld worden zijn eigen leven te leiden, eigen keuzes te maken en mee te kunnen doen in de samenleving. Dat iemand daarbij afhankelijk is van ondersteuning mag nooit betekenen dat een ander invult wat iemand wil. Eigen regie strekt zich uit over alle levensterreinen, maatschappelijke rollen en relaties die iemand aangaat. Eigen regie gaat uit van de intrinsieke waarde van ieder mens. Om deze waardigheid tot zijn recht te laten komen, moet die waardigheid zelf het startpunt zijn.

Eigen regie, eigen kracht en eigen verantwoordelijkheid
De termen eigen regie, eigen kracht en eigen verantwoordelijkheid worden vaak door elkaar gebruikt. Deze verwarring van termen kan ten koste gaan van eigen regie en maakt daarnaast ook de rollen onduidelijk van de betrokken partijen: mensen zelf, hun omgeving, dienstverleners en overheid.

Onderscheid eigen regie en eigen kracht

Eigen regie gaat uit van wat iemand wil met zijn leven. Eigen kracht gaat over de mogelijkheden die iemand heeft om zijn problemen aan te pakken, samen met het eigen netwerk. Wat iemand wil, is ruimer dan waartoe iemand zelf, samen met zijn netwerk, in staat is of kan realiseren. Om eigen regie te kunnen voeren moet er wel een beroep worden gedaan op eigen kracht. Wanneer echter alleen wordt uitgegaan van eigen kracht loopt men het risico voorbij te gaan aan wat iemand wil. Eigen regie is dus wat anders dan het zelf regelen en organiseren van je leven.

Onderscheid eigen regie en eigen verantwoordelijkheid

Eigen verantwoordelijkheid gaat over de vraag wat iemand zelf moet doen. In de volksmond betekent eigen verantwoordelijkheid vaak dat je alles wat je zelf kunt doen, ook zelf mòet doen. Dit misverstand kan leiden tot het afschuiven van de (gezamenlijke) verantwoordelijkheden. Als mensen met een beperking alles doen wat ze zelf kunnen, betekent dat vaak dat er geen tijd en energie overblijft om een gewoon leven te leiden. Participatie in de samenleving komt dan in het gedrang. Eigen regie over eigen leven voeren kan betekenen dat je juist het regelen van bepaalde zaken uit handen geeft om een normaal leven te kunnen leiden.

Eigen regie staat met de vraag wat iemand zelf moet doen, maar eigen regie is wel een ruimer begrip dan eigen verantwoordelijkheid.
Eigen regie gaat dus over de vraag: wat wil ik met mijn leven? Eigen kracht gaat over: wat kan ik? En eigen verantwoordelijkheid gaat over de vraag: wat moet ik zelf doen? Daarbij behoort eigen regie het uitgangspunt van beleid te zijn.

Het Kantelingsalfabet

Dit is een hoofdstuk van Het Kantelingsalfabet. Een unieke co-creatie van meer dan 100 auteurs (waarvan vier uit Almere), redacteuren en partners die, vanuit de gedachte ‘Verandering begint met delen, binnen vier maanden samen een boek realiseren met meer dan 90 hoofdstukken over kantelen. De hoofdthema’s zijn; persoonlijk kantelen, samenleving, onderwijs en organisatievernieuwing. Het boek wordt begin april uitgeleverd.

https://www.dealfabetboeken.nl/het-kantelingsalfabet


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Grand final return thefocus for Hawks coach

AS the dust settles on Perth's grand final sweep of Illawarra, the message coming out of the Hawks camp michael kors taschen is that Sunday's defeat is the beginning and not the end.

There's no doubt being on the wrong end of a 3 0 sweep won't look michael kors handbags australia good in the history books, or give a fair indication of how competitive the polo ralph lauren australia series was, but coach Rob Beveridge remains positive about the future. In fact, when the disappointment of a grand final defeat subsides, the 2016 17 season is arguably Beveridge's finest achievement as a coach.

To very unexpectedly lose the reigning MVP Kevin Lisch would have been a big enough blow, but for an all time great in Kirk Penney to follow him out the door would have seen most clubs slip dramatically. It's what most preseason experts predicted so, to not only reach the playoffs in consecutive seasons, but go one better is a remarkable achievement.

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While imports Marvelle Harris and Michael Holyfield may well move on, Rotnei Clarke is strongly tipped to stay while veterans Oscar Forman and Tim Coenraad have also expressed a desire to stay with the club if offered new deals.

The rest of the roster is already under contract, leaving Beveridge confident he has the nucleus of a title wining team.

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