Often siblings of children with a chronic illness are called “shadow children” because they live in the blind spot of their parents. They are often alone with their grief and put their own needs aside for their siblings’ needs. My name is Kristine Holm Laursen, but just call me Krisser. I am now 26 years…
Ingunn Westerheim and Rebecca Tvedt Skarberg from Norway are the recipients of this year’s Black Pearl Volunteer Awards, an international award that recognizes their volunteer efforts for people with the rare condition osteogenesis imperfecta (OI). How it all started We do the interview on Zoom, since both ladies are at risk for Covid19. But what…
It’s not something I do very often. But every time I move to another apartment, I’m thinking “never again”. It’s close to a returning nightmare. Needing help with most of the practical stuff because of my disability, doesn’t make it any better. For every box that needs to be moved or carried, every lamp that…
Every catastrophic film, every war novel, every graphic novel about dystopian futures is for me an opportunity for an imaginative exercise on my death. If you have been a kid with a disability and then a girl with a disability, to finally become a woman with a disability, then you have grown up with the…
Since 2019, the Netherlands has an unofficial Minister of Disability Affairs. Rick Brink who has OI and is using an electric wheelchair, won this appointment during the broadcast of the television programme ‘De minister van Gehandicaptenzaken’ (The Minister of Disability Affairs). Brink was elected by a jury, including former cyclist Leontien van Moorsel, cabaret artist…
