Interview with Lea Jebali, intern at Rare Diseases International (RDI) Who are you and what is your relationship to OI? My name is Léa, I am 22 years old and I have OI. As a child and teenager, my family and I went to many OI events at the regional association in Germany. When I…
Ableism turns disabled people into “others” – and helps non-disabled people stay “normal”. Through the hashtag #AbleismTellsMe different disabled people told their stories about discrimination. What exactly is Ableism? And what is the difference between that and hostility to disabled people? This is what Rebecca Maskos, from Germany, tries to explain in this article. It…
Unsolicited advice for non-disabled parents of disabled children By Haley Brown, artist from the US Unsolicited parenting advice from someone who isn’t even a parent is…everyone’s favourite thing, right? I know, I know, it can be really rude and annoying. But I wrote this from a place of deep love – for disabled kids AND…
Claudia Finis is a member of the German OI-association DOIG and a volunteer for the OIFE. With the input from two other parents (Janina and Sven) who have OI themselves, she wrote an article about parenting a child when you have OI. The article was first published in the German magazine “Durchbruch” (Breakthrough). It has…
Erwin Aljukic is an actor, dancer, speaker and fashion journalist. Since 1998 he can be seen on TV, in the cinema and at the theater. In addition to acting, he studied fashion journalism and has been working as a freelancer ever since. In 2014 he devoted himself to contemporary dance. Aljukic has been a permanent…
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…
![[Image shows a gouache/ink/pencil cartoon illustration I made in my sketchbook. Against a black background, a yellow orb frames an illustration of me sitting on the floor, crooked white femme with glasses and hair in a messy bun. I look down lovingly at the ghost of kid-me sitting in my lap, and hold the back of her head gently. She looks back at me and holds juniper (fluffy black cat) in her lap. Around the orb is abstract decorative designs of yellow vines, sparkles, and dots.]](https://oife.org/wp-content/uploads/2021/11/Haley-Brown-illustration-877x470.png)
