Written by Silvia Falcier, OIFE Youth coordinator Whoever is reading this article is probably holding their phone with fingers that curl in unusual ways as they stretch upward – or maybe the reader knows someone with this unique characteristic. One thing is certain: if we are here to read about Osteogenesis Imperfecta, we are also…
Interview with Agnieszka Czoch-Tokarczyk, President of Association of People with Brittle Bone Disease – Poland Who are you? My name is Agnieszka Czoch-Tokarczyk, I am the president and one of the founders of the new Association of People with Brittle Bone Disease-Poland (together with Karolina, Ewa, Magda and Izabela). In Polish they are called Stowarzyszenie…
OI impacts much more in our lives than just the direct health related aspects. OI can cause temporary or permanent mobility issues. These disabilities can create other challenges like inaccessibility, lack of independent living support, economic and social problems as well as discrimination and ableism. OIFE’s volunteers are therefore also engaged in advocacy on other…
“Disability Burn-Out”: Internalized Ableism and its consequences! By Raul Krauthausen, disability activist with OI A disability can be stressful and sometimes trigger burnout. Often, one’s own internalized ableism plays a major role – in other words, the pressure of having to gain a raison d’être through performance and functionality. This can rule a lifetime. It…
On June 27 OIFE volunteer Rebecca Tvedt Skarberg represented EURORDIS at the EU Meeting “A Union of Equality: Disability Rights and Strategies”, which was a seminar on examples of how to reach equality by using strategies to realize the rights of persons with disabilities. In order to highlight and raise awareness of the EU strategy…
Written by Malene Sillas, OIFE Board Member. Growing up from childhood, becoming a young adult, I’ve always felt that whatever I do, it feels like I’m the first person to do it. I remember that the first time I felt that way, I was in my second year of high school. The whole class was…
The European Parliament of Persons with Disabilities (EPPD) was a one-day event on May 23, 2023 that reunited over 600 disability advocates, policymakers and other stakeholders. It was hosted at the hemicycle of the European Parliament in Brussels. The theme of the 5th edition was “Building an inclusive future for persons with disabilities in the…
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…
