Raul looking tiredMEDICAL

OI & Disability Burn-Out

“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…


Activist with OI: Giorgia Meneghesso

Who are you and what is your relationship to OI? My name is Giorgia Meneghesso, I have type IV OI, with a little bit of overlapping genes with Ehlers Danlos. I am the regional representative of the Italian OI-association (As.it.OI) in Lombardia, and the third OIFE delegate for the Italian OI-organization As.it.OI. What do you…

People demonstratingEDUCATIONAL

What is ableism and why does it matter to you?

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…

[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.]STORIES

10 tips to parents of children with OI

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…


How does OI impact our lives?

A retrospective study of medical and insurance records from the USA indicates that health care costs for people with a rare condition have been underestimated and are three to five times greater than the costs for people without a rare condition. Why are we not surprised? Finding out more about direct and indirect costs related…

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