Helena Lambsdorff shares her thoughts about the use of data in advocacy, following a visit to Romania in October 2025.
“Nice story, now show me the data!”, reads a sticker on a laptop, from across the room. That room is in the University of Timișoara, Romania, where Milan Šveřepa just spoke to over 100 students of social work, disability law and psychology. The main topic: deinstitutionalisation (DI) of people with intellectual disabilities.
I can’t ignore the message, though I am trying hard to concentrate on the exchange of DI-practices (progress, and challenges) taking place around me. In a university data is the foundation for the work that it produces. Students and professors must put it at the basis of anything they do. Here, the need for data does not discriminate.
Is something just a ‘nice story’ before it is ‘proven’ numbers?
Is this good or bad?, I ask myself. Is something really only a ‘nice story’ before it is ‘proven’ by charts and an accumulation of numbers?
Most (if not all) stories about the life in an institution are not ‘nice’. Talk to anyone who has ever lived in an institution, and let me know how ‘nice’ the stories were.
Coincidentally, I spoke to multiple people who had been forced to live in institutions yesterday and there is not a single ‘nice’ thing I could report back to you. Physical and sexual violence, being whipped with a wire in the basement as punishment, being forced to take medication, hunger, cold, forced labor,… Want me to continue?
I heard all this from only 3 people. Not enough to be used at university level, I’d assume. Academics would probably tell me that you cannot make a case for a whole country, never mind a whole continent, based on the story of only 3 people.
But why shouldn’t we do that?
We live in a world where data is valued and needed
Why does one person’s story of systemic violence not matter enough to us to change the whole system? Especially when we know! that institutions are based on segregation and the silencing of voices.
I also know that we live in a world where data is valued and needed to understand the scale of the challenges ahead of us. Widespread practices and experiences are often assumed to be exceptional – data can help us understand that this assumption is wrong. That really bad things happen not only to individuals but ‘groups’.
There needs to be a change. We need to understand that individuals often represent larger groups, especially marginalised ones like people with intellectual disabilities, especially those forced to live in institutions. And we also need those with the power, tools, and knowledge to create more relevant data, one that actually serves the people we write and speak about.
Romania and Europe data
Here is some data from Europe and Romania that you can ponder over and maybe even use for the greater good:
- 800 000 people with intellectual disabilities in institutions across Europe
- 16 000 people with (mostly) intellectual disabilities are forced to live in institutions in Romania
- 22 institutions with more than 50 people in Romania
- 372 institutions with 50 or slightly less
Read more from Helena Lambsdorff.