Helena Lambsdorff asks what the word means. And gives some answers.
🧐 What is self-advocacy?
The term comes from the late 1960s and was first used by a group of people with intellectual disabilities that met to discuss and stand up for their right to equal participation in society.
Self-advocacy is part of the disability rights movement and the reason it is so important was summarised by self-advocates from Lebanon, Nepal, Germany, and Belgium in the event ‘How self-advocates successfully influence policies’ at the Global Disability Summit 2025 this past April.
As Soufiane El Amrani said:
“Self-advocacy means people with intellectual disabilities have a say about things that have an impact on their lives. It also means they can contribute their expertise and expectations.”
That session was the only one at the GDS that was led entirely by people with intellectual disabilities. This means it was also the only one where easy-to-understand language was used by everyone on the panel and at all times.
🧐 What was the result?
In the Q&A session following the presentations of the panel many people from the audience took the stage. Some of them asked the self-advocates a question, but for nearly all of them it was clear that they saw this moment as their opportunity to talk about what really mattered to them and make their voice heard.
Almost all of them started by calling themselves self-advocates, even if it would be fair to assume they aren’t part of the self-advocacy movement.
🧐 Why is this important?
It matters because it shows that people – even within the disability movement – are not aware where the term self-advocate comes from.
This can be a problem, because it further marginalises people with intellectual disabilities.
The variety of issues that where brought up and the intensity with which they were brought forward showed that some had not felt they had an opportunity to make themselves heard up until this point. There were many sessions on many different topics, but this one seemed to be the only one where people felt comfortable enough to say how they really felt.
🧐 What can we learn from this?
- 💫 Everyone benefits from easy-to-understand language.
- 💫 Self-advocates speak openly, honestly and very clearly about what matters to them. When they lead, others feel encouraged to speak honestly as well.
- 💫 Everyone wants to be seen, heard, and given the space to speak openly. Panels and discussions that include people with intellectual disabilities create space for this.
There is real value in people speaking openly.
There is value in people feeling safe enough to share what matters to them.
But we can support this without taking over a term that has a specific and important meaning.
Read more from Helena Lambsdorff.