Guillaume Benhamou, self-determination through training

First post in our series "Inclusive governance: what's the point?Example of user inclusion in the healthcare sector", produced following the eponymous conference organized by YourVoice, on the occasion of the Convergences World Forum.

Guillaume Benhamou is an activist in the fields of education, international solidarity and local citizenship. Born with a severe motor handicap, Guillaume Benhamou took a course in therapeutic patient education in 2020.

"When we have a disability, or a chronic illness, what matters is how we can bring that illness into the service of others."

"I trained at the Université des Patients, alongside Professor Catherine Tourette-Turgis. I really appreciated this training because it brings together healthcare professionals and patients with different disabilities and pathologies. Training with peers who don't have the same pathology is enriching, it avoids self-centeredness and navel-gazing, and has enabled me to take a step back from my illness, so that I can grasp the fundamental issues linked to disability and patient care. We each have a different story to tell about our illness, and a different story to tell about our lives in the service of disability. As an activist and a disabled person, there are times when pain forces me to be a little more patient. These, too, are moments of learning about illness and disability, and of adapting."

Living with cerebral palsy since birth, Guillaume Benhamou spent many years working in the medical-social sector before moving into his own home. With his association "GB Conseils et Formations", Guillaume Benhamou wears the double hat of consultant and teacher, and regularly speaks on issues of general medicine, patient expertise, autonomy, ethics and self-determination.

"The first step towards autonomy and inclusion is trust. Trust from one to the other and from the other to the one, it's a game of trust."

"Thanks to the HPST law (hospital, patient, health, territory) and the 2005 law on equal rights and opportunities for disabled people, we've moved towards a real willingness to consider the action of patients or the action of users. I don't like the word "user", I prefer the word "inhabitant", because people who live in facilities are often not users.My first step towards taking part in the life of the city was to buy my own home, which doesn't make me autonomous because I'm still extremely dependent. Nonetheless, I live in self-determination of my choices, of my freedom, and I've decided to put this freedom and these choices at the service of others, who don't have the choice of this autonomy.

Today, I'm lucky enough to have joined the board of directors and executive committee of the Hovia association, not as a resident, as I've never benefited from its services, but as an administrator. This position allows me to take on responsibilities within the governance, taking the necessary step aside.I think there really is a paradigm shift. Associations are listening more and more to residents, and are appointing people with increasingly severe disabilities or people who are more and more dependent. This requires the associations to question themselves and offer training to support the disabled people who take on these functions, otherwise we're turning them into stooges."

Guillaume Benhamou has been involved with associations for twenty years. His dedication and desire for commitment have led him to evolve from a volunteer in the field to the governing body of an association. He was also a member of the Conseil national consultatif des personnes handicapées from 2020 to 2024. Today, Guillaume Benhamou defends the inclusion of people with disabilities through the transmission of tools and training. He is also sensitive to the inclusion of young people within these same governing bodies, to ensure the future and openness of the associative sector.

"To encourage young people to get involved, we need to sit them at the same table as their elders, give them the opportunity to contribute knowledge that differs from the academic knowledge of older people."

"It's important to remember that there are a lot of associations for 18-40 year olds, and that's how I got into the associative world myself. The hardest thing is not to mobilize young people, but to preserve this mobilization throughout their working lives by accompanying young people from youth associations to associations for the not-so-young."