Self-definition versus labelling: why the person keeps control of their own story
Describing how someone works is not putting a label on them. Why this distinction changes how long support takes and the quality of every encounter.
A subtle but structuring nuance
Self-definition means that a person with a disability chooses for themselves the words, the moment and the audience for what they say about themselves. Labelling, by contrast, is when a third party (school, employer, doctor, parent) imposes those words in their place. The difference seems subtle but it changes the quality of the encounter, the trust and the duration of the support. Here is why.
The difference in one scene
Imagine two versions of the same meeting between a teacher and a parent:
- labelling version: "your son is dyspraxic, you need to adapt"
- self-definition version: "here is how my son functions, here is what helps, here is what gets stuck"
The first freezes a category, the second describes a way of functioning. The first commits you to repeating with each new person. The second lets itself be updated over time.
Why this nuance changes everything
Three concrete consequences of the nuance:
- the mental load of passing things on no longer weighs on the person in a defensive stance, but in an active one
- the time frame is reversed: what is said today does not commit you in 5 years' time
- the relationship is no longer mediated by the condition: you are talking to a person, not to a label
How labels harden despite ourselves
No one deliberately decides to label. The slide happens through administrative shortcuts, through fatigue, through habit:
- the vocabulary of the files (PPS, MDPH, RQTH) imposes categories that quickly spill over into everyday language
- meetings that are too short force functioning to be summed up in two words
- the successive professionals pick up their predecessors' wording without questioning it
- the circle around the person ends up adopting the technical vocabulary, believing it is the right thing to do
The person can then become the object of a story they did not write. It is this imbalance that self-definition seeks to restore.
What self-definition makes possible day to day
When the person keeps control of the narrative, several things are restored:
- they can calibrate what they share according to the person opposite, without revealing everything at every encounter
- they update their story as things evolve, without carrying a childhood label until they are 40
- they point out the helps that work for them rather than enduring those decided in a meeting
- the relationship with professionals becomes an exchange, not a one-way consultation
To support this stance day to day, some adults with a disability and some parents prepare a myHandiQR profile whose three texts (introduction, how to help, what to avoid) are written in the first person, editable at any time, shared at the person's request.
A professional stance for support workers
On the professionals' side (teachers, AESH (classroom support assistants), carers, HR), a few gestures support self-definition without taking it away:
- ask the person how they prefer to be talked about, before reading a file
- distinguish in the notes what comes from the diagnosis and what comes from the functioning described by the person
- reread with them what will be passed on elsewhere, and accept their corrections
- do not repeat an inherited wording without checking it against the reality of the day
Key takeaways
- Self-definition vs labelling: describing a way of functioning rather than affixing a category changes the duration and quality of the encounter.
- The label weighs over the long term, functioning updates itself at each visit. Prefer what can move.
- Administrative files impose categories: it is up to the person to complete them with their own description.
- On the professional side, first ask the person how they prefer to present themselves before reading their file.
- The story belongs to the person: they calibrate it, update it, share it on request.
No need to explain it to every new person.
Three texts (introduction, how to help, what to avoid), one shared QR code. When scanned, your contact reads what they need to know, in their own language. You take back control of the story without carrying its weight at every encounter.
