Beyond the label: describing how someone works rather than a diagnosis
Putting a name to how someone works doesn't carry the same weight in every context. For everyday life, what matters isn't the label, it's what the person experiences, and what helps them.
- The label opens doors but does not say everything
- The diagnosis, a word in another language
- The description, in the shared language
- Describing what is seen, what is heard, what helps
- Words held by the person themselves
- And for children
- The diagnosis in official procedures
- Diagnosis
- Description
- When the diagnosis is not made
- Writing as a tool for reclaiming
- The effect on the conversation
- Evolving with the person
- When the diagnosis evolves
- When the diagnosis is never made
- The language of how someone works
- The language of how someone works, an asset for conversation
The label opens doors but does not say everything
For administrative procedures, the diagnosis label is useful, sometimes indispensable. For the everyday relationship, it can on the contrary lock the person into a box, and close the conversation instead of opening it.
The profile shared on myHandiQR does not ask for a diagnosis. It asks the person to describe what they live through, in their own words.
This editorial choice is not trivial. It lets people without a formal diagnosis, or in the process of assessment, or simply with an atypical way of functioning, use the tool without having to go through the medical box.
The diagnosis, a word in another language
A medical diagnosis answers a grid of standardised criteria.
This grid is useful for the medical and administrative frame, but it is not designed to help a teacher, a colleague or a friend to work better with the person day to day.
The description, in the shared language
Describing a way of functioning with ordinary words lets any reader step in usefully.
The teacher does not need to know the DSM-5. They need to know how to talk to the child.
Describing what is seen, what is heard, what helps
A few examples of what a profile can convey:
- "I may seem absent in a meeting. That is how I listen, not a sign of disinterest."
- "When the noise rises, I need a few minutes in a quiet spot. It is not a withdrawal from the group."
- "I need instructions to be written down, even briefly. Out loud, I miss part of them."
- "I prefer to be told before someone takes my photo, even informally."
These wordings speak to any reader, without presupposing technical knowledge.
Words held by the person themselves
The person writing their own profile changes the nature of the conversation. It is not a file written by a professional about them. It is a stated word, chosen, editable at any time.
This difference is central to the tool's philosophy. The person is not the object of the document, they are its author. This shift, seemingly trivial, changes everything in the relationship with readers.
Where a medical file casts the person as a patient, the shared profile casts them as a counterpart who prepares their own encounter.
And for children
When the creator is a parent, the tone stays that of a parent talking about their child.
Over time, the child can be involved in the writing, then take it over when they are ready.
The diagnosis in official procedures
The medical diagnosis has a precise and useful role: it opens up rights, triggers support arrangements, justifies accommodations with institutions that need it in order to act. Without a diagnosis, many rights remain out of reach.
For an RQTH (recognition of disabled-worker status) application, an MDPH (departmental disability office) file, a PPS (personalized schooling plan), an exam accommodation, the diagnosis is the key. Removing or minimizing it in these contexts would be a mistake, and the shared profile is not meant to do that.
The point, then, is not to replace the diagnosis, but to recognize that it is not enough for everyday communication. Where the diagnosis opens administrative doors, the functional description opens human doors. The two registers do not oppose each other, they address different audiences.
Diagnosis
The diagnosis is precise, structured, standardized. It fits into an international framework, shared by health professionals.
It is useful for them, and for the institutions that rely on their assessments.
Description
The description is concrete, contextualized, alive. It evolves with the person, varies from day to day, speaks to daily life.
It is useful for those who cross paths with the person without having to perform a medical act.
When the diagnosis is not made
Not everyone facing difficulties has a diagnosis in hand. Some are in the process of assessment, sometimes for years. Others have decided not to enter a medical process, either by personal choice or because of limited access to professionals.
Yet these people live through the same concrete situations, the same misunderstandings, the same needs for adaptation. If the shared profile required a diagnosis to exist, it would exclude a whole part of the public it claims to serve.
On myHandiQR, the profile creator is never asked to provide a diagnosis. They describe what they live through, what helps, what complicates things, without having to place themselves within a medical classification. This absence of prerequisites is deliberate.
Writing as a tool for reclaiming
For many people, writing their own profile is a founding moment.
It is moving from the status of object (who is spoken about) to that of subject (who speaks).
The effect on the conversation
When the other person reads a description rather than a diagnosis, their reaction is different.
They ask fewer medical questions, more questions about daily life. The conversation becomes more useful.
Evolving with the person
A description evolves more naturally than a diagnosis.
A change of season, a period of stability, a new strategy that works: all of these are reflected immediately in the profile.
When the diagnosis evolves
A medical diagnosis can be revised. Long-term follow-up sometimes leads to refining, broadening, or rephrasing what had been established.
The profile, independent of the diagnosis, does not have to be rewritten. It continues to describe what is experienced, regardless of the label that professionals give it.
When the diagnosis is never made
For some situations, no diagnosis will ever be established. The grid of classifications has no matching box, or the person declines to enter into a medical process.
The profile works all the same, because it describes lived experience, not a category.
The language of how someone works
Describing how someone functions rather than a diagnosis calls for a shift in language. You move from "I have ADHD" to "I need to write down instructions so I don't forget them". You move from "I am dyslexic" to "I prefer to read at my own pace rather than aloud in public".
This shift in language is not trivial. It moves attention from the subject (who is this person medically) to the object (what concretely helps). This shift benefits the conversation, which becomes more actionable and less labeled.
For the person, this language is also a form of reclaiming. They no longer define themselves by their condition, they define themselves by their needs and preferences. This shift, seemingly subtle, changes the experience of writing, of sharing, and of being read.
The language of how someone works, an asset for conversation
Descriptive language has a particular strength: it invites a response. When an interlocutor reads "I need instructions to be written down, even briefly", they know what to do. When they read a technical term, they may be tempted to ask questions about the diagnosis, which diverts the conversation from its practical purpose.
This effect is especially clear in professional contexts. A manager who receives a functional description can immediately translate the elements into concrete adjustments. A manager who receives a diagnosis may, on the contrary, feel at a loss, not knowing whether they are allowed to ask questions, nor what to do with the information.
For people who carry a profile, this practical difference is the most convincing argument. The descriptive profile is read, understood, and acted upon. The medicalized profile, even if it is more complete, can remain a dead letter because it gives the reader no concrete handle.
This priority given to the practical over the descriptive is one of the foundations of myHandiQR's editorial choice. It reflects a simple conviction: what helps is not what best describes the person medically, it is what makes the relationship more fluid day to day.
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.