Invisible disability: 6 tools families already use every day

Introduction

Explaining an invisible disability to every new person is a heavy task. This ongoing work is called the explanation burden. Families and the people concerned have always invented solutions to avoid starting from zero at every encounter. This article takes stock of the 6 most used tools, how they combine depending on context, and where each one stops.

The 6 tools families use

Each of these tools was created to meet a specific need:

• The communication logbook at school, which follows the child from one year to the next. Used from preschool onward, it centralizes exchanges between parents and teachers.
• The handwritten note given to the teacher at the start of the school year. Simple, personal, suited to one adult and one specific moment.
• The MDPH card or CMI (French disability inclusion card) tucked into a wallet. Administrative recognition that opens up rights and priorities.
• The medical bracelet for emergencies. Signals a critical condition to a first responder.
• The sunflower lanyard (Hidden Disabilities Sunflower), introduced in the United Kingdom in 2016. Signals the presence of an invisible disability in airports, train stations, shops.
• Shared tracking apps (shared medical records, digital logbooks). Used mainly for medical and therapeutic follow-up.

How these tools combine

No single tool is designed to cover everything on its own. Families often combine 2 or 3 tools depending on the context:

• At school: daily communication logbook, handwritten note at the start of the school year, MDPH card for outside professionals (AESH, speech therapist).
• At work: RQTH status shared with HR, a conversation with the manager, a printed profile for direct colleagues.
• In public spaces: medical bracelet for life-threatening emergencies, sunflower lanyard for social situations (airport, counter).
• For a child supported by several people: communication logbook at school, app shared between caregivers, profile given to after-school staff.

The combination works, but it requires the person concerned to manage several tools in parallel and keep each one up to date individually.

Where each tool stops

Each solution is designed for a specific context. Beyond that context, it no longer follows:

• The communication logbook doesn't leave school. It doesn't follow into an after-school center, occasional childcare, or a medical appointment.
• The handwritten note to the teacher is valid for one adult, one year. The following school year, everything has to be redone.
• The MDPH card establishes an administrative right. It says nothing about how to help or what to avoid.
• The medical bracelet speaks to a first responder in a life-threatening situation. It doesn't speak to a colleague in the office.
• The sunflower lanyard signals that an invisible disability is present, without saying which one or how to respond to it.
• Shared tracking apps require every professional to create an account, learn the tool, and log in. Many never do.

The common gap: adapting to the audience

What all these tools have in common: they deliver the same information to anyone who consults them. Yet a first responder, a teacher, a colleague, and a child don't need the same level of detail about the same disability.

This adaptation to the audience is what makes the difference between being "informed" and being "understood." A teacher needs practical guidance, a first responder needs concrete actions, a child needs a simple explanation within their reach.

One complementary approach is to create a single profile and share it through a QR code, with an explanation that adjusts to the reader's role at the moment of scanning. That is the logic behind myHandiQR: the profile is written once by the person concerned, and the explanation of each disability adjusts to whoever reads it.

Key takeaways

• Six tools are already commonly used: communication logbook, handwritten note, MDPH card, medical bracelet, sunflower lanyard, tracking apps.
• Each tool is effective in a specific context, but none follows the person everywhere.
• Families often combine them (2 to 3 tools per context), at the cost of managing multiple tools.
• What their limitations have in common: none of them adapts the message to whoever reads it.

You or someone close to you?

Do you live with this burden day to day, support someone who does, or carry it at work?

• Parent of a child with a disability
• Adult with a disability
• Employee with a disability (RQTH)
• Family caregiver