To borrow a phrase used by the disability rights movement, “Nothing About Us Without Us.” This is a story about inclusion in its truest sense: not simply being welcomed into the room, but having the authority to shape what happens within it.
I first encountered this story in Dubai, at the ICCA Congress in 2018, where the World Down Syndrome Congress was presented as one of that year’s Incredible Impacts finalists to a room full of people who plan the world’s congresses for a living.
Glasgow was what first brought Down Syndrome International onto my radar. But Glasgow alone is not why this story belongs here.
What has stayed with me is everything that followed. Down Syndrome International did not treat inclusion as the theme of one successful congress, or as a particularly moving moment on a stage. It continued to work with other organizations across the inclusion movement, developing campaigns, resources, and collaborations that consistently placed people with Down syndrome and intellectual disabilities at the center of the decisions affecting their lives.
The 2018 congress revealed a philosophy. The years since have shown that they live it.
That matters deeply to the idea of the Modern Academy. The original academies were places of knowledge, inquiry, and exchange, but they were also selective institutions. They determined who was permitted to enter, who was entitled to speak, and whose thinking counted as knowledge. A modern academy cannot simply recreate those structures with a more diverse audience. It must continually ask who is still outside the room, whose expertise remains unrecognized, and whether the people most affected by its conversations have any real authority within them.
Down Syndrome International offers one answer. Inclusion is not bringing people into a structure that others continue to control. It is allowing them to shape the structure, set the agenda, and speak with their own authority.
The Glasgow congress made that visible. What came afterwards made it credible.
The people at the center were the ones usually placed at the edge
The 13th World Down Syndrome Congress took place in Glasgow in July 2018, hosted by Down’s Syndrome Scotland on behalf of Down Syndrome International. More than a thousand people came, from around ninety countries, and of those delegates, one hundred and twenty were people with Down syndrome.
What made it different was who led it. The congress was figure-headed by a team of commissioners, adults with Down syndrome who served as its ambassadors and public face. They were not brought in to make the event feel inclusive. They were its standard-bearers. The congress also opened with more than seventy people with Down syndrome carrying their countries’ flags into the hall, and it included a dedicated day, The Gathering, in which delegates with Down syndrome met on their own terms to talk about self-advocacy, human rights, and what they wanted to say to the world. They chose the messages the congress would carry. They spoke from the stage, not as case studies introduced by someone else, but as people describing their own lives in their own words.
If you have spent years inside professional gatherings, you understand how rare this is. The ordinary structure of a congress about any group of people places the professionals at the center and the people themselves somewhere near the edge, valued, thanked, perhaps applauded, but positioned as the recipients of expertise rather than as holders of it. Glasgow inverted that. It treated the people with Down syndrome as the ones who knew the most about the one subject that mattered most, which was their own experience of being alive.
It sounds simple. It is anything but. It is the idea captured in a phrase the disability rights movement has used for decades: Nothing about us without us. It is not a request for a warmer welcome. It is a claim about authority. It says that a conversation about a group of people, held without those people helping to shape it, is not merely incomplete. It is missing essential knowledge.
Who gets to be the expert?
I want to sit with that word, expert, because this is where the story stops being about disability and becomes about something universal.
Every profession has a group of people it exists to serve, and every profession is tempted, without ever deciding to, to treat those people as the subject of its expertise rather than as participants in it. The doctor speaks about patients. The educator speaks about learners. The planner speaks about residents. The intention is good. The knowledge is real. But somewhere in the structure of the gathering, the people being discussed quietly lose their standing as people who know things, and become instead the thing that is known.
What the World Down Syndrome Congress understood is that this is a choice, not a law of nature, and that it can be reversed.
When a person with Down syndrome stands on a congress stage and describes what independence feels like, or what exclusion feels like, or what it is like to be spoken about in the third person while sitting in the room, they are not providing color for someone else’s research. They are the primary source. They hold knowledge that no clinician and no researcher can generate from the outside, because it can only be known from the inside. A congress that makes space for that knowledge is not being generous. It is being accurate. It is finally admitting the most qualified expert in the room.
The uncomfortable question this raises is one that every association, and every profession, could ask itself. Who have we been speaking about, all this time, without ever quite speaking with them?
The philosophy that outlived the congress
A single congress, however beautifully designed, could still be an exception. What tells you that an idea is real is whether it survives the closing ceremony, travels into other organizations, and continues to shape the work when no award jury is watching.
That is what makes this story different for me.
In the years following Glasgow, the principle did not remain the property of one congress or one organization. Down Syndrome International continued to collaborate across the wider inclusion movement, working with organizations that shared the conviction that people with intellectual disabilities should not merely be represented but should participate meaningfully in the decisions, campaigns, and structures that affect them.
The later initiatives are not simply evidence of good communications or effective advocacy. Together, they form a continuing body of practice. Again and again, the message is the same: do not speak for people when you can create the conditions for them to speak, decide, lead, and act for themselves.
This continuity appeared first in the structure of the congress itself. The commissioner program was not designed as a one-off for Glasgow. Down Syndrome International planned to carry it forward to the congresses that followed, in Dubai and Brisbane, so that the commissioners’ own experience and knowledge could be passed to each future host city. The people with Down syndrome who led one congress would help prepare the next. Leadership was not borrowed for a single event and then returned. It was built into the succession.
It also appeared in the work that followed. Down Syndrome International worked with Inclusion International to create a set of guidelines called “Listen, Include, Respect.” The purpose was to help organizations of every kind include people with intellectual disabilities in their actual work, not as a gesture but as a practice. The guidelines were not written on behalf of people with intellectual disabilities. They were written with them. More than fifteen hundred people with intellectual disabilities and their families, from almost a hundred countries, helped produce them, and self-advocates led the process over three years.
Read that sequence again, because it is the whole argument of this chapter in miniature. A principle about who gets to shape decisions was itself shaped by the people the principle is about. The method matched the message. The guidelines do not merely assert that people with intellectual disabilities should have a say in the decisions that affect them. They were built through exactly that, having a say, and so they stand as proof that it can be done.
That is what it looks like when a philosophy escapes the congress hall. It stops being a moving experience that delegates remember fondly and becomes a tool that any organization, anywhere, can pick up and use to change how it works.
Where the decisions are made
The same conviction has since traveled far beyond the congress and into public culture. Around World Down Syndrome Day, which Down Syndrome International was pivotal in securing recognition for by the United Nations, the wider movement now speaks this idea to millions of people at once.
A 2025 campaign, produced by the Italian association CoorDown and supported by Down Syndrome International among many others, opens with an ordinary scene. A young woman named Sofia sits in her bedroom while her parents decide, between themselves, which dress she should wear to a wedding. They mean only kindness. It does not occur to them to ask her. Then Sofia interrupts and asks to be part of a decision about her own body, her own appearance, her own life. From that small domestic moment, the campaign widens outward, to train stations and workplaces and classrooms and finally to parliaments, gathering into a single demand: to be present where the decisions are made.
It begins with a dress. It ends with the writing of laws. And the line that carries it is not a plea to be included. It is a claim to authority. The people in the film do not ask to be looked after better. They ask to be part of the decision.
That is the difference between inclusion and agency, and it is the difference this whole story turns on. Inclusion can still be something done to you, a door held open by someone who owns the building. Agency is holding the pen. The World Down Syndrome Congress, at its best, was not inclusive because it invited people into a room that had been designed without them. It was inclusive because it expected them to help design the room.
What followed
The room in Dubai was moved. I remember it. A presentation that could have been a list of outcomes became, for a few minutes, something quieter and more searching, as a hall full of congress professionals recognized that they had just been shown a different way to gather. Being moved, though, is cheap. It costs nothing, and it fades by the next coffee break. What matters is what a feeling turns into.
For me, it turned into a working relationship with Down Syndrome International that outlasted the applause. We collaborated on bringing more of this thinking to our own community, through sessions built around what Glasgow had demonstrated. And, in the detail that matters most to me, we included people with Down syndrome themselves as speakers, not as the subject of a session but as the people delivering it.
I mention this not because my part was large. It was not. I mention it because the entire argument of this story is that being moved is not enough, that inclusion is a practice rather than a sentiment, and it would be dishonest to make that argument without admitting that the story asked something of me too. It is easy to praise a congress for sharing authority. It is harder, and more to the point, to go home and share some of your own.
The ancient academy was, in part, an argument about who was allowed to think. Its walls admitted some and excluded many, and every generation since has had to answer the question those walls raised: whose voice counts as knowledge, and whose absence have we simply stopped noticing?
A modern academy must be far less discriminating about who is permitted to enter, participate, and lead. It must be accessible not only in its buildings and technologies, but in its language, its formats, its assumptions, and its distribution of authority. Openness cannot mean merely inviting more people into systems that remain designed around the comfort of those already inside.
For associations, this is not an abstract philosophical question. We create the rooms in which professions define their priorities, establish their evidence, recognize expertise, and imagine their futures. We therefore have a responsibility to notice who those rooms exclude, whose participation they make unnecessarily difficult, and who is continually spoken about without being given meaningful influence over the conversation.
Down Syndrome International’s work is awe-inspiring not because it perfected inclusion at a single congress, but because it continues to challenge the structures that make inclusion necessary in the first place.
A modern academy does not speak more kindly about people at its margins. It questions why it created margins at all.
It does not simply hand someone the microphone for a moment. It invites them to help decide what the gathering is for, how it will work, and what knowledge it will carry into the world.
The experts, it turns out, were in the room all along. The real question is whether the rest of us were prepared to listen.
All stories, memories, emotions, perspectives, and final decisions are mine. I sometimes use AI to help me organize my thoughts and polish my writing.