12 minutes
Presence is not belonging A disabled person in the room proves nothing. Participation, agency, influence and the wish to come back are what inclusion looks like.
What you’ll be able to do Explain the difference between presence and belonging using four observable signs, and apply them to a meeting, service or team. Compare the responses to this question and explain your choice: What is the honest assessment? Document a next step for Presence is not belonging: Choose one recurring meeting and score it honestly on the four signs for the disabled people in it. Pick the weakest sign and change one thing before the next meeting. Four signs you can actually see Organizations often report inclusion by counting: a disabled person attended, a self-advocate was on the panel, the ramp was installed. Counting proves presence. Belonging is different, and it shows in four observable things.
Participation: the person could take part fully, with the materials, pace, format and support that worked for them. Agency: the person made their own choices and spoke for themselves, not through a relative, a support worker or a well-meaning colleague. Influence: what the person said changed something, and they could see that it did. Return: the person would choose to come back, because the experience was worth their time and did not cost them dignity.
When any one of these is missing, presence is doing the work of hiding exclusion. The self-advocate in the room who could not read the slides, could not get a word in and never heard what happened to their comment was not included. They were displayed.
Two principles the disability community will expect you to know Nothing about us without us Decisions about disabled people are made with disabled people in the room and at the table, from the beginning, with the authority to change the outcome. In practice: involve people early, pay them for expertise, and show what changed because of their input.
Dignity of risk Disabled adults have the same right as anyone to make choices with risk in them: to live alone, to take a job that might not work out, to decline a service. Protecting people from every risk removes them from ordinary life. The Minnesota Olmstead Plan's direction toward integrated, self-determined lives rests on this principle.
Self-determination in DHS practice Person-centered planning, supported decision-making and informed choice are not paperwork categories. They are the working form of agency: the person's goals lead, information is given in a form they can use, and the decision is theirs.
Report belonging, not attendance What you can change You control whether your summary of a meeting or event says who attended, or whether they could participate, decide, influence and would return.
What to watch for Do not write “lived experience was represented.” Say what the person could do, what changed because of them, and whether they want to come back.
Your next step In your next meeting summary, replace the attendance sentence with the four signs.
The four signs Participation
Could the person take part fully: materials in a usable format, in advance; a pace that allowed processing; a way to contribute that worked for them?
Agency
Did the person speak and decide for themselves, rather than through a relative, support worker or colleague?
Influence
Did what the person said change anything, and could they see that it did?
Return
Would the person choose to come back? If the honest answer is no, the meeting was not inclusive, whatever the attendance list says.
They kept thanking me for coming. I did not want thanks. I wanted the agenda two days early in a format I could read, and to hear later what they did with what I said.
Composite self-advocate perspective, illustrative Carry this forward Belonging shows in four things you can observe: the person could participate fully, made their own choices, influenced the outcome, and would come back.
“Nothing about us without us” is a practical rule, not a slogan: decisions about access are better, cheaper and more durable when disabled people shape them, and paid for their expertise.
Dignity of risk means disabled adults get to make choices others might not make, including choices with risk in them. Protecting people out of participation is exclusion.
A scenario decision about a community advisory meeting, and a knowledge check on the four signs of belonging.
Choose one recurring meeting and score it honestly on the four signs for the disabled people in it. Pick the weakest sign and change one thing before the next meeting.
Browse and download only. Course notes are not typed or saved on this page.
Reset this lesson
Previous lesson Next lesson Carry this into practice Who is already in the room, what a barrier actually is, and why being present is not the same as belonging.
Return to the experience: What did you notice or try, whose perspective informed it, and what would you keep or adjust?
Participation and course completion in this program do not count toward DHS-required training credits unless management, a director, or DHS leadership expressly approves an exception.
