26.277 - Protection Can Take Away a Choice
“The status quo loves to say ‘no.’”
— Judy Heumann, Being Heumann (2020), as quoted by Berkeley News (2022)
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At five, Judy Heumann was refused admission to school because officials considered her a fire hazard.
The decision excluded a child who used a wheelchair from the education other children could attend. Heumann became a leading disability-rights organizer, challenging barriers to education, employment, and public life. Her observation about the status quo concerns the resistance encountered by people seeking inclusion. It asks us to examine arrangements that remain unquestioned while the people excluded by them are expected to adapt.
Her work belongs to the history of civil rights, where access involves institutional obligations and collective action. In the smaller setting of a family outing, we encounter a related question without equating the two situations: when participation presents a difficulty, which parts of the plan are we willing to reconsider? An existing arrangement can feel reasonable to those it already serves, even when someone else has never had a say in it. Biography · Quotation source
The Decision Made Before the Invitation
Imagine two versions of a Sunday outing.
In the first, a family takes a coastal walk and has lunch afterward. One member of the family, an adult who uses a mobility aid, stays home. The organizer has looked at the route: uneven ground, a section of steps, few places to sit. They cannot safely provide the assistance that part of the walk would require. They arrange to visit afterward instead. By Saturday evening, the worry has been resolved and everyone knows the plan.
In the second version, the same family is going out, the same steps are there, and the organizer has exactly the same limits. But the itinerary is unfinished. Someone has called the person who might otherwise be left out and explained what they know about the route. The conversation is still open because the family has not yet established which part of the day matters to that person, what help they would need, or whether another arrangement is possible.
The first version is easier to organize. It may even produce the outcome the person would have chosen. Perhaps they dislike coastal walks, prefer a quiet morning, and would welcome a visit at home. But nobody has learned that. Their absence has been decided through an assessment of difficulty, without their account of what would make the day worthwhile.
The organizer would probably be surprised to hear the decision described this way. They have been thinking about this person's needs throughout. They noticed the steps. They remembered the distance from the car park. They anticipated the moment when everyone else would continue along the path and someone would be left struggling. Offering a visit afterward felt like a thoughtful solution, one that spared the person both physical difficulty and the awkwardness of having to decline.
There is care in that reasoning. There is also a missing voice.
The person might say, “I wasn't expecting to do the walk. I wanted to see everyone at lunch.” Or they might know a shorter, level route nearby. They might need information the organizer has not thought to gather. These are possibilities, not answers we can supply on their behalf. What matters is that the plan was settled before any of them could be considered.
If they object, the organizer may feel caught off guard: “I was trying to keep you from getting hurt.” Now the conversation risks becoming a dispute about whether caution was justified. But the steps really are a problem. The organizer's inability to help with them is also real. Neither fact explains, by itself, why lunch disappeared along with the walk.
How far did the protective decision travel? Did it rule out one unsuitable stretch of path, or did it quietly rule someone out of the day?
Why Safety Can Seem to Settle Everything
The person making arrangements occupies an uncomfortable position. They can imagine the accident in detail: a loss of balance, a difficult transfer, a moment when the help available is insufficient. They may also imagine being asked afterward why they allowed the situation to arise. Anticipating trouble is part of taking responsibility. We depend on people who notice the conditions others have overlooked.
Yet notice how differently the two possible losses appear in this example. A fall would be an identifiable event. Missing lunch leaves no comparable scene. There is simply an empty chair, perhaps not even set out because the person was never expected. The organizer can point to the danger avoided. The opportunity removed is harder to describe, especially if they do not know what the person wanted from it.
This is an imbalance worth examining in our own reasoning. If our account of care includes only what could go wrong through participation, leaving someone out may appear to have no cost at all. We can finish the plan feeling that we have protected everything that matters, having never asked what else mattered.
For the person staying home, the cost may be quite specific. They might have wanted an unhurried conversation with a relative they rarely see, or to hear the stories as they unfolded around the table. A visit afterward might be welcome and still offer a different experience. Being told what happened later does not give them a part in what happened together.
We should be equally careful about assuming that inclusion always means attending. A person can value the relationship and find this particular arrangement exhausting, uncomfortable, or unappealing. Making room for their judgment includes making room for an answer that disappoints the organizer. The purpose of involving them is to learn what they want, including what they would rather decline.
The difficulty deepens when several kinds of responsibility become bundled together. The organizer knows the route and is offering transport. They may be the person who usually lends a hand. Those roles give them knowledge and responsibilities that deserve weight. But needing their assistance does not transfer every decision about the outing to them. A mobility aid tells us nothing, by itself, about someone's ability to assess information, express a preference, or contribute to a plan.
At the same time, the affected person's wishes do not settle what everyone else must provide. An organizer may have an injury, limited time, or another family member to assist. They may lack the skill or equipment for a particular task. Asking them to proceed anyway can move the risk onto their body and make their refusal seem like a failure of love. That would replace one form of disregard with another.
“I cannot provide that assistance” must remain an honest answer. The important question is what follows it. Sometimes it closes a particular option. Sometimes, after alternatives have been examined, it closes the outing altogether. But it should not acquire a wider meaning merely because the person stating it feels responsible for the result. We still need to understand which possibilities depend on that assistance and which do not.
There is another difficulty concealed in a finished itinerary: the route itself can begin to seem inevitable. Once the walk is chosen and the restaurant booked, the only remaining question appears to be whether the person can fit the plan. The decisions that created the difficulty have dropped out of view. Could the walk have been different? Could the group have met for lunch first? Did everyone need to do the same activity?
These questions do not mean every gathering must accommodate every preference or that plans can always be rebuilt. They show where judgment entered the process. A landscape has physical constraints; an itinerary also contains human choices. If we confuse the two, a decision we made can start to look like a fact nobody could change.
The same issue matters when we arrange a neighborhood event or a community gathering. A welcoming invitation has practical conditions attached to it: the entrance people must use, the distance they must travel, the time they must remain standing. Asking who can attend after those conditions are fixed leaves less room for participation than asking who should be involved while the arrangements are still being made.
For this family, the immediate work is smaller. They need to bring the actual difficulty, the organizer's limits, and the other person's priorities into the same conversation. No one of those can stand in for the other two.
Find the Constraint, Then Reopen the Decision
Return to the unfinished itinerary. The organizer has not become less concerned about safety. They have become more precise about what their concern establishes.
“That walk won't work with the help I can offer” is a useful starting point. It identifies a limit without presuming to describe every possible version of the day. The next question can concern what the person hoped to do: “What would you most like to take part in?”
That question needs to come early enough to affect the answer. If the organizer has already chosen two alternatives, they may simply be inviting the person to select the less disappointing one. A lunch invitation and a later home visit might both miss the wish to spend time outside with a particular relative. Learning the priority first allows the family to consider arrangements that actually serve it.
Suppose the person says lunch is what matters. The problem has become more manageable, but it has not vanished. Someone still needs to establish whether the restaurant and its facilities are accessible, whether transport is available, and whether the timing works. “You could just join us afterward” offers little if the person has no way to get there. An alternative becomes meaningful through the details that make it usable.
Nor should the person have to resolve every detail alone as the price of being included. They may know their own needs best and still need others to check the venue or adjust a booking. Sharing that work is part of planning together. The organizer can say what they can find out; the person can identify what information matters; another relative may be able to help. Any additional help has to be offered and agreed, rather than assigned through the assumption that someone will manage.
Now consider the harder answer: the person wants the original walk. They have heard the concerns and still want to go. Asking their preference has not produced agreement. This is where an appeal to choice can become too easy. Their willingness to accept a difficulty does not make the organizer capable of providing assistance they cannot safely give.
The conversation needs to stay with that specific dependency. What help would the route require? Is the person expecting something the organizer cannot offer? Is another arrangement genuinely available? If the outing depends on unavailable assistance, saying so is an essential part of giving the person accurate information. A promise made to avoid disappointing them would leave both people facing a problem they had already recognized.
If the person can make an independent arrangement without relying on the help being declined, the question changes. The organizer can still explain their concern, but a limit on their own assistance does not, by itself, give them authority to veto another adult's plans. Concern deserves a hearing; it also needs an accurate account of whose decision is being made.
There may be no satisfactory version of this Sunday. The accessible venue may be booked. Transport may not be available. A different route may defeat the purpose of this particular trip for other participants. The family may need to acknowledge that the person will miss something they wanted. A considerate process cannot guarantee a painless result.
Even then, the explanation matters. “We haven't found a workable arrangement for this trip” leaves the difficulty where it belongs, in a particular set of circumstances. It also leaves something to reconsider next time. If the explanation becomes “These outings are too much for you,” one unresolved plan can harden into a standing judgment about the person's life.
Repeated planning deserves attention for this reason. If each new invitation begins from the previous exclusion, there may never be a moment when anyone decides, openly, that this person no longer belongs at these gatherings. The assumption simply carries forward. Revisiting it does not require pretending that circumstances have improved. It requires checking whether the old conclusion still describes the present situation and whether different choices could produce a different opportunity.
The person may also decide that an available arrangement is not worth the effort. They might dislike arriving after everyone else or depending on a complicated sequence of lifts. Their refusal does not make the planning wasted. It tells the family something that an imposed absence could not: this was the person's judgment about the options as they actually stood.
The ordinary adult relationship in this example is the scope of the inquiry. It is not a model for emergency decisions or a substitute for the responsibilities of formal care. Here, the challenge is already substantial: each person must be able to speak honestly about what they want, what they know, and what they can undertake.
For the organizer who has already decided, reopening the conversation may require a small admission: “I ruled out the whole day when I knew only that the walk would be difficult.” They do not need to promise a solution before making that admission. They need to be willing to let the other person's answer change the work still to be done.
The route map remains on the table. The steps are still there. So are the organizer's limits. But the visit afterward is no longer being presented as a settled substitute for a day the person was never invited to consider.
“The stepped section won't work with the support we have,” the organizer says. “Before we decide what to do, which part of the day were you hoping to share with us?”
The itinerary waits for the answer.
☂️🛤️🧭
Practice: Choice Within Limits
Estimated time: 10 minutes.
Choose an ordinary, low-stakes situation in which you have considered limiting someone's participation out of concern for them. You can use an imagined example if that feels more useful. This reflection invites you to distinguish the actual difficulty from your assumptions, identify the help you can honestly offer, and notice what you still need to learn from the person affected.
The intended outcome is a clearer account of the constraint and one question that leaves room for the person's priorities. You do not need to resolve the situation or initiate a conversation. The exercise is a reflective aid, not a risk assessment or a tested intervention.
Scientific Summary
Demic and colleagues interviewed eleven relatives of adults with intellectual disabilities living in Norwegian municipal housing. Their qualitative study explored how relatives supported decisions and experienced tensions around preferences, opportunities, and possible adverse consequences. The analysis considers how care interacts with the way choices are arranged. Demic et al., 2025
These were relatives' accounts; the adults whose decisions were discussed were not interviewed. The study therefore cannot establish those adults' own experiences, and it did not test whether a particular approach improved safety. Its population also differs from the illustrative adult in this essay, whose mobility needs imply no difficulty making decisions.
The research provides context for a tension, not proof of the essay's proposed response. The argument developed here is ethical and practical: identify the specific constraint, be honest about available assistance, and include the affected person's priorities before deciding which opportunities must be closed. The ten-minute practice has not been evaluated by this study.
References
Demic, S., van den Breemer, R., Hanisch, H., & Lid, I. M. (2025). Care and choice architecture: Relatives’ support for adults with intellectual disabilities in supported decision-making processes. Journal of Intellectual Disabilities, 29(3), 651–666. https://doi.org/10.1177/17446295241297184
Judy Heumann. (n.d.). Judy Heumann (1947–2023). https://judithheumann.com/project/about/
Strategic Communications. (2022, November 4). Berkeley Talks: Judith Heumann on the long fight for inclusion. Berkeley News. https://news.berkeley.edu/2022/11/04/berkeley-talks-judith-heumann/
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