“Nothing About Us Without Us.”

It is a lovely phrase. It has rhythm, rhyme and force. It has become a defining principle of disability activism: decisions affecting disabled people must include disabled people.

But the more I say it, the more I notice its first word:

Nothing.

The phrase can be described as a double negative. Technically, the two negatives do not cancel each other out or make the sentence incorrect. But it is certainly constructed from two negative ideas: nothing and without.

To understand it, the listener has to make a small mental conversion:

• Nothing about us should happen without us, which means
• Everything about us should happen with us.

Of course, most people understand the slogan. Brain science does not show that human beings are incapable of comprehending negative phrases. That would itself be an overstatement.

Research, however, suggests that negative statements often require more cognitive effort than affirmative ones. Negation can take longer to integrate into the meaning of a sentence, and people may initially activate the idea being negated before mentally reversing it. Clear and relevant context can make negative language easier to process.¹ ² ³

This is why telling someone, “Don’t think of a pink elephant,” tends to produce a rather vivid pink elephant.

The issue is not that the brain ignores the word “don’t”. It is that the positive image is usually easier to picture than its absence.

That makes me wonder about “Nothing About Us Without Us”.

Its political meaning is powerful, but its language begins with absence. It tells people what must not happen before describing what should happen. The emotional emphasis can land on exclusion, rather than participation; on nothing, rather than everything; on being left out, rather than being present and leading.

Perhaps that was exactly what the disability movement needed the phrase to do. It named exclusion and resisted decisions being made for us, around us and over us.

But language can evolve.

We could move from a protest against exclusion to a promise of participation.

The most direct positive translation is:

Everything About Us With Us

It retains some of the rhythm of the original while making presence—not absence—the starting point.

It says that our participation is not an optional consultation at the end of a process. We should be involved from the first conversation, through the decisions, design and delivery, to the evaluation of what happens next.

There are other possibilities:

• Every decision about us includes us.
• With us from the start.
• Our lives. Our voices. Our decisions.
• Co-design. Co-decide. Co-lead.
• We lead the decisions that shape our lives.
• All about us, always with us.
• Our experience. Our expertise. Our leadership.
• Decisions with us. Power shared.
• We belong in every conversation about us.

Each places disabled people inside the action rather than outside it, knocking on the door.

This does not mean abandoning “Nothing About Us Without Us”. Its history and power deserve respect. It continues to expose exclusion clearly and memorably.

But perhaps it needs a companion phrase—one that clearly and memorably exposes that which describes not only what we refuse, but what we expect.

Nothing About Us Without Us named the injustice.

Everything About Us With Us names the future.

References

Dudschig, C., Kaup, B., Liu, M. and Schwab, J. (2021). “The Processing of Negation and Polarity: An Overview.” Journal of Psycholinguistic Research, 50, 1199–1213. DOI: 10.1007/s10936-021-09817-9.

Farshchi, S., Andersson, A., van de Weijer, J. and Paradis, C. (2023). “Brain responses to negated and affirmative meanings in the auditory modality.” Frontiers in Human Neuroscience, 17, 1079493. DOI: 10.3389/fnhum.2023.1079493.

Wirth, R., Kunde, W. and Pfister, R. (2019). “How Not to Fall for the White Bear: Combined Frequency and Recency Manipulations Diminish Negation Effects on Overt Behavior.” Journal of Cognition, 2(1), 11. DOI: 10.5334/joc.62.

The UN describes the original motto as a longstanding principle of participation used by disabled people’s organisations. (United Nations) The research supports describing negation as frequently more cognitively demanding, not as something the brain simply cannot comprehend. (link.springer.com)