To Be a Butterfly

A friend has been aching over the word ‘disability’. He has a degenerative medical condition that confers a variety of impediments to living a ‘normal’ life. He helpfully recited a dictionary definition of normal – “(of a person) physically and mentally healthy” – and “the usual, typical, or expected state or condition.”

His point was that we run these two definitions together – and have built our world around it. His medical condition dictates his normal. Then he makes an interesting point. He is not ‘disabled’ in his normal state. It is a pertinent point. The ‘normal’ human condition does not include an ability to fly, but humans are not, therefore, disabled.

This has led to a social idea of disability – that our human-made environment creates barriers. We can and should remove them to give equal access to our common domain.

While this is a powerful idea about inclusion and equity, my friend worries that the term ‘disability’ in this context is too limiting. He does not want to be defined in terms of disability.

This is a good point. It’s been the direction I have been meandering in. He’s just more adamant on the point.

A Word Beyond Is Use By Date?

Disability, as an idea, has been evolving, slowly. Recently I was watching a program on the Kennedy family in the US. The patriarch was determined that a son would rise to be President, but a daughter, born with an unspecified disability, was thought to be an impediment to that aspiration. She reflected poorly upon the family. This was in the 1950s. One blemished sibling could mark a whole family with the taint of abnormality.

We have come a long way in many respects, and not so far in others. Putting away people born with disability is no longer something we countenance. But a lack of public visibility still tells us that being in the shared domain is still not part of the normal for many people with disability.

Words acquire meanings which prevail for a time as useful tools to convey ideas. Then the meaning can change, and the usefulness of the word decline. I have been wrestling with why Disability Inclusion is taking so long in settings where there should be a compelling moral and legal imperative that would ideally make the change urgent. Language seems to matter a great deal. For me, ‘person with disability’ is better than ‘disabled person’. My friend asked: “Why not simply say person?” Good question.

We can say that a person (with disability) benefits from (Disability) Inclusion strategies. How would the meaning of that statement change if we lost the words in brackets? What would be diminished?

I want to suggest that far from losing something in the translation, we would gain far more. This is the logic of Inclusive or Universal Design – design for everyone.

Now here’s a paradox – of sorts. I have argued that disability is my lens that creates a fine focus on a wider concern for inclusion. It can detail a particular dimension of suffering through exclusion more effectively than a general assertion. This is usual. There is an abundance of such lens in our community. But many lack clarity and efficacy as simulants to change. 

We can’t surrender disability as a lens. But we have to be canny about how we apply it. Can we leave disability behind and still carry it with us?

Is Disability Working Well?

An empathy trigger should excite an immediate response when it is working well. I have been focusing on areas where staff with disability remain subject to unempathic and even cruel conduct despite shifts in organisational culture and values. What’s not working here speaks volumes.

These sticking points are corrosive because they are never secret for long. Once word gets out, and there is no effective and timely effort to sort out the concern, there is an unmistakable message sent about the organisation’s leadership culture. That message is that it has an appetite for abuse of vulnerable staff. It may not be a big appetite, but it becomes a strong headwind against which positive change agents must continually push. 

What is the Question?

For 3 years, starting in early 2002, I struggled to frame the research question for my Masters Honours thesis. I had the theme and the passion, but a coherent question eluded me. I tried forcing efforts to conform, but they broke down constantly. I contemplated quitting many times. It took serendipity to rescue me, and when the question finally came, it opened a floodgate. Since then, I have come to understand that often the greatest impediment to success comes from asking the wrong question.

What is the goal of Disability Inclusion? Is it to help people with disability to be included? Is it to help people become more inclusive, so people with disability don’t have a problem being included? They are not two forms of the same question, but two related, yet distinct, questions. For one, the lens is held up like a battle standard. For the other, the lens is carried in the back pocket, and used judiciously.

Both questions have value. Both require responses. But method and language are different for each.

I am not advocating for either approach, rather for clarity in which ever approach is elected. Both must be in play, I believe, because the Disability Inclusion cause must evolve from one to the other, in terms of which is dominant – for now, both are required.

The Butterfly Effect

In the late 1990s I was fascinated by Chaos and Complexity Theories. The idea of a butterfly flapping its wings in one part of the world causing a storm in another part of the world has become a witless cliché.

But, there’s a deep truth radiating beneath the glib and careless fog of casual reference to a thing not really understood. 

The anthropologist, Margaret Mead is claimed to have said “Never doubt that a small group of thoughtful committed individuals can change the world. In fact, it’s the only thing that ever has.” This may be the most famous quote never actually uttered by the person to whom it has been attributed.

It is famous because it is mostly true – a small group of thoughtful committed individuals can change the world. It happens all the time, daily, in fact – for good and ill. Such small groups do not function in isolation. The quote does not say “alone”.


The most potent butterflies flap their wings with clarity of intent. Butterflies with disability can generate change more effectively if they are motivated by deeper understanding of disability. My friend’s questioning of whether the word remains useful is, itself, useful.

He asks us to examine what has become normal, and reflect on whether this serves our needs, or whether we should progress to a more useful tool.

The cliched butterfly creates a storm, But why not also a blissful summer’s day? The cliched butterfly had no intent known. The mere mechanics of action and evolving reaction are what excite our imagination. Would clarity of purpose and intent change the consequence?

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