“Some stories enhance life; others degrade it. So we must be careful about the stories we tell, about the way we define ourselves and other people.” (Burton Blatt)

NPR is an American non-profit membership media organization that serves as a national syndicator to a network of hundreds of public radio stations. Three days ago, it decided to publish this image on it’s Facebook page. It gathered thousands of comments, so they contacted the photographer and wrote a follow-up piece about why they decided to publish the image.

We were told that the photographer, Andrew Nixon, shot this image in an effort to show how being caregivers affects the ageing parents.

SBS Insight then posted it to their page, again with many hundreds of comments.

That this is an image of a father who deeply loves his son, I agree.

That this image portrays a reality that remains largely invisible in our society, I agree.

That this image is likely well intentioned, I believe you.

But that, because of these things, it was OK for the photographer to have published this image, I disagree.

I want to try and explain why in the hope of opening up a different perspective. I say different, because the vast majority of online commenters have responded to this image positively.  The vast majority have agreed that this image was fine to publish because it shows love, it shows a reality, and because consent was provided by the parents.

It’s difficult to write about this without seeming to lay judgement on the father (or the family). It’s true I know nothing about either of these people. But neither do most of the people looking and commenting on this image. None of us do. And this is important because imagery like this is so powerful and sends messages about both the young man in this photo as well as people beyond the image.

And so this is the first reason I don’t think this image should have been published. It confirms, not disproves stereotypes.  That’s why I chose the image for this blog, because it links firmly to others arguing similarly – what does it do for the continent of Africa for continued portrayal of people begging, emaciated and desperate?

I believe that any benefit provided by opening up discussion around the issue of carers who are ageing is outweighed by this. In fact, by confirming stereotypes I think this image has served to promote the needs of one party at the expense of another.

Some of the stereotypes about people with disability I think this image re-inforces:

Honourable burden

Forever child-like

Non sexual

Incapable

Paulo Friere wrote in Pedagogy of the Oppressed,  “The oppressor shows solidarity with the oppressed only when he stops regarding the oppressed as an abstract category and sees them as persons who have been unjustly dealt with, deprived of their voice….when he stops making pious, sentimental and individualistic gestures and risks an act of love”.

One of the outcomes of confirming stereotypes is that we limit possibility for people.  People that we don’t even know!

And without knowing anything about this young man, I would argue that we are largely left with a sense of greatly diminished capacity.

But is this reality? When we see people in this way, the possibilities for them have already been limited.

Can this young man learn and grow? Can he communicate? Can he reciprocate? Can he have a positive future? The answer to all these questions, even without knowing him, is yes, because to be human is to have these capacities. Yet when we see images like this, perhaps we wonder that maybe the answer is ‘no’. Imagery like this doesn’t help us move past those in-built hesitations about people with disability. It doesn’t challenge us in a way that brings new understandings about people, that smashes the limits of our preconceptions. We think we are seeing something new. But unfortunately we are actually just seeing more of  the same.

People with disabilities too have something to say about the issues surrounding ageing carers. We need imagery and discussion that illuminates all perspectives on this issue and doesn’t sacrifice one at the expense of another.

When we use images like this, we serve to make distance the continued norm. And by doing that we actually weaken the strategies for inclusion and acceptance. This goes against what a movement of people with disabilities and their allies and families want.  With all our might we want people to be accepted (because rejection is the norm), to be included in their communities (because exclusion is the norm), to be seen for their full self (because most experience is about being seen as the sum total of a ‘label’).

There are great numbers of people who, each day, need any number of very practical tasks done with and for them. They need assistance with lifting, bathing, eating, toileting, transport and mobility, drinking, hygiene, communication etc etc (and all deeply desire for these tasks to be performed with the care that can be seen in this father’s eyes). But these people are also university students, school students, lawyers, government bureaucrats, community development workers, workers of all kinds, worshippers, volunteers, partners, and parents themselves.

When we see images like this, what kind of connection does it establish? Can we imagine ourselves studying with this young man and inviting him for a drink in the cafeteria, or saying yes to offering him a job should someone ask us? Can we imagine our children being friends with him? Can we imagine him as being anything other than cared-for for the rest of his life?

Yes ‘caring’ can regularly be completely shithouse –  tired parents who have cared in this way for years and years and years. Undervalued, un-resourced, taken-for-granted and invisible in our neighbourhoods and our minds. As a sister, I do sometimes (it’s hard to go there) think about the prospect of caring for my brother in his old age (and my old age) and quite probably his final days. What if he outlives me? Yes, I’ve sensed the edge, the unexpressed wish. And one day it will be as real for me as it is for my parents now.

But caring is also a deeply paradoxical and often beautiful experience. I don’t believe you can keep doing the shithouse without the experience – even for the briefest of moments – of the other side. The things you get to see and know deep within your bones about that person because of the deep connection that caring has brought about. The world might not think the person capable of much, but your caring experience tells you otherwise. And because you know this, you keep fighting and you keep caring.

If I hadn’t been helping my brother in the bathroom many years ago, I would never have experienced the first moment I saw him look in the mirror and smile at himself. What a profound moment amongst the banality of caring tasks! The world may think that it is better not to be disabled, but my brother thinks differently. It will power me for the rest of my life.

There have been cherished times with my brother when I have asked ‘who is the carer and who is the cared-for?’ Moments when I have felt terribly down and upset. Now my brother’s disability means he is unlikely to have grasped the complexity of the issue, but he has certainly sensed the emotionality, the feeling coming from me. He has reached out and loved me tenderly in those moments. When I travelled overseas for a long time, apparently he used to go to the top of the stairs at mum’s place and look down to the floor below where my bedroom was, thinking of me in his own way.

When we always portray people as the recipients of care, we again set up an us and them. One can only be the carer and one can only ever be the cared-for.

But I believe relationship and “…attachment arises from the human capacity to move others and be moved by them. Being dependent then no longer means being helpless, powerless and without control: rather, it signifies a conviction that one is able to have an effect on others, as well as the recognition that the interdependence of attachment empowers both the self and the other, not one at the other’s expense.” (Gilligan, 1986)

And this is the point. It is not empowerment if we sacrifice the rights and interests of another party in the process.

Here is an example of an image and an article that portrays things quite differently, while still bringing us into awareness of the issues.