What did the person want?

In 1995, the French Counseil d’Etat ruled that ‘dwarf throwing’ (lander de nain) was incompatible with ‘ordere public’ because the persons involved compromise human dignity by allowing themselves to be used as ‘mere things.’[1] The people of restricted growth in question had contested that it was both the manner via which they made their living and furthermore that they chose to do so freely.   The case, alongside others, raises deep philosophical questions regarding the meaning and nature of human dignity and in particular the balance to be struck between individual autonomy and wider conceptions of the public good.

Fast forward to 2016 and ‘that photo’ of a man with a learning disability using a wheelchair piled high with shopping bags while his support worker talks on the phone and smokes a cigarette. Like many others I reacted with revulsion at what appeared an image of outright callous disrespect for human dignity at best, calculated abuse at worst.

But then someone gave me cause to question what I had seen, and it is that account that Mencap now appear to have concluded, following ‘an independent review’ and that of the safeguarding authorities, to be correct. Namely, the individual asked for the bags – his shopping bags – to be placed on his wheelchair table, while the support worker made the phone call.   Mencap has censured the support worker for making the call and for smoking while ‘on duty’ and we might wonder whether, had she not done so, the bags would have needed to be placed there at all. But safeguarding authorities and an independent investigator for Mencap have concluded that the image does not depict what many of us concluded it to because, in essence, the man was exercising autonomy and the support worker was respecting it.

As with the French case above, responses to the image and the actual events surrounding it (insofar as we have a reliable account) centre on the trade off between ‘objective’ and ‘subjective’ conceptions of human dignity. That is to say, between what a person deems acceptable for themself in accordance with their own will and preferences and what we deem acceptable for the person and society more generally.  But they also raise questions about our belief in the capacity of people with a learning disability to exercise autonomy sufficient to have a reliable sense of subjective dignity.

In our initial reaction to the image, how many of us stopped to consider that the man may have asked to have his shopping bags placed on his wheelchair tray? Why didn’t we? Was it because in the picture he looked swamped and uncomfortable and hence couldn’t possibly have asked to be placed in such a situation? Or was it because irrespective of his will and preferences we believe that the support worker shouldn’t have allowed such situation to occur (which we have concluded, from the photo, only took place because of her decision to stop for a cigarette and a phone call, despite the fact that we know nothing of what happened immediately before or after, or on other occasions, as far as I know).  Might it also be because the dominant framing of disability widely and learning disability more specifically has been for some time now that of victimization and abuse that we are led to interpret such images in this way?  That even if he did ask for the bags to be placed there that we do not accept that he would not have done so freely but as a result of fear or pressure?

In many ways we might take heart from widespread reaction to the photograph. Isn’t it positive that an objective conception of dignity exists sufficient for people to be alarmed by an image such as this one and to demand action? Certainly in many cases of disability hate crime there have been reports of passive bystanders who could have intervened but who chose not to or who became complicit by, for example, watching and laughing as a gang caused a man with learning difficulties to drown at Lakeside Shopping Centre.   We might also be acting from an instinctive sense that there exists a power imbalance – that as a result of both the person’s impairment and their dependence on the support worker and others the person is limited in their power to exercise free will. This might arguably have helped inform our interpretation of the image.  Conversely the image reinforced that interpretation: here was a person with a learning disability being ‘done to.’   It also seems to be why many still continue to feel that harm was done and that justice has not been served in Mencap’s response: isn’t the man’s reported perspective a little too convenient and how can we trust it, coming as it does from Mencap itself?

Alternatively our reaction might in reality be another case of what was once described to me as ‘malevolent benevolence.’ While we would like to believe it came from a place of kindness and concern, what lay beneath is our prejudicial view that people with a learning disability lack the capacity to exercise choice and control, especially where we might take issue with a persons choices as here. Here, objective conceptions of dignity continue to trump subjective ones: the desire to protect people with a learning disability from themselves and others trumps our commitment to respect people’s will and preferences.

Isn’t it precisely such denial of voice and choice in the name of protection that has placed and which continues to place so many people with a learning disability at risk? It underpins institutionalization and restrictive social work practice in areas such as personal relationships or the opportunity for people to be parents.   It is the basis for so-called ‘diagnostic overshadowing’ by medical professionals which is responsible for avoidable ill-health and mortality.   It helps explain the institutional failure of the criminal justice system to respond to disability related harassment and hate crime.

Via Twitter a colleague said to me of Mencap’s decision: ‘I’m just worried about the signal this sends to society at large’. But I think that unless there is evidence or indication of harm (and this image did of course appear to indicate harm), that we should be equally worried about sending a signal that a person’s will and preferences should be ignored and a support worker punished for respecting them.   By prioritizing objective conceptions of dignity over subjective ones, don’t we just perpetuate the myth of ‘protection’ and the denial of choice and control? Don’t we encourage people not to listen and help prevent people with a learning disability from being heard?

While I understand that they have a duty of care both to the man concerned and to a member of staff, I think that Mencap’s statement explaining the decision has left too many questions unanswered. I expect Mencap want to put the whole incident to bed now. But a brave organization will see it as an opportunity to open up a debate with the public about the attitudes, behaviours and practices that this event raises for them as an organization that is dominant in the life of people with a learning disability, for those commissioning, delivering and inspecting services, for people with a learning disability and their families and for society at large.

And the rest of us, however professed our commitment to the human rights of people with a learning disability, will always remember to ask: what did the person want?

[1]Conseil d’Etat (1995) req nos 136-727 (Commune Du Morsang-Sur-Orge and 143-578 Ville D’Aix-en-Province

1 thought on “What did the person want?

  1. There wad an excellent interview with Trevor Philips on R4 1.45 Sun. Making similar points about different issues. Ithought whilst listening, much of tjis could apply to the disability world -where duscourse and thought are sometimes dominated by frameworks that inhibit genuine probing. Equally though with regard to the photo the act of smoking still places an element of doubt – even if there was a desire from the person to carry their own bags, and what.support did the perrson have to negociate – talk about a reasonable number of bags to carry. There is still very much a wiff of something thoughtless, about yhe image. The cigarette, sirt of gives it away and maybe you are reading too much into the free will of the person with the bags. The one we cannit hear from for all sorts of protection -thst may still be only protecting the support worker.

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