Private public spaces

Had an interesting discussion with a mate on Facebook last week around the ethics of taking photos of people in public places and putting ’em on a blog. She said that she wouldn’t like it if a photo of her was posted online and discussed without her knowing.

What is ‘public’ and what is ‘private’ is a chewy philosophical area. And I’m always struck by the ‘private’ activities people do in ‘public’ spaces (see below). To be honest, I was surprised and pleased to find out there are no rules about permission/consent (unless you want to use the photos for commercial purposes – slight qualifications outlined here).   Basically you can crack on happily.

This is so unlike academic research which is subjected to such scrutiny by ethics committees that it can be unproductively constraining, frustrating and time consuming. But going back to the Facebook discussion, just because there are no rules about this, should I photograph and post images of people without consent?

Well I’ve decided to set my own ethical standards in addition to those outlined in the above link;

  1. If someone wants their photo removed from this blog, I’ll remove it straightaway.
  2. If I’ve photographed someone and they would like a copy, I’ll email a high res version or send a print.

Job done. (As long as a train is considered a public space…)


Whose story is it anyway?

Got my first negative blog comment (on the ‘about’ page) this week. From someone from the masterclass of all places. Anyway, it raises the issue of should I be writing about LB on this blog? What right do I have to do that? And shouldn’t he be telling his own story?

Well the latter is easy to answer. Yes, of course he should. If he wants to.

The other questions are less straightforward. I had a long chat about this recently with a colleague who has a long term condition. She said she felt a bit irritated by her mum always telling her story over the years. And still.


I don’t think people have their own, exclusive, story. Disconnected from those around them. There are multiple stories that overlap with other stories. On this blog, I’m not telling LB’s ‘story’. I’m recounting the experience of being LB’s mum.

I think it’s important to share these experiences not least to raise awareness of the lack of support for learning disabled children/adults but also because LB’s ways of being and doing makes visible mainstream practices that are taken for granted and unquestioned (see The Unlikely Ethnographer).

It has also had (the unanticipated) consequence of providing other people with a way of chatting to him and about him, and asking after him or about him.  It’s given him a space to be known. I kind of knew (but being immersed in the everyday chaos that comes with a less straightforward life didn’t really do anything about) how difficult it is for people without experience of difference to engage with it. This meant that LB was often not a part of my interactions with the wider world. Now he is. In an ordinary way. As a funny dude who loves lorries.

Chewy stuff.


A Camden masterclass

Spent the weekend at a street photography Guardian Masterclass run by Antonio Olmos. Well what can I say, other than a complete pleasure. Great teacher, classmates, setting and food. I learned a lot (see below).



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Top things I learned;

  • Always shoot raw (I knew this but I now understand why).
  • Don’t delete photos on the camera; you don’t know till you start to edit, whether they are any good.
  • Don’t zoom, get close (use a 50mm fixed lens).
  • Travel light and NO lens cap.
  • Take first, worry about the consequences after (i.e. don’t get overly hung up on ethics or you’ll miss a good pic).
  • People generally are happy to be asked to pose for street photography.
  • There is no problem with taking candid shots of people in the street without their permission.
  • ‘Work a scene’… don’t just snap and walk off in search of ‘another good pic’, hang around and keep taking photos.
  • Anticipate events and get into position.
  • Expect only one or two good photos on average (brilliant photographers take crap pics too).

A day out, autism and the good life

Some pics from a London day out at a conference, Autism, Ethics and the Good Life, organised by the British Academy.

The audience, made up of autistic and non autistic people, academics, parents, siblings, clinicians and other professionals, contributed as  much as the brilliant range of speakers, to make what was, with a tasty lunch thrown in, an inspiring, challenging and thoughtful gig. Oh, and did I mention? Eva Kittay was there.

What do we know? The case of Ashley X

There has been a lot of controversy around the  Ashley X story (see here). About whether or not the various ‘keep small’ procedures (hysterectomy, breast bud removal, high dose oestrogen) performed on the six year old, profoundly disabled, child were ethical. I’ve been thinking a lot about the case after hearing  feminist philosopher, Eva Kittay, talk about it at a symposium I was at this week.

EK (would call her Eva but it seems a bit familiar…) began her talk asking who can criticise the decisions of the parents? Well if anyone can, arguably she can. She has a disabled daughter, Sesha, who is in her forties. There are similarities between the two girls.

To summarise her talk, EK carefully went through the arguments raised by Ashley’s parents in support of their desire for the treatment. Basically, the parents wanted their “pillow angel” (hold the shudders for now, eh?) to remain portable so she could still go on holidays and live at home, avoid the discomforts associated with periods, etc and not be sexually attractive (or fertile) to unscrupulous men who may come her way. Those in favour of this treatment argue that the ability of the parents to care for their daughter trumps their daughter’s rights. The child isn’t cognitively aware, won’t ‘need’ her womb, will be vulnerable to abuse, and so on.

EK drew on her experiences with her daughter. She talked about ‘moving through time’ with Sesha. How Sesha developed over the years. Not in ways that fit any recognisable prescribed developmental patterns, but a maturation in her own way. This reminded me of the meal, Rich, LB and I had in a Chinese restaurant last week. It happened that LB was the only kidlet at home that evening, and the option was stay in (with him) or go out (with him). It was a sort of funny, sort of haunting experience. I tried to deflect the flashes of the future that pinged into my thoughts. Rich, LB and me. Out and about.

Chatting about this meal out (together but ‘with’) led to reflections from a few other parents of disabled children. They too had thought about being out and about with their ‘toddler like’ but adult children.

I used to think of it that way too but in reality, LB was nothing like he was when he was younger. He has moved through time too. He is still demonstrably crazily unusual, but he has grown and matured. When I turned up straight from work, he said “How was work, Mum?” That was a jaw dropping moment, that I thought I’d misheard at first. After that, he chattered to himself, ignored us,  stuffed his crispy duck and pancakes and became increasingly obsessed about the cleanliness of the tables. The journey home involved a shedload of repetitive hygiene discussion.

But it was different to taking a younger LB out.

EK described how Ashley’s treatment removed her ability to grow older and kept her frozen in time. She provocatively asked why, if her parents wanted her kept smaller, did they not cut off her legs? She argued that support should be provided to enable Ashley’s parents to care for her at home, protect her from evil and enable her live across a life course. She argued, convincingly, that ‘we don’t understand the contours of our choices’.

And we don’t of course. Though it is often more convenient to ignore that. Especially in the case of profoundly disabled children/adults when we know so little about their lives. Unfortunately, assumptions pervade. The personhood or even humanness of  children/adults with profound learning/physical impairments is under persistent threat.  Frightening when they pretty much comprise the most vulnerable, marginal group in society.

It was a moving, powerful, distressing presentation. A technical hitch meant that the notes were missing for the last few slides. This led to some fragmentation of the prepared talk. EK ended up returning to the question (asked of the parents, medical professionals and others who support the treatment); ‘Why do they insist they know, when they don’t know?’ I’m not sure how much this question featured in her missing script but, for me, it is a question that goes to the core of this debate.