14 January, 2018

Prof Nichola Rumsey updates adjustment to visible difference

From the eminent UK psychologist Professor Nichola Rumsey. The state of knowledge on the psychosocial impact of skin conditions that alter appearance. Alopecia gets a specific mention - Your psychologist will love this!!!
Free download.

12 February, 2016

Zarleen Blakeley's approach to portraiture "I'm not my hair"

Zarleen's self portrait (used with permission)

Zarleen is an Australian photographer who has demonstrated an alternative wholistic approach to presenting portraits of women who for various reasons have lost their hair. Her project “I'm not my hair” is a '.....portrait series of women who have a hair loss condition but are not defining themselves by it'

This is an empathic and humane visual communication of the hair loss experience. We know these women from what they tell us because the photographer has encouraged them to co-create their image and to communicate more than their hair loss appearance, in marked contrast with more clinical approaches.

To quote the photographer :

The series depicts how they are more than their hair and shows each person in an environment where they're enjoying something they're passionate about, including music, books, road-tripping and photography!"
See the portraits on Facebook  http://on.fb.me/1Vwlnny

05 February, 2016

No Lights No Lycra Goes Global! Sixty locations worldwide.

In September 2014 we posted on the No Lights No Lycra phenomenon.
It's gone global people!! No Lights No Lycra now exists in over 60 diverse locations worldwide. Here's an update from Assemble Papers writer Hudson Brown.

Alice Glenn and Heidi Barrett at Schoolhouse Studios in Collingwood, Melbourne. 
Photograph by Tom Ross.

One of the founders Alice explains in the interview
“I think one of the biggest things is to try and forget what other people think of you. That’s the darkness aspect – a place to dance where no one else is watching. You don’t have to worry about what you look like; you don’t have to worry about seeing yourself in the mirror because often, we are our own worst critics. It’s a chance to just enjoy what it feels like to dance,”

12 September, 2015

Women with alopecia presented as 'whole'

Alopeciology loves those portrayals in which women speak for themselves, look confidently outwards and where their appearance, their individuality and their identity is enhanced and promoted by what they wear and when the image production values respect them. This video from Vogue ticks all the boxes
A top video via Vogue “Living Bald: Life After Hair Loss” (9 Women Tell the Truth About Life After Hair Loss) Personal accounts from women who experienced hair loss from different causes.

Definitely a 10!

13 August, 2015

Alopecia Portraits: Who and what is in the frame?

Some statistics for the images in the 3 alopecia galleries by photographers Sigga Ella, Daniel Regan and Anthony Griffin

Images show (approximately)
Female subjects 95%
Head and shoulders only 100%
Eyes open 52%
Smiling 5%
Clothing barely visible or not visible: 60%
Over 50 years old (estimated):20%

In visual terms, if these galleries represent a developing genre of alopecia portraits I think this is a reasonable description of the style,

"Virtually all will be young caucasian women under 50, head and shoulders only will be shown, and fewer than half will be shown wearing clothing, only about half the subjects will return the camera's gaze and very few will smile".

I hope that if we see more alopecia portrait galleries that we can see a less passive subject and know a little more about them visually and in text.

08 August, 2015

Photographic portraits of alopecia: Should I close my eyes?

A recent lively discussion on Alopecia UK’s Facebook page showed a variety of responses to one series of intimate portraits of people with alopecia . The emotional consequences of critiquing these photos surprised both the supporters of the photos and the critics. Maybe it shouldn’t have. What follows is an attempt to explore some of the reasons we should be thinking more about how images of people with alopecia are created and exhibited and what values we might promote in both creating and participating in these projects.
Patricia Crotty 8.8.2015

There are now a number of readily available online alopecia image galleries created by professional photographers, for example by, Sigga Ella (http://siggaella.com/projects/baldvin)/, Anthony Griffin (http://www.agp.ie/aub/) and Daniel Regan (http://danielregan.com/alopecia/). Audiences for these images include, the subjects of the photographs themselves, the subject’s family, friends and supporters, the wider audience who have alopecia, the general public (awareness raising), the photographer’s peer group (other photographers) and the mass and social media.

Until Joseph Gatt, who has alopecia himself, raised some issues(1) we may have believed that assessing the ‘success’ of these projects was simple and straightforward. Clearly it isn't. Joseph has done us a great service by bravely raising possible ‘downsides’ to these projects, that is the qualities of the images created. Learning from a critical discussion of these projects should be welcomed in this new age of social media and the ready availability of images of people with hair loss, especially women. A critical discussion of these projects will be painful for some, perhaps many, people with alopecia, therefore a more considered response than ‘everyone is entitled to their own opinion’ would be helpful. Viewers of these photos may not only have ‘opinions’, but legitimate concerns such as, the quality of the images from a photographic perspective. It is very likely that many if not most portrait subjects, will experience a truly positive outcome -  a sort of post traumatic growth, as a result of their participation. However, what if the 3 projects were compared for an assessment in photographic terms?  These are all very intimate images and it seems likely, and understandable, that there will be very personal reactions even when images are critiqued as an image. But from an artistic/professional perspective, it is inevitable that the projects and the photographers’ works will be critically assessed and probably not universally praised.

Do we know anything about the impact of these galleries' focus on disembodied head shots with no context, colour or personal information? Their emphasis on skin tone and texture, largely by showing no colour or clothing. It might make an arresting photo, but what story does it tell? It seems possible a photographic genre is being created for women with alopecia.  Anthony Griffin in discussing his project, quotes John Berger the art critic and author of ‘Ways of Seeing’, as saying “men act and women appear”.  How would a female photographer who has alopecia, capture the essence of men with alopecia I wonder? 

These galleries of alopecia images do not stand alone, they are embedded in a certain cultural, social and technological context. Are we seeing a reproduction of Berger's view? 

So much more could be discussed about the creation, use and impact of images of people with alopecia, particularly of women, who make up the vast majority of subjects of alopecia photographic portraiture.

There will inevitably be more of these projects and organisers could prepare participants with the best available information about the possible impacts, positive and negative, of their participation, both on themselves and on other audiences.

I’m sure the more professional organisations do address this, but there is a paucity of research on many relevant issues, eg. 
What specifically is the nature of the success the projects are striving for? What expectations do participants have of the outcomes for them? What do we mean by ‘raising awareness’ and how do the wider public respond to particular kinds of images?

There is a duty of care and an issue of informed consent for participants in these projects and I'd love to be able to read a strong evaluation of their outcomes.
That requires resources, but it is important.

The national alopecia organisations could make a great contribution by taking on these issues and making a thoughtful and educative discussion possible.


1.  Basically the critique centred around an assessment that the photos were unflattering and unhelpful in promoting positive images of people (principally women) with alopecia. The supporters’ arguments for the photos were around how beneficial participation in the project was for them and how they felt the photos contributed positively to their self image.


About me
I am 73 years old, have had alopecia since age 6, have had the totalis form since age 24 and was part of a small group that started a support association for alopecia in 1980 in Melbourne, Victoria, Australia. I was in my early 30s before I saw another woman without hair.

I currently curate the website for Alopecia Victoria (www.alopeciavictoria.org.au), the much neglected magazine “the alopeciologist” and this blog. My current project is working with a small group of friends and the staff at the Skin and Cancer Foundation in Melbourne and Body Map (http://www.bodymap.com.au), to develop an education and support program for people with dermatological disorders, especially alopecia, which have a negative impact on appearance and self confidence. 


20 February, 2015

World Championship cycling in France

The Australian Women's pursuit team are the world champions......Johanna Rowsell is part of the UK silver medal team, but pure gold as a role model for young people with alopecia!!
Johanna on the podium at the World Championships 

19 February, 2015

First Alopecia Victoria event Feb 26th in Melbourne

Dr Nadine Cameron from Body Map will be presenting at this evening event in Carlton, Thursday 26th February 6.30 to 8.30, First Floor, 80 Drummond St, on the corner with Queensberry St.
There'll be time to chat with old friends and meet new ones. Join us!!
$5 on the night.

RSVP to alopeciavictoria@gmail.com

28 October, 2014

Self compassion and mindfulness

Have you ever wondered when thinking about the emotional and psychological implications of losing your hair, how a psychologist with alopecia would deal with it? Well, Dr Cheree Hammond has shared her perspective.  She teaches counselling and mindfulness at a US university and this is a lovely and thought provoking endorsement of the value of self compassion and mindfulness in creating an emotional environment which promotes the positive and creates valuable learning.

A great article! Read more https://bit.ly/2JBrZVL