Collage title: 'Two sparrows' (Category: Creative / Artistic)

Name of Submitter(s): Estelle Jobson
Name of Team: Estelle Jobson
Organisation: European Patients Academy on Therapeutic Innovation (EUPATI)

This collage reflects on my first experience of death (and the comfort inherent in poetic words), which occurred when I found a dead bird in my garden, at about the age of 5 or 6. I was grief-stricken and dismayed at the horror of its dead body. My father and I held a little funeral for the bird, gave it a grave, put flowers on it, and read this verse from the Bible: ‘Are not two sparrows sold for a farthing? Yet not one of them shall fall on the ground without [the will or consent of] your Father.’ ( Matthew 10:29)
The collage contains scans of pencil-crayon drawings from my Grade 2 school workbook, age 7: a bird, floral bushes, and a bouquet of flowers. The collage contains a digital reproduction of the relevant page from the Gutenberg Bible (Book of Matthew, chapter 10), in which the Latin text appears: ‘Nonne duo passeres asse veneunt et unus ex illis non cadet super terram sine Patre vestro.’
In my collection 'Apoptosis and deathly musings, each collage contains a central theme/title (printed or handwritten in calligraphy). It contains a literary quote (Matthew 10:29), some bittersweet humour (the polk-dot bird carcass), common cultural references (the retro non-digital camera, polka dots, the grave and cross, and the dead bird itself), and multimedia (calligraphy, cut-and-paste snippets, painting, crayons and pencil crayons, stickers, and other tidbits).
View collections:
http://www.redbubble.com/people/missbehaving/collections/426283-apoptosis-and-deathly-musings
and
http://www.redbubble.com/people/missbehaving/collections/329338-in-visibly-sick

URL for Entry: http://www.redbubble.com/people/missbehaving/portfolio

Email: endo.activist@gmail.com
Twitter: https://twitter.com/SignoraStella
Job Title: Patient activist, writer, artist, editor, publications coordinator

Background of Submitter:

I have been working as a patient activist for the past 5 years, specialising in my own illness: endometriosis. After a long and complex operation in September 2013, which restored to me a significantly better quality of life, I started doing collage art to explore and the express the ramifications of my illness, as experienced by me and channelling the experiences of other women. Additionally, I provide personal support and networking for patients in distress.This is entirely after-hours, and as a volunteer. In my day job, I coordinate publications for a Geneva-based research institute.

Problem / Challenge Space:

As a patient activist living with endometriosis (a chronic, painful, and incurable disease), my illness has driven me to explore, via art, popular culture, and literary citations notions such as: quality of life and lifestyle as medicine, coping mechanisms and stigma, dismantling taboo, contemplations of death, mortality/alive but half-dead, life before and now with illness, life decisions as influenced by chronic illness, the patient relationship with healthcare providers, disease-related science, and the epigenetic damage and transgenerational transference of illness.

Approach / Methodology:

PowerPoint presentations, slideshows on a large screen, leaving a folder of colour printouts for browsing by passers-by, showing in person, art-making workshop (forthcoming).

Extent of showcasing BL Digital Content:

In this collage, a page appears from the British Library archives of the Gutenberg Bible. I sourced the image for the particular verse in Latin cited in the collage from the paper edition of the Gutenberg Bible (not vellum): Argumentum in Matheum, Volume 2 Folio 190v). The exact verse appears printed out larger, and legible to the left, overlapping with the page itself.

Impact of Project:

1. On 18 December 2014, I held a slideshow of my art on chronic illness at an awareness evening held by endometriosis specialists for the public at the Geneva public/university hospital. It was attended by about 80 people.
2. For 10 days in March 2015, as part of endometriosis awareness month, I showcased my art on chronic illness during a 10-day endometriosis awareness event held in the reception of the gynaecology department of the public/university hospital in Geneva, Switzerland. I cannot estimate how many people viewed this art, as the folder was left for browsing day and night, during the period.
3. On 25 March 2015, I did a 20-min presentation (including artwork) at the Swiss platform event of the European Patients Academy on Therapeutic Innovation (EUPATI). This was attended by about 50 people from pharma, patient organisations, and research bodies.
http://www.scto.ch/en/Events/Patient-empowerment/EUPATI-platform-Switzerland-2015.html
4. I will be sharing my art with fellow students doing the expert patient training course with me starting in October 2015, via EUPATI.
www.patientsacademy.eu/index.php/en/
5. In the course of 2015, I will be running a collage workshop with endometriosis patients at the cantonal hospital of Geneva. This planning is underway.

Issues / Challenges faced during project(s):

I am a new artist, with no formal training and with a very small following. I have taken the opportunity in my health-related activism to share my art, hoping it will resonate with other patients and create awareness about our common but taboo-riddled illness. I share this art at all related events I attend, whether in a presentation, or I carry a folder of colour copies and show it as the situation arises. My art is all browsable on redbubble.com, a website supporting freelance artists, and as each artwork is meta-tagged, people may find it if they are interested in related topics