2016 - Ongoing
Brussels, Brussels Capital, Belgium
This photo documentary, a portrait of Claire Coché, sheds a light on living with impairment and pain, and the freedom and courage to find a solution regardless of the moral and legal indictments. It sets out to document that euthanasia, contrary to suicide, is not triggered by a severe depressive state. It is a conscious decision and a deeply human journey where the dichotomy of right and wrong must make way for compassion and hope.
In the summer of 2016, I met Claire C. a then 33-year-old wheelchair-bound woman, suffering from severe debilitating pains in her right foot, epilepsy and spastic quadriplegia - a form of spastic cerebral palsy. Since the age of six, her life has been about life-threatening accidents, invasive operations, severe painkillers, and ultimately wanting to end her life. Nevertheless, she remains hopeful, owns an apartment, hosts refugees, travels the globe and is a theatre performer.
Ever since the pains in her foot started in 2012, she has been seeking a diagnosis and an effective treatment as medical specialists could not find anything physically wrong. They attributed the pain to past trauma and referred her to mental health care as a last resort. In 2017, one physician took up her case again. He anesthetized locally the main nerve in her leg to see whether the pain was “real”. The intervention revealed the pain to be the result of nerve damage, most likely due to the invasive operations to treat her spastic quadriplegia. This discovery cleared the way for a spinal neurostimulator implant in the autumn of 2017. Initially the procedure appeared to be a success but a few weeks later, the pains reoccurred, and Claire, once again, expressed her wish to recommence the procedure for active euthanasia. In March 2018, she turned to cannabis oil or CBD-oil to manage her pains. This new glimmer of hope put euthanasia on hold once more. In the meantime she has gone through detox to kick her morphine addiction and her medication intake is being constantly managed with very little effect. Last year, Claire renewed her euthanasia demand.
This journey is a challenge on many levels. The photos and the settings in which they are taken, are at times confrontational, private and delicate; inviting Claire to revisit old trauma, challenging her beliefs on love, life and death, and redefining her relationship with her parents and friends. As a photographer and part-time psychologist it is not always possible to merely observe from the sideline. From time to time, I find myself involved by offering some form of support and counsel.
Ultimately, and ideally, this body of work will contribute to the discussion on euthanasia and will convey a message of hope instead of despair. In Claire’s words, this entire journey is “an act of liberation”.
Claire is now written down her life story that will accompany this body of work in book form. Last year 100 postcards with different images from the series have been sent out worldwide to collect people's thoughts. A limited number of returned postcards will be included in the book. A book dummy is the making and will continue a greater number of images, and we are actively looking for a book publisher and funds to get this work printed and distributed.
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