I am not my Body. A story about euthanasia. - PhMuseum

I am not my Body. A story about euthanasia.

Michel PETILLO

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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  • Here we see Claire in a scanner for the purpose of establishing whether her spine is sufficiently aligned to receive the electrodes and neurostimulator implant that would manage the pain signals from and to the brain.

  • Claire is Impaired since the age of 9, wheel chair bound, living with constant severe pain in her foot and suffering from spastic quadriplegia - a form of spastic cerebral palsy. Regardless of her condition and her returning wish for euthanasia , Claire continues to embrace life to its fullest. Here, Claire is travelling on her own to Marrakech.

  • Claire enjoys swimming as it eases the pain. However, going in and out of the pool requires a tremendous effort to the point that she needs the assistance of social workers.

  • Claire regular visits hospitals be it to get a morphine detox, to revisit her pain medication or to check op on her health.

  • Claire at the chiropractor. Being in a wheelchair most of the time is damaging to her back.

  • At first the operation was a success. A few weeks later however, the pains returned and the wish for euthanasia resurfaced. She is currently on a different pain management protocol that still includes morphine.

  • Moving around with public transport is quit the undertaking especially when facilities are not geared towards physically impaired people. Most of time, when there is an elevator to change platforms, they are broken.

  • Impaired people are often considered as a-sexual. Although this is far from true, finding a partner is no easy feat. In Belgium there is access to specialised professional sexual services. Here we see Claire with her male lover, who she actually met by chance.

  • Claire’s operation and final hope to be freed from pain. Claire was fully aware during the intervention as the effect needed to be tested for maximum efficiency.

  • Claire continues to look for solutions to manage her pain. In the mean time the pain modulator has even removed as it caused an sub-dermal infection. The electrodes are still in place. In 2019 Claire renewed her euthanasia application. The future looks unclear.

  • Claire performing with the theatre group she is part of. The play is called the Great Sextacle and its central theme is about sexual diversity, gender equality and the demystification of sex in general.

  • Suffering from severe pains and the perseverance to hold on to life is by one part of society very much revered as fulfilling God's will and praised as a strength of character. Claire does identify with this narrative.


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