Club of the Autoimmune Eccentrics: The Manifesto
By Barb Macek, founder of the CAE, autoimmune eccentric
Admitted to the CAE are carriers of auto-antibodies or persons with other traceable manifestations of autoimmunity, who beyond this / in addition to this / are united in the quest for searching and finding the meaning of the autoimmune processes of their organism.
Not only the presence of manifestations of an autoimmune organism, like auto-antibodies in the blood, is a criterion of admission, but also a posture and a life-style that refers to our existential positionality as eccentrics, and that is executed and performed in consciousness of the fragility and inner disintegration, as well as the ambivalence and ambiguity of our existence.
Eccentric positionality may express itself in outsiderism, in a marginal existence (existence at the periphery of society) a life on the fringes of society, or in a general movement “in the opposite direction” as Thomas Bernhard formulates it in his autobiographical novel “The Cellar”1 (p. 422), and as he practiced it until his death.
I have begun to suspect those of us affected by immune-related conditions to be an involuntary avant-garde. Placed at the forefront of how illnesses develop today, our bodies become the site for a parallel climate change from within.2 (Lind, 2020)
The exclusivity of the CAE stems from its conditions of admission, but also from a new self-conception or self-image, as being part of a new avantgarde that, with its autoimmune constitution, precedes the development of humanity – probably in the direction of a reformed humanity.
Dead Honorary Members
- Thomas Bernhard, writer, diagnosed with sarcoidosis (Morbus Boeck3);
- Paul Klee4, painter, diagnosis: systemic sclerosis5;
- Flannery O‘Connor6, writer, diagnosis: lupus (SLE).
EeE – Expressions of eccentric Existences
At the heart of the CAE’s program are the expressions of an eccentric existence (EeE), according to Helmuth Plessner’s concept of positionality. They mean to express / perform eccentricity as an existential position with artistic, in particular poetical means.
The meetings of the club take place in virtual space, in form of a monthly Zoom conference. New members introduce themselves in a way / form that corresponds with their personality. The main purpose of the meetings is the exchange of artistic/textual/ medial works that deal with autoimmune processes in the context of eccentric positionality.
An art-historical reference work for the EeE is the installation „Zeige deine Wunde“ (Show your wound) by Joseph Beuys (1976), who explained in an interview: „Show your wound, for you have to reveal the illness you want to heal.” This is the motto of the CAE.
We are also looking for a way out – out of our vulnerability, shown by the symptoms of our body, out of our depression, caused by suffering from a chronic disease, out of our fear of death – by emphasing a situatedness far away from the center, i. e. our eccentric positionality, and by continuing our efforts to move in the opposite direction.
3 Sarcoidosis (first described by the Norwegian dermatologist C. P. M. Boeck) is a disease characterized by the growth of tiny collections of inflammatory cells (granulomas) in any part of your body — most commonly the lungs and lymph nodes. But it can also affect the eyes, skin, heart and other organs. The cause of sarcoidosis is unknown, but experts think it results from the body’s immune system responding to an unknown substance.
4 Klee was diagnosed at the age of 57, after that his style changed fundamentally, the colors became subdued, black started to dominate the compositions. Prominent art works of this final period of his life are „death and fire“ and „captive“ (both dated from 1940).
5 Systemic scleroderma, or systemic sclerosis, is an autoimmune rheumatic disease characterised by excessive production and accumulation of collagen, called fibrosis, in the skin and internal organs and by injuries to small arteries.
6 American novelist, short-story writer and essayist (1925 – 1964). When she was six, British Pathé News made a feature about her chicken that she had trained to walk backwards [British Patheé (1932). “Little Mary O’Connor”. Retrieved from https://www.youtube.com/watch?v=HtEGF6NVzUg]. As an adult she was still fascinated by birds of all kinds; she raised ducks, ostriches, emus, toucans, and peacocks, lots of peacocks. In 1952 O’Connor was diagnosed with systemic lupus erythematosus (lupus). She lived for twelve years after her diagnosis. Despite the debilitating effects of the steroid drugs used to treat O’Connor’s lupus, she made over sixty appearances at lectures to read her works. Writer Alice McDermott explains the impact lupus had on O’Connor’s work, saying, „It was the illness, I think, which made her the writer she is.” PBS (March 2021). American Masters: Flannery. Season 35, [TV]. Retrieved from https://www.pbs.org/wnet/americanmasters/how-did-flannery-oconnors-writing-reflect-her-disability/17614/).