‘A Disabled Genius in the Family: personal musings on the tale of two sisters’

A Paper by Helen Meekosha. Copyright 2000.

In July 1987 Nancy Mairs a leading North American essayist, activist and author wrote:

For months now I’ve been consciously searching for representations of myself in the media, especially television. I know I’d recognize this self because of certain distinctive, though not unique, features: I am a forty three-year-old woman crippled by multiple sclerosis; although I can still totter short distances with the aid of a brace and a cane, more and more of the time I ride in a wheelchair. Because of these appliances and my peculiar gait, I’m easy to spot even in a crowd. So when I tell you I haven’t notice any woman like me on television, you can believe me (Mairs 1996:31).

Jacqueline du Pre died in October 1987 aged 42 years. She was the world’s leading cellist in the 1960s and early ’70s. In October 1972 at the age of 28 years she had been diagnosed with MS (which she came to call “multiple fuckosis”). Nancy Mairs got her wish, a woman like her on the TV – though no doubt it would not have been what she exactly had in mind.

In 1987, I heard the news of the death of Jacqueline du Pre whilst on a plane. It affected me profoundly. I wept. Like many of my generation I had been in love with her performances of Dvorak, Saint-Saens and, in particular, of Elgar’s Cello Concerto, but I was also impressed by her outrageous and adventurous behaviour that shook the classical music establishment of the ’60s. I had been preoccupied by news reports of her illness and her decline and studiously read every mention of her in the press. I too had been diagnosed with MS at the age of 28 – was British and middle class, although not even a musician let alone a brilliant cellist. When I reached my 42nd birthday (in 1993) I felt a sense of foreboding. Would I too die at 42? Two of my friends with MS were also deteriorating rapidly and it was clear they would die soon.

Yet these things remained unspoken. After all it was then 1993, when activists and commentators were proudly declaring that disabled people were not ill, but normal, everyday, sort of people. The emerging disability movement was focussing on the demand for citizen rights, claiming specific discrimination. In 1990, the US movement had won the Americans with Disabilities Act, while in Australia the Disability Discrimination Act had been passed in 1992. The rhetoric which saw the impaired body as deficient, we all agreed, belonged to an oppressive discourse coming out of the controlling disciplines of medicine and rehabilitation.

In 1998 the book “A Genius in the Family” by Hilary and Piers du Pre – Jacqueline’s brother and sister – was published and the film “Hilary and Jackie” was released in the same year. I devoured the book and eagerly awaited the movie. An earlier film inspired by her life “Duet for One”, concentrating for the most part on her relationship with her psychiatrists, had fitted the classic genre of the tragic, obsessive, woman cripple, yet portrayed none of the complexities of a life with MS.

The film “Hilary and Jackie” (Dir: Anand Tucker 1998) could not be dismissed so easily. The film essentially attempts to explore the relationship between the two sisters and moves between telling the tale from first Hilary’s perspective and then Jackie’s. Some critics have noted the connection between the movie “Shine” and “Hilary and Jackie” – the tragic, tormented and mad genius – unable to do the only thing they know how – play music. But for me “Shine” represents some of the worst features of representations of disability in film. While “Shine” played into the stereotypes, “Hilary and Jackie” attempted and in my opinion succeeded, in moving beyond them (see also (Shakespeare, 1999) for a discussion of “Shine”).

It is the relationship between the sisters that is explored in detail – from children to teenagers to adults, and the tensions and contradictions are thoroughly worked through. Jackie’s husband, the world famous conductor Daniel Barenboim is somewhat marginalised by the intensity of the relationship. He refused to cooperate with the project – reportedly saying “Couldn’t they have waited until I’m dead?” (Anon 1999a). A key tension in the film is Jackie’s desire to share Hilary’s family life and husband – sexually and emotionally. Jacqueline is the success story – but Hilary has happiness and her family. Life on the road proves too exhausting for Jackie and she eventually goes “mad” Or does she?

Women with MS will instantly recognise and identify this process of “madness” – exhaustion, lack of confidence, ambivalence towards work and career, days spent in bed, depression, strange and numbing bodily sensations, lack of coordination, incontinence (often incorrectly diagnosed as cystitis). Few women in earlier generations were lucky enough to get an immediate diagnosis, although it is easier now with advanced technology such as MRI. A period of madness and visits to psychiatrists nearly always preceded a diagnosis.

My criticism of the film is that it plays along with the spectre/stereotype of the tormented mad genius and in turn the critics pick up on this aspect. Critics reveal that they know little of MS, in particular that MS is a systemic condition capable of affecting the emotions and the cognitive processes as well as the physical body. The mind/body dualism cannot be so neatly split.

Thus, the film (and the book) leaves it unclear whether madness is part of being a “genius”, or part of the condition known as MS, or both. Critics make much of Jackie’s bouts of depression and “madness”, reminiscent of their perception of Emily Watson’s (who plays Jackie) role in Lars von Trier’s “Breaking the Waves”.

  • Watson’s bravura performance shows us the agony, the ecstasy and the ruthlessness of genius (Anon, 1999b).
  • As the condition ravaged her body and robbed her of the ability to play, it brought on profound personality imbalances that created tremendous friction in her family (Anon, 1999a).
  • We learn that great artistry often comes at a terrible price; how a well-meaning but overambitious parent can create awful familial dysfunction that literally then destroys lives; how human nature seeks to hold others to blame for the inexplicable; and how the lives of the apparently enviable and glitteringly successful can so easily, in reality, be private hells. (Clinch, 1999).

There are a number of potential audiences for this movie, disabled people, including people with MS; the families and carers of people with MS, music lovers and, of course the general public. Sampling a number of reviews by film critics, from the more establishment print media through to magazines like Esquire, displayed an interesting array of interpretations, many of which are familiar to those in the disability studies arena. I became increasingly interested in how the reviewers could interpret a well-executed film in the classic stereotyped way. The reviewers of “Hilary and Jackie” predicably fall into those film clichés that many disability studies writers have criticised for their shallowness.

  • She wanted the normalcy that her talent denied her. Then, when MS ended her career and left her alone and dependent, she had to cope with the loss of her defining characteristic, powerlessness, and death. (Berardinelli, 1998).
  • ……the horror of her slow slide into emotional and physical darkness (Bennett, 1998)
  • ……an artist/monster who devoured anyone who came near……….. … neediness, vulnerability and talent became a kind of sick greed (Ringel, 1999).

One reviewer argued that “the film is somewhat saddled by the fact that it has to end on a deathbed” (Kendrick, 1998)- unlike David Helfgott, in “Shine”, who was rescued by the familiar woman/carer. Du Pre did die and it was not a “nice” death.

I am increasingly reflecting on my experiences having lived with MS for over 20 years; the film “Hilary and Jackie” has reinforced my political and intellectual interest in not dismissing the material body/ mind experiences so lightly. Whilst I have presented/felt my own battles as political, both consciously and unconsciously, my internal self-doubt about inadequacy and incapacity, as the demylineation process claims a little more of the brain, is ever present.

Both intellectually and politically, we need to acknowledge that many disabled people are indeed challenged by acquired impairments. Impairments cannot be rectified by legislation, changes in community attitudes, or the provision of community services and accessible facilities. Some disabled people would even like to be cured of, or at least experience some respite from, their condition. I am not entirely sure I could ever wear a Proud-To-Be-Disabled T-shirt. Acknowledgement of impairment in no way lessens the importance of these struggles for rights and participation; however such acknowledgement does add to an understanding of the complexities of a disabled person’s identities. The politics of visibility in the disability movement has demanded positive images, and stressed the importance of disabled people taking “ordinary roles” in the movies. While important, this perspective may well have been a barrier to a more complex understanding of the diversity of the disability experience, and the implication of impairment.

Much of the film “Hilary and Jackie” explores the authenticity (of the MS experience) and of identity – starting with the sisters’ early rivalry in the music world, Jackie’s desire at times to give up the cello, Hilary’s statement that without her cello she (Jackie) would be nothing. An early interchange between Daniel and Jackie “Would you still love me if I couldn’t play? , to which Daniel responds “You wouldn’t be you if you couldn’t play”. Then later after the illness has made it impossible for Jackie to get her fingers around the strings: “I just want to play again. I’ll play the fucking triangle. I just want to play music again”. When the body is fractured into organs, fluids and scorned material, what happens to gender identity (Balsalmo, 1995: 216)? What does happen to Jackie’s identity as a woman, a wife, and a sister?

Balsamo has described the body as process; that is, as well as a way of knowing and marking the world, it is a process of knowing and marking the self (Balsalmo 1995:216). So what becomes of identity when the process is one of disintegration? I would argue that the impaired, material body cannot be factored out of disability theory. While we are indeed, more than our impairments (I do not wish to offer some notion of an essentialist impaired body), for some of us our impairments are a constant source of dismay and frustration. Moreover it is the impaired body that is medically, technologically and culturally disciplined. My fascination with “Hilary and Jackie” was precisely because the film explored the deepest emotions of living with a failing/ changing body and all that comes with it – envy, fury, loss of self esteem, and often a complete inability to know how to cope with deteriorating bodily functions. Jackie’s impairments are continually invoked through her sexual engagements, her incontinence, her inability to swallow and finally through her dying.

In turn this material impaired body is tied up in an intricate web of social relations. Impairment and disability (as oppression) are not exclusive. The socially constructed body remains an impaired entity, even when viewed solely from its social relations. The physiology of the impaired body needs to be located in a cultural context and for Jacqueline du Pre, the cultural context is about the finely tuned coordination required of a world class musician. People with advanced MS cannot be public performance classical musicians, certainly in any conventional understanding of the term.

So finally, there, indeed, on the silver screen, was a woman like me and Nancy Mairs, cello or no cello. Her powerful talent and spirit, her rage, her contempt, her bitterness towards her family, her struggle to live and her inevitable death from pneumonia engrossed me.

Disabled people clearly need to and do support one another in their encounters with their impaired selves as well as in political struggles. Disability is not just a question of social barriers – it has to do with all the relations the impaired body experiences. The life of Jacqueline du Pre had many tragic elements – the degeneration of her body confronted her continually with the loss of the powerful person she saw herself as being. Her life became a series of struggles in trying to retain her power – and as each element was eroded so her anger and frustration grew, and she sought some other way to affirm her self. She was not a victim – but a pro-active agent battling her impairments. These battles are as important for our understanding of disability as those more public and communal encounters with the social realities of disabling societies.

Helen Meekosha
Associate Professor
School of Social Work
University of New South Wales
Sydney Australia 2052



Anon (1999a) Requiems for Jackie, Time 153, (2), pp. 79.

Anon (1999b) Sister Act: Emily Watson soars in ‘Hilary and Jackie’, Newsweek Jan 11, , pp. 66.

Balsalmo, A. (1995) Forms of Technological Embodiment: Reading the Body in Contemporary Culture, in M. Featherstone and R. Burrows (Eds) Cyberspace/Cyberbodies/Cyberpunk: Cultures of Technological Embodiment, (London, Sage).

Bennett, D. (1998) Hilary and Jackie demonstrate musical talent, 22 November 1999, http://www.nctimes.com/preview/hold/flix/flix-hilaryandjackie.htm

Berardinelli, J. (1998) Hilary and Jackie, 1999, http://movie-reviews.colossus.net/movies/h/hilary.html

Clinch, D. (1999) Hilary and Jackie.(Review), New Statesman 128, (4419), pp. 39.

Kendrick, J. (1998) Hilary and Jackie, 22 November 1999, www.geocities.com/Hollywood/Set/6281/HilaryJackie.html

Mairs, N. (1996) Carnal Acts, (Boston, Beacon Press).

Ringel, E. (1999) Hilary’s story deeper than Jackie’s, 22 November 1999, http://www.sandiegoinsider.com/entertainment/movies/rev_hilaryandjackie.html

Shakespeare, T. (1999) Art and Lies? Representations of disability on film, in M. Corker and F. Sally (Eds) Disability Discourse, (Buckingham, Open University Press).