Taking charge of our own stories

A response to Me Before You

The past week has brought highs and lows in the disability world. On a high we saw the election of New Zealander Robert Martin to the United Nations Convention on the Rights of Disabled People CRPD committee, the first person with a learning disability to be elected to a UN committee ever.

Demonstrators outside the Embassy Theatre Wellington. The banner they are holding reads "Demand better stories #Survivethemovie #GetLaid #NotYourInspirationPorn. A male and female figure are silhouetted together in black. Photo by Zoë Deans

Demonstrators outside the Embassy Theatre Wellington. The banner they are holding reads “Demand better stories #Survivethemovie #GetLaid #NotYourInspirationPorn. A male and female figure are silhouetted together in black.
Photo by Zoë Deans

Things then took a turn downward with the opening of Me Before You, panned as a disability snuff movie by disabled people around the world. (The equally flimsy book of the same name was published in 2012.) Disabled people here joined the international outrage, protesting vigorously at cinemas around New Zealand.

Continuing the sickening downward trend, we heard about Ashley Peacock, and the ombudsman’s description of the autistic and learning-disabled man’s continued incarceration in “cruel, inhumane and degrading” conditions.

Three stories, two are real, one is anything but. Me Before You represents an ableist view of the disabled life. The real stories represent two extremes of disabled lives. Robert’s story is one of possibility, of a resilient and loving human spirit. The other real story is about an unresponsive and uncaring system reducing vulnerable people to a status of worthlessness.

Out of sight out of mind

The “out of sight out of mind” mentality is still alive and well in New Zealand. A while ago I visited the old Porirua Asylum museum. It was a sobering experience. I bought the published history of the hospital and related services and looked for the patients’ voices. There were none. In great sadness I mourned the nameless and forgotten people who were “put away”, unwanted objects in institutions which were supposed to care for them, often buried in unmarked graves and written out of history.

We have heard their voices only occasionally, through the wonderful early novels of Janet Frame, despite the revisionism that seeks to deny or at least minimise her searing experience of being labelled and treated as mentally ill. Mary O’Hagan’s recent book Madness Made Me is an excellent and constructive first-hand account of more modern mental health services, and Robert’s story, Becoming a Person is a powerful no-holds-barred life experience of abuse and systemic discrimination, but one that seizes with both hands the essential life-affirming humanity we all share, ultimately hopeful. Stephanie de Montalk’s exploration of pain in How Does it Hurt? would probably never have been published, despite its quality, if she were not already an established and highly respected author.

Such significant and excellent accounts are rare. Even books of academic interest are hard to come by in New Zealand and are prohibitively expensive in hard copy and as e-books. With the exception of Attitude TV, and one or two independent film makers and committed individuals elsewhere, the popular media and, importantly, our significant cultural institutions, are controlled and staffed by non-disabled people, and the stories they tell reflect that perspective

Growing up in a disability vacuum

Most disabled people in New Zealand still grow up seeing little realistic reflection of our own lives in the culture around us. I certainly didn’t. While my growing up was a while ago now, I don’t see much change. There have been one or two worthy attempts to introduce disabled characters into children’s books, with limited success. Even David Hill’s quality See Ya Simon is still from a non-disabled perspective, and the disabled character has to die as an essential part of the plot.

Mainstreaming disabled children and young people in the education system has had the unintended result of loss of community and cultural ties for some groups of disabled students.

Invisible stories

Story, in whatever form, is an important means of helping growing people find their places in the world. Growing up essentially without stories in one important aspect of your being is deprivation of an essential part of your own and the related human experience. It leads to a sense of disconnection, and of always being an outsider, whose concerns are marginal to those of everyone else.

Access is not enough

The absence of disabled voices telling our own stories on our own terms is surely the reason for the survival of the “fate worse than death” fearful view of disability. This is why we demonstrated for better, more real stories. The experience of disability is so much richer than the common bleak death-filled view. Disability is a prevalent, rich and universal thread in the human story. It is a thread to be explored, even celebrated. Our cultural institutions, including publishers, libraries, museums, galleries, theatres and others in the arts establishment must understand that access, while absolutely critical and necessary is not enough. We have to tell our own stories in our own voices, in our own ways.

A dedicated “cultural space”

Making space for us is key. We want a slice of the action and the resources. We want our voices to be valued and heard. We don’t want a ghetto, the outsider arts. We want to use our stories to effect change, to shine a light on dark places and forgotten corners. We want to tell our stories so we too belong. We will no longer stand for being incidental plot devices in the drama of others. Movies like Me Before You would have smaller and more critical audiences if our voices were part of a nuanced cultural mix.

A dedicated disability “cultural space” is necessary. A “cultural space” doesn’t necessarily have to be physical and, at its best it would be a broad, inclusive and innovative space for disabled people to explore disability culture/s while forging strong connection and challenging the broader cultural context. Such a space might be a physical or virtual online space, or both. The critical element would be disability-owned and led. This space and place could be the incubator for disability-led practice in a range of media to develop storytelling, sharing the stories disabled people know are waiting to be told.

We want our work to be taken seriously, to be no more or less therapeutic than any other arts practitioner’s. We want to shine light on disability history and disabled lives so that situations like Ashley’s are unthinkable because service providers and the public know better, and Robert’s human rights passion and work won’t be thwarted.

Other minority groups have cultural spaces. Places of celebration and pride and identity. What would a disability “cultural space” be like? If we could design them, where would they be? What would they be filled with?

Me before you is an abject example of the need for changing cultural values, for real stories, providing a quality balance to the pity parties and inspiration porn. It’s time for us, nearly a quarter of the population, to take charge of our own stories.

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Filed under Disability Issues, Disability Rights, Inclusion, Media, The Arts, Web Accessibility

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