Tag: disability rights

Three books on disability, family and rights

Katharine Quarmby1 Comment

In this post I’m going to briefly review three books that look at family life and disability. I’ve grouped these three together because disability affects individuals but also determine and impact life in a family. It’s easy to feel sometimes that the voices of those who live with people with a disabilty become segregated from disabled people themsleves, meaning that life in all its richness isn’t told in the round but as a series of separate stories. 

I feel that our life as a family has been changed and enriched by all our family members – Great Uncle Henri, a French war veteran who was blinded in the First World War and ran an association of blind former soldiers, another French family member who had a spinal condition and my lovely great aunt Cecile, who had schizophrenia. Nearer to home my granddad was deaf, and in more recent generations family members are autistic. I don’t want to romanticise our experience of disability though – it’s not easy, dealing with stigma, poor social support and the impact of particular conditions on family life. One that has shaped my immediate family life most, depression, remains particularly poorly understood.

So I”ve been itching to look at these three books that all take a clear sighted look at disability, family life and the gaze of outside, which can other and stigmatise, making life harder than it needs to be.

Jan Grue’s memoir, I Live a Life Like Yours (Pushkin Press, 2021) is a beautifullly written memoir of Grue’s life as a journey through disability, translated by Becky Crook from the Norwegian. Grue, a Professor of Qualitative Research at the University of Oslo, draws on art, fiction and the lives of other disabled pioneers, such as the writer Mark O’Brien, to explore themes including family life, the body and relationships. It is a thoughtful meditation on how to be fully human with a disability when the external gaze is clinical or stigmatising – and how relationships with others, including his wife and son, restore a sense of subjectivity, rather than being objectified – and even judged. Grue makes the point that his life is similar to others in his family, but is experienced as different in a way that is often uncomfortable.

“I follow a timeline that others might have followed. I live in the same city where I grew up. I am an academic, a child of academics. I live a life like theirs. I am married and have a child with Ida, who is a woman who writers…These are the threads that hold my life together. This is the fabric.”

But as Grue says, when people meet him who knew him as a child, there is a sense of surprise, because he has “surpassed expectations”, prognoses. There is another sense too, that to live a life like everyone else’s, there is struggle – against the gaze, against the threat of institutionalisation, so that Grue and other disabled people are accepted, just as they are in a world of barriers where everything must be planned. “It is hard to be human beneath the institutional gaze.” Grue’s exploration of O’Brien’s own exploration of the troubled landscape of sex surrogacy and competing rights is particularly sensitive. 

This is an outstanding book in which Grue’s experience becomes a fulcrum around which he explores a disabled life lived in connection with other people, both those who objectify and those who support and are supported by him being in the world, navigating it and peeling away the shame and stigma that still cling to disability like a burr on wool.

In The Cracks that Let the Light In, by Jessica Moxham (Octopus, 2021), the writer explores the subtitle  – What I learned from my Disabled Son. Moxham explores how she and her husband, James, have raised their three children whilst supporting their eldest child, Ben, who uses a wheelchair and needs assistance to communicate. Life in a family with a disabled child is one where you take on the state in all its guises. Whether you like it or not you become an advocate, a campaigner for equal rights, and even pushing to raise a family becomes a political act. Life isn’t what you imagine, and Moxham feels her way through some of the thoughts that are often linked with life with a disabled child – that there is grief, even though your child is alive, for instance. Like Rue, she explores the idea that the young disabled child’s body should be put through exercises to change it, when she sees how her second son rolls and moves. “No matter how much time I had spent helping Ben roll or sit, he would not have been able to overcome the essentiall wobbliness and involuntary movement of his muscles. I am relieved rather than sad…Ben’s impairments cannot be taken away.” One vivid passage explores the fact that Ben’s disability means that he dribbles. A child at her son’s nursery calls it disgusting. There were surgical options and other interventions such as Botox. “All of these would involve recovery periods, side effects, disruption. We decided we wouldn’t intervene, but had he noticed the girl saying he was disgusting? I didn’t know whether we should reduce his dribbling to make him more acceptable to strangers…My aim is for our children to grow up thinking they are enough…I don’t want him to feel like he takes up more space than he is worth, or to force him to be a certain way because it’s perceived as more palatable.”

Moxham’s clear sense that some bodies work differently and that’s OK is nuanced, but challenging in a good way. She says she has got bolder over the years – but is also just getting on with life. “Sometimes I’m considering the careful use of particular words and tone, sometimes I’m policing other people’s language and sometimes I’m just shouting “Bum!” at my kids. 

There is such a clear sense of family life going on, accepting each child’s idiosyncrasies. “We have pitched our tents on the undulating landscape of uncertainty and we’re making the most of it…we are all doing our best.”

Lastly, I wanted to mention Somebody Up There Likes Me: Living with the Threat of Huntington’s Disease (Amazon, 2021), written by Melanie Pearson about her family’s experience of being affected by the condition. Her mother and brother both had the condition, and she supported her brother through the condition. Pearson’s book is an exploration of how ignorant so many medical professionals are, and how poor the support is for those with the condition. Despite the hardship and bereavement, Pearson is very clear that this isn’t a misery memoir, but more of a road map through a condition that is hugely misunderstood, leaving families to support their members with it and the difficulty of choosing whether or not to have a test for it, knowing what your future might be. 

Some thoughts on human rights reporting and its discontents

Katharine QuarmbyLeave a comment

This is a longer version of the blog I wrote for the Oxford Human Rights Hub, which you can see here, on the hierarchy of human rights and human rights reporting: 

Is There a Hierarchy of Human Rights and Human Rights Reporting?

This followed on from my talk for Wadham College, Oxford University, on human rights journalism generally, and how it is evolving in the age of the Internet. 

http://www.wadham.ox.ac.uk/news/2014/march/an-uncertain-future-for-human-rights-reporting

Whilst I applaud so much of the human rights reporting that takes place in the world, it paints on a large canvas. We think of it being about combating the death penalty, pointing out human rights violations in combat zones and protecting the rights of asylum seekers – all noble aims that I fully support. But when human rights journalism – and human rights – inconvenience us or affect our property rights, things become a little more uncomfortable. So here’s my thoughts on that – comments please. 

Is there a hierarchy of human rights and human rights reporting?

Looking back over my many years of writing and making films about human rights issues, I’m struck by which stories and groups get the most publicity and which stories are more difficult to fund, write and make. I believe that just as there is a hierarchy of rights, as discussed by human rights scholars for many decades, there is also a hierarchy of human rights reporting.

 

War reporting and the human rights violations that occur in conflict zones, are seen as what one might call ‘classic’ human rights journalism. It’s dangerous work. Last year, the International Federation of Journalists estimated that over 100 journalists and media workers were directly killed because of their work – and around half of that number were engaged in human rights reporting.

 

http://www.ifj.org/en/articles/108-journalists-killed-in-2013-to-test-un-day-to-end-impunity-francais-espanol

 

I was one of the many journalists who travelled to Rwanda after the genocide that killed at least 800,000 Tutsis and moderate Hutus in 1994. (It’s noteworthy that the killing of the Pygmy people, the Twa, was far less covered.) I was there in 1997, to record the aftermath, with BBC Panorama and the film we made, Valentina’s Story, produced by Mike Robinson and reported by Fergal Keane, is a classic piece of human rights reporting. It drew attention to the genocide through the eyes of one child survivor. In 1999 I went back with Fergal, as a BBC Newsnight producer, to make two more classic human rights films, gathering evidence on rights violations during the genocide that could be forwarded to the Arusha War Crimes Tribunal. This kind of journalism is done today by dedicated correspondents throughout the world – from CNN to Al Jazeera, to the BBC and to PBS, in war and conflict zones as various as the Central Africa Republic, Syria and many areas of the Middle East. It’s crucial that such journalism continues.

 

I have moved on to smaller scale, intimate human rights journalism that I also consider important, but which is far less well funded and at times controversial. I think this is because the very rights of those under fire are seen as questionable and not mainstream – even by those inside the human rights field. This means that the funding for reporting on them, and the importance ascribed to them is far less – what one might call inconvenient and unpopular human rights journalism. I think this is a pity.

 

In 2012 I looked at how human rights organisations wrote and campaigned on disability rights for Amnesty International’s magazine. I found that few saw them as central to their work – in fact, in the drop-down menu of rights on the Amnesty International’s website, disability was not mentioned as a category – unlike childrens’ rights, gay and lesbian rights, women’s rights and refugee rights. Happily, at the annual general meeting last year, it was overwhelmingly decided to remedy this. Disabled peoples’ rights are still seen as segregated from other rights – as if human rights groups mirror some of the divisions between disabled people and non-disabled people in Britain today. During the Leveson Inquiry, similarly, despite a campaign by disabled people and their organisations, none were called to give oral evidence on how they were treated in the media, something I and many others wrote and campaigned about at the time.

http://www.theguardian.com/commentisfree/2012/may/08/leveson-willful-blindness-disabled-people

 

 Leveson did, however, take oral evidence from women’s rights organizations, transgender organizations, and refugee organisations – something I completely agreed with – but I did not agree with the lack of oral evidence from disabled peoples’ organisations. Eventually, some campaigners (I was one of them) were invited to give written evidence, but it is disappointing that this division was so evident in such a key inquiry, when the stereotyping of disabled people by certain sections of the media, especially around benefit cuts, is clearly evidenced to have caused a worsening of public attitudes towards them.

 

http://www.inclusionlondon.co.uk/bad-news-for-disabled-people-report-reveals-extent-of-media-misrepresentation

 

This lack of understanding of the discrimination faced by disabled people meant that it took many years for me and others to get the real and pressing issue of disability hate crime recognized. The key intervention of Lord Ken Macdonald, then the Director of Public Prosecutions, who called disability hate crime a ‘scar on the conscience’ of the criminal justice system was one of the reasons why that change happened – but it was a long time coming, and human rights organisations are still playing catch-up when it comes to integrating disability rights into a wider rights agenda.

 

http://news.bbc.co.uk/1/hi/uk/7655244.stm

 

Disability rights can be seen as inconvenient to the general public (think of wheelchair spaces on buses, and how they become contested spaces with parents with pushchairs, for example) and this attitude is mirrored in journalism itself.

 

Lastly, we come on to unpopular human rights journalism – and this is where I would place the rights of Britain’s nomads, which come into conflict with another highly cherished set of British rights – property rights. Essentially the rights of Britain’s nomads to enjoy a life free from discrimination, to enjoy the right to family life, the right to education, the right to vote, the right to a decent standard of living and housing come into conflict with British planning law. This was played out in Court 76 of the High Court on October 12, 2011, as I reported for the Economist, when the Dale Farm Irish Traveller residents lost a crucial legal battle against their eviction.  I wrote at the time: “Dale Farm has become a symbol of an increasingly bitter dispute about the rights of Gypsies and Travellers, around a fifth of whom have nowhere legal to live. Basildon council argues that it is simply enforcing planning law, by which all citizens must abide. This was echoed by Mr Justice Ouseley. He said that there must be “public respect for and confidence in” planning law, and that although Basildon council had not identified alternative pitches where the travellers could live, those deemed homeless had been offered “bricks and mortar” accommodation. The decision by Dale Farm residents to decline such housing, due to their “cultural aversion” to it, he said, was their own responsibility. He pointed out that the Travellers were breaching the law by remaining on site.”

 

http://www.economist.com/blogs/blighty/2011/10/dale-farm

 

The eviction of Dale Farm left some 86 families without a secure home, and cost Basildon Council millions of pounds. Many of the families still live roadside, in poor conditions. Basildon was right in legal terms, but who has won? Children are no longer in school, mothers are on anti-depressants, families do not have running water and local tax-payers are footing an enormous bill. There has to be a better way of honouring property rights than creating a situation in which the human rights of these particular Traveller families are so completely ignored, three years on. But such views are unpopular, and the rights of Britain’s nomads are questioned, constantly. Those who seek to defend their rights find it hard to get commissions. This is unpopular human rights journalism – but it is important, all the same.

 

I am grateful for all the journalism I’ve been able to do, over so many years – from Rwanda to Dale Farm, to small-scale human rights stories for Private Eye. That’s our job and it’s worthwhile – at all its levels: popular, unpopular, inconvenient and small scale. But the hierarchy does make me uncomfortable.