on the Global Disability Summit

Last month I attended the Global Disability summit.  Here is

an explanation of the summit and the International Disability Alliance involvement
Somebody asked me for a summary of the summit so I complied the news links below for her. I thought I might as well put them here.
I must say that the links below are given very much from a UK perspective and reactions.
An article on grassroots activists view on the summit
The first of the reports, in November 2016, found the government had committed “grave and systematic violations” of the UN Convention on the Rights of Persons with Disabilities through its policies on independent living, social security and employment.

The second, last autumn, assessed the government’s overall record on implementing the convention, produced an unprecedented number of recommendations for improvements, and led the committee’s chair to tell the UK government that its cuts to disabled people’s support had caused “a human catastrophe”.

Ellen Clifford, who helped organise DPAC’s International Deaf and Disabled People’s Solidarity Summit, which took place two days before the government’s summit (see separate stories), had said that holding the Global Disability Summit so soon after the UN report was like the UK government “sticking two fingers up to the UN”.

But she said she welcomed anything positive that came out of the summit and was “particularly in favour of deaf and disabled people and our organisations making direct links internationally to support each other in our shared struggles.”

She said this could only be done “from the grassroots up”, which was why DPAC had hosted its own summit.

Clifford said that the Department for International Development, which had co-hosted the summit, had said DPAC activists could come inside the summit but would only be allowed in “if you don’t mention the UK government”.

DPAC rejected the invitation, and instead, the International Disability Alliance (IDA), an alliance of disabled people’s organisations which co-hosted the summit, supported DPAC in ensuring that its leaflets were distributed inside the summit.

The leaflets told delegates that the UK government had shown “contempt” for disabled people and the UN convention, had driven its “disabled citizens into degrading and inhumane conditions” and that it appeared to be “attempting to use this event to whitewash its appalling record on disability at home”.

an article on government minister’s response

In 2016, the UN’s CRPD told the UK government that it was guilty of “grave and systematic violations” of disabled people’s rights through its policies on independent living, social security and employment.

There has been anger and disbelief that the UK was asking other countries at the summit to sign up to a new charter that calls for governments to be held to account for their progress in implementing the convention, when it had not accepted the CRPD recommendations last September, or in 2016.

Last year, DWP said it was “disappointed” that the UN report “fails to recognise all the progress we’ve made to empower disabled people in all aspects of their lives”.

And the previous year, DWP said that it “strongly disagrees” with CRPD’s conclusions that it had caused “grave and systematic violations” of disabled people’s rights and that the CRPD report “presents an inaccurate picture of life for disabled people in the UK”.

Mordaunt insisted this week that the government had not dismissed last year’s report on the overall implementation of the convention in the UK, and that Newton was now “working through” the recommendations, with announcements expected nest month.

But when asked four times whether she accepted the 2016 “grave and systematic violations” report, Mordaunt declined to do so.

She eventually said that the government had “issues with some of the aspects of the UN process”.

She said: “We think that we have been in some instances unfairly dealt with, but we will continue to engage in that process and I am confident that you will see progress.”

article on opposition party’s reaction

https://www.disabilitynewsservice.com/global-disability-summit-mcdonnell-says-government-hosting-summit-is-height-of-hypocrisy/

Labour’s shadow chancellor has described the UK government’s decision to co-host a Global Disability Summit – less than a year after its record on disability rights was dismantled by the United Nations – as “the height of hypocrisy”.

The result, last September, was “an outright condemnation of the role that the government has played”.

He added: “It was the height of hypocrisy then for them to host this event.”

He said the summit could have been so much more successful if there had been an “honest discussion about what’s happened to disabled people across the globe but also learning the lessons of what’s gone wrong in this country, and the lessons of what’s gone wrong are that disabled people have born the brunt of austerity”.

article from a leading disabled journalist, Frances Ryan, in a national newspaper

https://www.theguardian.com/commentisfree/2018/jul/30/britain-disabled-people-handmaids-tale-conservatives-global-disability-summit

The first ever Global Disability Summit took place in London last week, with more than 700 delegates from governments, charities and disability organisations around the world.

In a speech last year to herald the event, Penny Mordaunt – the international development secretary and former minister for disabled people – said the summit would showcase Britain’s “commitment to transform the lives of people living with disabilities”. Theresa May was similarly enthusiastic, pledging the summit would be dedicated to “transforming the lives” of disabled people, and showing how “committed” Britain is to ending disability discrimination.

I can’t help but be reminded of a scene in The Handmaid’s Tale in which the rulers of Gilead put on a grand show to impress visiting international delegates; with the bruised handmaids kept hidden, they are free to present their nation’s treatment of women as something to aspire to.

reported speech from Minister for Women and Equalities

https://www.gov.uk/government/speeches/penny-mordaunt-closing-speech-at-the-global-disability-summit

As Minister for Women and Equalities as well, I am particularly conscious of the double discrimination faced by women and girls with disabilities – marginalised for their gender as well as disability. That’s why DFID is committed to amplifying the voices of women and girls with disabilities.

Through the Girls Education Challenge Programme (GEC), UK Aid has supported over 46,000 girls with disabilities to access education. Through the programme’s new Leave No One Behind strand we will back another 15 projects and support 10,000 girls with disabilities.

We are also providing additional funding to the UN Trust Fund to End Violence Against Women to prevent and respond to violence against women and girls with disabilities.

I am wondering if she also includes disabled women in the UK

.

Not all UK DPOs disagreed with the UK government

A national disabled people’s organisation is facing accusations that it “betrayed” the UK disability movement after its deputy chief executive failed to condemn the government’s record on rights at a major international gathering of disabled people.

Sue Bott was sharing the stage with a senior government civil servant less than a year after the chair of the UN’s committee on the rights of persons with disabilities (CRPD) said the UK government’s cuts to disabled people’s support had caused “a human catastrophe”.

They were appearing at the Civil Society Forum, an event headed by the International Disability Alliance and intended to “amplify” the voice of disabled people the day before the UK government’s sister event, the Global Disability Forum, was held in the same venue on the Olympic Park in east London.

Bott (second from left) was asked on Monday by the UN’s special rapporteur on the rights of disabled people, Catalina Aguilar, what she would like to ask the UK government to do.

But in front of an audience containing disabled people from organisations across the global south and the UK, Bott failed to criticise the UK government.

Instead, she laughed, and said DR UK wanted to “collaborate” and “learn from disabled people around the world”.

if I may put in a quote by myself….

Eleanor Lisney, a leading disabled activist and member of the Reclaiming Our Futures Alliance network of disabled people and their organisations, said she was “astounded” by Bott’s speech.

She said: “Given that it was such a strong examination by the CRPD she didn’t mention it at all.

“It is not something that is hearsay. This is the UN.”

She said that one of the UN’s key conclusions last year was that one of the strongest elements in the UK was its disabled activists and disabled people’s organisations (DPOs).

Lisney said: “She didn’t mention that, she didn’t give credit to DPOs in her own country, she said she wants to learn from the countries the UK government is giving help to.

“She’s not there for DR UK, she’s there for DPOs in the UK.

“It’s a betrayal, that’s what I call it.”

GDS

taken at the protest outside the summit

A new year …2018

I was going to make new year resolutions but I decided against it – knowing that I break them every year.

Consciously, I have been submerging or trying to submerge myself in Chinese – preferably in Cantonese (my mother tongue) but mostly Mandarin putonghua because it is more dominant and easier to access through the internet /films/ serials/ music.

Part of my impairmant seems to affect my memory, my language skills seem to be going…it s scary in part and iritating too, especially when family picks on me when I forget people and words – or even grammar mistakes (never my strong point anyway). I think it is disableism of a form but I find it difficult to combat that type of gaslighting (yes I do think it is a form of gaslighting albeit not with actual hurtful intent). Having a physical impairment for most of my life, I have yet to come to terms with hidden impairments – how does one explain them?

As an experiment, I am trying out Gestalt counselling. I am learning more about counselling and therapy  – and self awareness. Hope to have more to report on later in the year.

I will leave with the theme song from The Game of Hunting with Hu Ge – having just finished watching the series about head hunting in China.

Slow to feminism (4)

This past weekend I was with other disabled women at the Sisters of Frida peer led facilitating course. Wonderfully lead by Nim Ralph and Lani Parker, we shared experiences, ideas and mentioned skills we can use for the project. It was an intense experience.

That weekend encapsulates a good deal of my day to day activism, my learning, my growing (and continuous growth) appreciation of sisterhood and feminism here in the UK. I cannot say I did not understand sisterhood when I went to an all girl school growing up in Malaysia. I have friends who have stayed like sisters to me from age seven when I started at primary school. But that type of communal childhood sisterhood also means your worldly experience is dependent on that – for me, with an East Asian perspective. I am not saying there are no East Asian feminists but that I was not exposed to those. I did not know about socialism /communism in China, I knew more about kings and queens in England. I did study Malaysian history but the only mention of a Chinese woman was Hang Li Po, supposedly a princess given to Sultan Mansur Shah in Melaka (Malacca) in the 15th century. No mention of any other woman of any other ethnicity. It might be my faulty memory but after racking my brains, I cannot, for the life of me, remember any. We did not study about the suffragettes…but I think we did have mention of the Dowager Empress (and her power). However my history lessons were supplemented by Chinese martial arts movies where women were just as strong and were not just bimbos to be rescued (and of course Chinese romance films as well where women were often victims, I also had a steady diet of Cantonese opera where I would be caught in the headiness of idolising female opera singers who play male roles. I never questioned the culture where genders can be changed in opera ) My best loved films were Come Drink with Me and A Touch of Zen  

woman in costume with sword and hat.
Cheng Pei Pei as swordswoman in film, ‘Come Drink with me’

Why do I mention films? There should be a note of explanation here, my education was entirely in English (the impact of being part of the British empire, even though Malaysia was independent by then, all education was still colonial). I was not in a Chinese school, I was mainly illiterate in my mother tongue. I imbibed Chinese culture through watching films, the radio and what was gleaned from my parents and relatives. Notably a blinkered view of the richness that is Chinese culture. I read Chinese poetry translated in English and then try to fit it with my limited Chinese vocabulary. Ironically it helps me to understand English people who tell me they dont ‘get’ Shakespeare. I read Jane Austen, the Bronte sisters and comics with Wonder Women but there were none like my Chinese kungfu heroines who could fight as good as the men and win even.

Feminism was never part of my vocabulary or consciousness when I was growing up or even as a young adult at university. Are young women these days more aware? are we not all wrapped up with what the media choose to bombard them us on billboards, in magazines, in tabloids : how we should look and objectified. And young women are given how to behave and constrained by how they should comply with demands from male school mates so that they are on some kind of acceptance by their peers and included.

I was watching Korean series (as one does) Strong Woman Do Boon So     I wondered at the story line – here is a young woman seen to have incredible strength but her dreams were still centred on a young man who did not reciprocate her love and her boss who is a rich twat who tells her what to do (even though he pays her well to be his bodyguard ).  I found out that in South Korea, it is reported that there is an epic battle between feminism and deep seated misogyny.

I mention all these cultural type references because it is partly what motivates me to be the activist /campaigner I am today. I want to be part of the process of informing other disabled women /of colour about choices and alternatives. We do not have to conform to stereotypes – either those of our own communities with strong patriachal overtones or herein the west where it is not that much different except more nuanced perhaps – in that feminists can be judgmental and insistent that we conform to western ideals of feminism. I hope that because I have my experiences in either world, I can facilitate other women in their search. It is not an easy path when you juggle cultures, you can end up by being feeling alienated from all.

Having said that, I also understand the different journeys – just as I understand, in the different context – that it can take time to take in disability politics. I was slow to feminism, all my young life, I have been lead to hanker for a ‘normal’ life – to be a real woman, desired and be able to fulfil the feminine ideal. It is not easy to get away from the yoke of Confucianism, ironically my first lesson of feminism came from a Catholic nun from California when I was at a retreat in Dublin.

 

Privileges and Politics (2)

this is part of a set of blogs in preparation for a chapter in a journal which asked me to write  ” on your work in relation to your personal activism and advocacy with the onset of austerity, and the intersectional tensions as a disabled women involved with a diverse set of communities. In particular we thought you may want to contribute a chapter about your personal reflections, that rigorously capture the new and emerging issues for disability activism” …..

I think of myself as privileged because I knew my parents loved me unconditionally and my siblings are pretty good to me too. My parents were immigrants in Malaysia, they were barely out of their teens when I was born and 3 years later they had a second child and I was stricken with polio. They were very poor and I needed medical care, there was no NHS there and my father worked incredibly hard to afford the medical treatment I needed. My parent’s friends advised them to give me away to an orphanage and try again for other children but my parents did not, they hung on to me.

People at school marveled at my mother’s devotion to me, she carried me everywhere until I got too heavy. She fought for me to get into the right classes even if they were upstairs. She spent hours tirelessly teaching me to cycle on a little tricycle. I think my primary school bent over backwards to accommodate me as much as they could.

black and white photo of a solemn looking child in a dress, cross legged, seated on a round cane type chair. She has an anklet on my foot.
me just before my third birthday

So why do I say I was privileged being born of poor parents, in a developing country which was just gaining independence from England. Maybe I should just say I was lucky. I was priviledged because I had great parents – who knew not much about parenting who did not speak English (English as the colonial language was a perequisite for getting a good job in the civil service). I think having had a poor childhood made me realise that just how lucky I was.

Now when I said that once, a friend asked me quizically if I was having a Pollyanna moment. I could have been given away to an orphanage and left in a residential home in Malaysia where disabled children were given to make handicrafts to eke out an existence. I once visited such a home ran by a friend of my mum’s in an outskirt of Kuala Lumpur.  I do not know what kind of life they lead, I did not want to know. I was too keen on distancing myself from those I considered unfortunate.. My parents had been saving for my education – they saw that I needed it most and when the time came, they send me to England to study.

newspaper headlines ''Crisis laws after 39 die in riots' from the Strait Times'
‘Crisis laws after 39 die in riots’ from the Strait Times Source: http://says.com/my/news/44-years-since-may-13-1969-have-malaysia-recovered

Now in that backdrop, I also grew up in the aftermath of the May13th racial riots in 1969. I remember being given strict instructions not to put my head out of the window or I might be shot.

Not so long after that boat people also arrived from Vietnam. I think it gave my father a disquiet – even if he had escaped from Communist China and he had made a good living as a citizen in Malaysia, he did not feel safe for his children. He saw the discrimination against ethnic minorities, I remember him telling me that having an English education would give us an advantage above having had a university education in the Malaysian system, if ever we should get kicked out of the country.

With hindsight, I can see it gave me my first lesson in politics – my father was deeply Confucian, he would not agree with engagement with any form of politics. But I understood the uncertainty of place and identity. It is in no way comparable to the plight of modern day refugees but I understand the fear and the uncertainty.

But my education of politics and the importance of social justice came from the Catholic church and my mentors who were deeply spiritual people. They taught me about liberation theology and inculturation. I went to a convent school. But no, my convent school did not teach me about liberation theology – where I started realising about social justice – but it gave me access to a different way of thinking and inculturation taught me that I can embrace other faiths without abandoning my own heritage.

I was very fortunate to have as godparents, Sr Teresia Mowe and Br John D’Cruz, who understood a curious young disabled girl searching love and understanding – as much as their own busy schedules allowed. If you watch the video  and see John’s work with slow learners, you will get the idea how open he is and his acceptance of people as they are. In my youth he was the one person who gave me confidence and taught me self acceptance and about relationships. I know over here, we hear much of the harm that the Catholic church but I learnt a path away from materialism and capitalism there, a thirst for learning and respect for spirituality. I am indebted to him for his brand of nurturing love and acceptance which was not at all judgmental even when I grew away from the faith.

One other person who had huge influence over my formative youth was my parish priest, Fr Surmon. He helped me with my homework and had an extensive library ( my hometown had no public library). He gave me books to read by Simone Weil and Teilhard de Chardin! So my reading consisted of Wordsworth, Jane Austin, Chinua Achebe, (school text books)  Mills and Boon, Georgette Heyer, (what was available in the bookshops)  and French philosophers (way over my head, my worst subject as an undergrad was philosophy!)

 

see previous blog

next blog

Start at the beginning (1)

this is the start of blogs in preparation for a chapter in a journal which asked me to write  ” on your work in relation to your personal activism and advocacy with the onset of austerity, and the intersectional tensions as a disabled women involved with a diverse set of communities. In particular we thought you may want to contribute a chapter about your personal reflections, that rigorously capture the new and emerging issues for disability activism” …..

So I am taking the opportunity to write a few notes on my journey.

Chinese girl with mid length hair looking at the camera, with glasses above her head
As a 16/17 year old teenager

When I was a teenager, I had some Swiss penpals who came to visit me in Malaysia. I was very excited, these were my first contacts with white people (apart from religious clergy associated with my school). They came for two weeks bearing gifts of Swiss pen knives and an embroidered blouse. In these days of social media, it is difficult to imagine a world where we wait for letters to arrive in the post, where handwriting was still important.

I took them to a few places but in Kuala Lumpur, they insisted on visiting a palm reader in a fancy hotel. I refused to pay the fee but he took my palm and was very interested – he said that I would travel the world and live in foreign lands. It was clear to the teenager in me that this was a real scam. I thought how could that be when I was disabled and not able to hobble far. I did not really bother to keep in touch with those penpals after a while, I did not expect to reciprocate the visit to Swizerland.

I went to a mainstream school, there were no special schools in Malaysia and I never met another disabled child when I was growing up. My schoolmates accepted me and they included me when they could but they never asked questions when I was excluded either. One of my classmates was very kind to me and acted as a sort of helper, she got my bag and bought me lunch from the canteen. We went to my house together because she had to wait for the bus, I m not clear why. I was self absorbed like any other teenager. I was not a particularly nice child, I was spoilt by my wonderful parents- even as I felt like an outsider oftentimes when I could not join and perform in the class band, choir and be on stage or do sport, I raged against what seemed like an injustice to me and only me.

black and white photo of girl on bike with glasses. shes wering a dress.
I had a Ragleigh bike with stabilisers

My parents were reasonably well off and it was not a big place, my hometown. The town people knew me as I used to cycle around on a girl’s Ragleigh bike with stabilisers. That bike gave me independence – I valued the mobility independence far more than  my non disabled friends who could walk. That bicycle was a precursor of the wheelchair I got from the NHS when I started university as an undergrad at Kent University in the UK.

My bike made it possible to visit my friends and be part of their families – Malaysia is multicultural. I celebrated all the festivals and it helped me understand cultural differences by being embedded in it. The muzzein call to prayer in the morning, church bells on Sundays, firecrackers for Chinese New Year, and all types of processions ( not found in other parts of the world where I have lived) like for Thaipusam.

This part of my youth is so important in the development and passion for intersectionality and the importance of understanding that no oppression is in isolation of the politics and the context of our community and society. I say this given the context of the Malaysian melange of four different ethnicities: Malay, Chinese, Indian and other.1 It is not a question of race as in white against people of colour, it is the post colonial context and who held the political power at the time. We had also to look at the make up and influence of religion as well.

next post


ref The Population of Malaysia 1974 http://www.cicred.org/Eng/Publications/pdf/c-c34.pdf

At the Spirit of Women Changemakers conference

4 women speakers sitting at a table, one East Asian next to 2 white women and then a black woman at the end.
photo by @Belinda_Phipps

I was invited to speak the opening session at the Fawcett Society’s Spirit of Women Changemakers conference on 12 November.This is the speech I gave.

First of all, I have to say I’m not at all comfortable in talking  about being a changemaker…for me, my journey as a campaigner is a long process helped and shaped by many other people along the way.

As a disabled activist,I started my journey in the US I was inspired by the grassroot activists in Austin, Texas, who often frequent the Capitol there. I came back to the UK to work at Coventry University but very quickly realised that I was more needed as a disability campaigner than a database/ relationship manager. In 2010, I was one of the co-founders of DPAC and went on my first march on 3rd Oct to protest against the coalition government’s spending review. We were marching with trade unions as well then and I found myself speaking /sharing on platforms with leaders of trade unions as well as other campaigners. I remember saying on an interview with the Guardian that we were going back to something like the Victorian age and people said I was scaremongering then.

At about the same time, I was invited to speak on violence against disabled women by the Million Women March at Trafalgar Square with my great friend, Michelle Daley. We both realised that there was a huge gap where disabled women was concerned on VAW and domestic violence,  disabled women are twice more likely to be victims. Disabled people Organisations are gender neutral and women organisations do not deal with disability generally. Disabled women are marginalised and their issues are essentially invisible. We get a double dose of discrimination and stereotyping ..and triple dose as disabled women of colour.  So we founded Sisters of Frida with other disabled women, we had a meeting over tea near Euston station . But we took a long time deciding on a name. I suggested Sisters of Frida because of the inspiration of Frida Kahlo who was an incredible artist whose work featured her pain and disability but she was more than that, she was creative, she was an activist, a feminist, a lover, bisexual vibrant woman of colour. We wanted a sisterhood that encompass all that, intersectional and inclusive.

So I don’t think I set myself off to be a campaigner or activist or a change maker. In 2012, I was a torchbearer, I think I see myself more in that role, carrying on where previous campaigners have set a trail.  I often say I am a coordinator, I coordinate people who have the skills and set venues and do a lot of the back end work. It means a lot of networking and going to a lot of meetings  – for example SOF had 4 workshops on disability and sexuality recently which were brilliant, we had a pilot event first and mostly disabled women just told us what they needed was a safe space to talk to other disabled women. No other such space exist. So we needed some funding to pay for the venue, access stuff like BSL and I pitched it to the RSA after a feminist funder turned us down and luckily the RSA  agreed. For me, the great motivator is being able to fill that type of gap. And that had a great intersectionality element in it because it was disabled women of faith, LGBT and women of colour, we shared our experiences and stories.

It might seem trivial to focus on this among all the welfare reform changes that is happening but disabled women are seen to be asexual and there are a lot of mis understandings and that is a fundamental sense of selfhood, of being a woman which is important in having self confidence.

We were also involved with the UK working group, part of WRC , we went to Geneva for the last UK cedaw examination, in 2013 we were able to put in some recommendations for disabled women and  this year we went to CSW (Commission on the Status of Women) in NYC to talk about the devastating cuts by the UK government on disabled people.  The UK govt has been found to have gravely violated the Rights of disabled people by the UN Committee by its austerity measures. It’s not easy to be a disabled campaigner – there are some serious barriers: lack of access, being left behind in the public space as a result of discrimination, the lack of funding, energy and time. Disablism/ ablism is rampant. The starting point is often just to insist for our right to be there, and often that fight can be so exhausting you re left with no energy for the event itself. I think being a disabled campaigner means you need some self care too and prioritise – hence things I do can take longer to come to fruition or take the back burner. We have to balance what we do juggling work, family and energy levels. Maybe the role of the change maker is this case is to rethink and give voice for those  women many of whom are struggling by having their independent living threatened by savage cuts to their care packages, their access to work support, their benefits slashed, their motability vehicles being taken away. Some of them are made homeless by things like the bedroom tax, if they face domestic violence perpetrated by their carers, they are not believed and oftentimes, they have no where to go. A few of them have committed suicide. And there will be more, people want legislation to allow assisted suicide. Disability hate crime has gone up and we are seen to be burdens for feminists, as unpaid care work they have to shoulder.

But disabled women are at the forefront of the present disability movement, and I would like to pay tribute to Debbie Jolly, a co founder of DPAC and fundamental in campaigning for the Rights of disabled people, who died this week.

Remembering the murdered #sagamihara19

Last Tuesday, on the 28th July, I was bleary eyed, jet lagged from my journey back from Malaysia feeling very relieved that my power wheelchair came back in one piece with no visible damage when I read with misbelief that a man had got into a residential home, Tsukui Yamayuri En (Tsukui Lily Garden) facility in Sagamihara, south of Tokyo, Japan and murdered 19 disabled people. I was in shock imagining the fear and the chaos these people must have felt during the time he wrought the carnage. They were trapped in their beds, there was no escape for these disabled people. I know exactly how it feels when you’re bed bound. The horror of it all. If I feel outrage for the people who died, I feel even more for the survivors who have to deal with the aftermath. They must be completely traumatised as well as their family, friends and the people who care for them.

I know others in the disabled community have blogged about this but for those who do not know the story – a knife wielding attacker slit the throats of several residents, nine men and ten women, aged between 18 and 70 and injured 26 more under the belief of Nazi eugenics ideology. I will not name him and give him that glory while the victims remain nameless. I want to write this from an East Asian perspective if possible.

He had given warning previous to the attack, in letters he wrote in February that he could “obliterate 470 disabled people”, Kyodo news agency reported. He said he would kill 260 severely disabled people at two areas in the facility during a night shift, and would not hurt employees.

He also said, 

“I envision a world where a person with multiple disabilities can be euthanised, with an agreement from the guardians, when it is difficult for the person to carry out household and social activities.

I believe there is still no answer about the way of life for individuals with multiple disabilities. The disabled can only create misery. I think now is the time to carry out a revolution and to make the inevitable but tough decision for the sake of all mankind. Let Japan take the first big step.”

These words sent a chill down my spine. Originally I had thought that he must have mental health issues, it must be some kind of internalised self-hate, that he was carrying out some kind of twisted hara kiri, a form of ritual suicide but he didn’t kill himself, he does not self-identify as disabled, he gave himself up to the police. I was doing my own stereotyping from my impressions gleaned from Japanese films. It isn’t that.

Then like many of the disabled community I wanted to know the faces, the stories of those people who died. I want to mourn them properly. It is said that the families did not want for them to be named because of the continuing stigma of being disabled. And I rebel against that  – why are disabled people always invisible? I remember crying at the Holocaust Museum in Washington DC when I read a sign saying something like there were not many photos of disabled people killed then because they were not photographed. The implication is that nobody thought they were worthy of having their photos taken at the time.

In these days of social networks and the instant media we saw and mourned the mass killings in Orlando and in Nice recently. So I asked the question: where are the outpourings here? Things have not changed. Disabled people are still not worthy – our stories are still not heard. Only in the disabled community there were the outrage and sorrow expressed. Is it because it happened in Japan? Yes, I had white people telling me that it’s not surprising that it happened there, it’s the ‘culture’, disability is not accepted, ‘ they hide their disabled’ and I nearly screamed but eugenics is not part of the Eastern culture. I am brought up in the East, in Malaysia, people did suggest to my parents that they should put in an orphanage but nobody said I should be dead. This man was influenced by Nazi eugenics idea – so it was imported from the west! And it is here in the UK that disabled people are hounded to death/suicides sometimes by the Department of Work and Pensions. It is not as gory as a bloodied kitchen knife in the middle of the night but the result is both ending in pain filled deaths as a result of their disabled status. And the reasoning behind both is that disabled people’s lives are not worth keeping.  I struggle to understand when I campaigned against assisted dying in the UK. The concept does not exist in the East. Human rights is a thorny issue there but there is no ‘right to die’ only the right to live. Would there ever be that discussion? From all accounts, the care facility, Tsukui Yamayuri En (Tsukui Lily Garden), is a good one in Japanese standards. There was mention of integration. I fear for the future of the residents that they will now get locked away to ensure security and in the environment of fear. I am worried that there would be repercussions for disability organisations working for independent living that might impede their progress of integration, against segregation. I also fear that people with mental health issues might get worse incarceration if it was decided that this murderer did it because of his mental state.

Here, in the UK, we talk a fair bit about intersectionality and I am very conscious that my identity intersects with race, gender, disability and being a migrant. Many of my peers write about the importance of diversity but somehow disability often gets left behind in the discourse.  We will not get the ‘je suis …’ status because not many want to be connected to disability not even those who are disabled but have hidden disabilities because of the stigma.

I am struggling to understand why these people should be nameless. This is happening at the same time when we are looking forward to watching the ‘super humans’ Paralympics in Rio. There seem to be a huge difference between the ‘Yes we can’ refrain to those nameless victims in the care facility.

How do we reconcile the differences? Dennis Queen and I have organised a vigil to remember the #Sagamihara19 outside the Japanese Embassy on Thursday 4th August starting at 4pm for disabled and non-disabled to mourn them. There is an online book of condolence to add your name if you so wish to do so at and an online international vigil on twitter hosted by @DisVisibility (UK time 23:00).

p/s this was totally unintentional but the number 4 for the Chinese is linked phonetically with death. Thursday is the 4th day of the week, at 4pm on the 4th.

After discussing it with someone who said the families do not want to be named and apparently journalists have asked. I am beginning to understand that fear of intrusive journalists – do we have a right to salve our curiousity? its a different society – do we have to view it through our our own prisms? I include myself that I demand to have that information but what purpose would it serve? I should be more concerned that the disabled people organisations are able to do their work towards independent living for their people. I just saw this – that Japanese Paralympians pay tribute to the massacred victims – they do not appear to be forgotten in Japan!

Japan’s Paralympic team members paid their respects to the 19 victims of the recent massacre at a care home for disabled people while vowing to win 10 gold medals in the Rio Games.

The 127 athletes and 98 officials in the Japanese delegation held a moment of silence for the victims of the July 26 attack during a departure ceremony in Tokyo on Aug. 2

The team members pledged to do their best to promote a society where people with disabilities can live side by side with able-bodied people.

“For more than half a century, we’ve been promoting self-reliance of disabled people and their social participation through sports activities,” said Mitsunori Torihara, chairman of the Japanese Paralympic Committee, in his speech. “We can never forgive the atrocious incident that occurred.”

Event : Vigil for Sagamihara murdered victims 4th Aug at 4pm

This was started as an event on Facebook. But it came through that some people did not use or want to use Facebook hence I am putting /copying it here.

 a Japanese flag shedding one red tear drop. The universal symbol for disability is in the middle of the flag. The text reads 'Mourning those killed at Tsuki Yamayuri En. End hate against disabled people'. The black triangle logo, an upturned white triangle on a black background, is beside the text.
Event – Vigil Sagamihara murdered victims  outside the

Japanese Embassy 101-104 Piccadilly, London W1J 7JT

(nearest accessible tube Green Park station (Jubilee Line. Travellers from up North or Midlands can get here via Kings Cross/St Pancras Picadilly Line. Also interchange with Victoria line)

Buses which go to Green park station 9; 14; 19; 22; 38; C2; N9; N19; N22; N38; N97. 22. We are not sure about parking )

Access – there will be BSL interpreters but we will not be having many speeches. For people with visual impairments if you need guiding from tube station please send me an email asap eleanor.ila@gmail.com. If you need help with travel expenses in order to get there, please let us know asap too if we can help.

Black is the colour for mourning, we are not sure about candles because it will still be light. We will be bringing calla lilies – one of each of them. Calla lilies are scentless and do not have pollen for anybody who might be allergic. You are welcome to bring other flowers if you so wish. If you wish to tweet to say that you re making your own vigil at home in your own way – the hashtag is #disabilitysolidarity #disablistviolence Disability solidarity because we share in the sorrow and the horror of those affected and that disabilist violence is happening everywhere.

There is an online condolence book if you wish to sign at https://sagamiharacondolencebook.wordpress.com/ from DPAC

イギリスの障害者は日本で2016年7月25日に亡くなりました障害者の家族に心よりお悔やみ申し上げます

We will mourn for our disabled brothers and sisters murdered at Sagamihara for being disabled. https://www.theguardian.com/world/2016/jul/25/tokyo-knife-attack-stabbing-sagamihara I suggest that we mourn respectfully for their deaths – we can raise questions on their incarceration elsewhere but we want to deliver our condolences so that we show we care about our disabled brothers and sisters. They do not deserve to die in silence. We do not stereotype and blame Eastern or Japanese culture. Eugenics is not an Eastern practice. #disabilitysolidarity#disablistviolence

 

Links to the reports

Knife attack in Sagamihara, Japan leaves 19 dead – video from The Guardian


The knife-wielding attacker who slit the throats of dozens of residents at a care home for people with disabilities on Tuesday cited a belief in the ideology of Nazi leader Adolf Hitler during a brief period of hospitalization in February

Support for disabled people (video)

Relatives and loved ones of those killed in Japan’s worst mass murder in decades are mourning their losses. People laid flowers on Saturday in the front of the disabled care home in Sagamihara City near Tokyo.

Links to blogs (just a few )

#MebeforeYou to #LiveBoldly

 

crowd of people on both sides where a big banner was displayed
The protest started – photo provided by Donnacha Delong

Last Wednesday, I was with a group of protestors at the ‘Me Before You’ premiere to show our anger about the film with its dangerous message : that death is preferable and more heroic/ romantic than life with a severe impairment. Many other reviews such as the one from the New York Times and from the Guardian– and other disabled folks have written/blogged/filmed /videod their disapproval so I won’t repeat them here. But here is one good critique of the film and other films that show that the disparity of what is deemed tragic (in suicide) for non disabled is brave, right and understandable for disabled people.

At the protest, I caught that exchange between Liz Carr and Jo Jo Moyes on my smartphone, the sound here is not very good but Channel 4 used it and added subtitles and footage from elsewhere.

Jo Jo Moyes asked Liz if she had read the book or seen the movie. (Liz replied that she had.) Now I did get a copy distributed while I was in the ‘crip pen’ (an area cordoned off just for wheelchair users) so I thought I would read the book before airing my views. I refuse to have to pay to see the film though.

It is a British romance via Hollywood. It has tinges of The Diary of Bridget Jones – the feckless, impoverished woman with the rich, powerful, rude and surly male lead. Except in this case Emilia Clarke plays  Louisa Clark who lives in a rural area whose main skills seem to be making tea and toasting teacakes and he is Will Traynor who is a quadriplegic. She is vehement that she cannot clean ‘wipe bottoms’ and any of the mucky jobs, she’s had an idea from the care her grandfather needs but she want the money so she has no choice. Here is my first objection – the underlying idea of the ‘messiness of care’ and before she falls in love with Will Traynor, she calls it the worst job in the world. From what I can see, she had an easy job, she could have spend the time reading or watching television or doing Facebook. Nope, she irritates Will. She makes a terrible personal assistant /caretaker. She does not know her rights as a worker – how many hours does she work? She can drive but she doesn’t have a car, she uses buses. She has no aspirations, she answers ‘I don’t know. I have never thought about it.’ when he asks her what she wants from her life. So shes like an empty page for him to fill, to teach, so he does – gets her to watch a foreign film with subtitles and takes her to a concert, to a posh wedding and pays for their holiday. Mills and Boons stuff. (Am I allowed to question how she is able to research for holidays on the world wide web but she can’t do other things useful online?)

So he’s the macho man before his accident – he says

‘I loved my job, my travels, the things I was. I loved being a physical person. I liked riding on my motorbike, hurling myself off buildings. I like crushing people in business deals. I liked having sex. Lots of sex. I led a big life.(p.426).

if he was such a successful man – how come he is still living with his parents? Why isn’t he in London where there is much more happening? Doesn’t he have money to buy/ adapt any accommodation? Why is he allowing his mother to hire staff for him? ( I can see that they might be breaking labour law by not giving Lou more breaks) So he was a banker – one of those who screwed up our economy and he would have had no qualms at voting to cut benefits. His accident happened 2 years ago, he had so much time to brood why hasn’t he been on the internet to see the possibilities? if he knows about Dignitas. Why is he such a failure – of course he is in mental distress and mourning for his past wasteful and harmful self but surely he would have seen that there are opportunities, he can still be a banker and screw people. Surely he has his own income with the insurance money and does not have to rely on anybody. And oh yes, no sex? Okay I can understand that maybe he can’t have penetrative sex but he has a playmate and sex does not have to be penetrative. And how come he calls her Clark and not Lou? is this a public school thing? Remember he likes ‘crushing people in business deals’? Disability has not made him any more sympathetic to weakness or vulnerability.

For romance, I think there is so much more in Jane Eyre – similar theme, in the end Jane takes care of Rochester and it was on her terms. For all his faults, he didn’t go into a deep decline and suicide. But they are poles apart.

My criticism is that Jo Jo Moyes did not really craft her story – there are so many holes in the story. I don’t understand why people were going on about tissues needed. My inclination is to conclude that he killed himself because he had so much disablism inbred in him (his mother does not seem to be particularly warm maternal type) that he could never live with disability – he hates us. He will not settle for Lou because he cannot allow himself – I think he doesn’t see her as his equal.

And it is romantic for some women to dream that a man will take them out of the drudgery of poverty and the chocolatey coating of love without responsibility. He sails into the sunset with Dignitas and she gets the horizon of possibility with the legacy.

What does the reader/cinema goer take away? Girls, find yourself a rich disabled man who is suicidal and you might end up with a jackpot – you won’t even need to fuck him. Disabled people – get this ‘ its a far far better thing to do’ …than to stick around, your life is over, give the ones you love a chance to have the type of life you can never have. And this is for the Western audience, your life is not worth living

Steven Spohn is right when he wrote:

So, if the movie isn’t about them getting it on or Will’s triumph over adversity, what is the point of the movie?

Will is a plot device.

The book was never about Will. The story is about Lou and how Will’s influence changes her life. Lou fails to show Will the joy that can still be had in the world, even if you find love, because you are dealing with some sort of disability.

If I am cynical, that’s the target audience, women who still dreams of being rescued by knights on white horses, Cindrella type of fairy tales. That’s who Jo Jo Moyes expects to buy her book, and judging from the fact it is a best seller, she’s right. And this is why she took all the ‘messy’ parts off and Lou does not have to deal with those. Or that there is a question of a employment relationship here? Its a romance on the Mills and Boons formula. Forget feminism. It wouldn’t work if Will is a disabled woman! I am all for escapism but this is sloppy writing.

I saw the Thai advert for for this film, so there in South East Asia, without the filter of disability rights, the communities there will conclude that disabled lives are burdensome and look at the romance – forget romance, you should top yourself. That is a sobering thought.