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.
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 ambroidered 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.
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 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.
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.”
(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 firstname.lastname@example.org. 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.
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
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.