I moved to the UK in 2005, after returning to France from studies and work in the US. I started a website with a blog when I was in France – http://www.ewheeling.info/blog.html. It reminds me of the time I was seeking for employment and settling for divorce in Strasbourg. Some of it is about disability and accessibility in France.
I went back to it today when I was looking up something. its interesting to see that I have not changed that much. I’m wondering if I should continue and update it.
My own update on this website is that I have not been super well energy wise but also I ve been reflecting a good deal on identity. I will be setting that here soon. đ
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 Â
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.
this is part of a set of blogs in preparation for a chapter in a journal which asked me to write â 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 activismâ âŚ..
I’ll admit I scratched my head when I was wondering how to write about ‘feminism’ and its role in my life. Lani Parker asked me if I was a feminist in her podcast
Lani: Weâve talked about intersectionality a bit and identity politics, and moving towards the movement stuff. I was wondering, and we talked about bringing in womenâs issues and race issues. I was wondering, what does feminism mean to you? Because youâre a very strong feminist.
Eleanor: Thank you. Iâm not sure Iâm a strong anything. Iâve not really studied feminism as a theory or gone to any feminism classes or courses, or anything like that really. I think for me, feminism is being able to do what you want to do when. Your gender shouldnât limit your opportunities. Having said that, I realise that itâs not, even if you think youâre a feminist, there are a lot of things in this world that put a stop to your choice, because itâs just easier to conform. I know I got married quite young, and if I was a feminist, if I wasnât a disabled person, I think, thinking back, I might not have got married at that age. And I think I got married then because I had this internalised idea of myself as not being worthy. And I think that if I didnât marry the first person who asked me, I might never get another chance. Whereas I donât think that I would think that if I was a non-disabled woman? So thatâs why Iâm saying that your choices are compromised, and thatâs the intersections theyâre kind of in.
I think back of the influences from my own background. My mother is a strong woman, she travelled on her own and escaped from the countryside to go to the city to study during the Communist takeover in Quangzhou. She supported my father in his business and was a businesswoman in her own right. But she stayed well in the family.
My first understanding of the misogyny and patriachal society is from church. One of my mentors, Mrs M committed suicide because of domestic violence and her deep unhappiness also from the fact that her Indian community gave her no support. Of course I have imbibed enough Chinese and Indian films to know how chances are stacked against women. Although I have to add that that Chinese kungfu movies (of which I am a huge fan) have always had strong women warriors and fighters.
Its nothing like the experience of despair and inexplicable resignation of a community when it unfolded in front of me as in the death of a respected member of the community. Everybody seemed to be resigned to it – nobody could/would help her. I raged – I did not understand why she didn’t have choices. I did not understand the patriarchal rules they adhered to. Nobody was denying he abused her. Even sadder was that her sister was given in marriage to help raise the four children she left behind.
I think it was that and another near suicide of another close Indian friend – also through domestic violence that I stopped believing in romance. It simply did not exist in my community. Women got married. They had children. Some men (friend’s fathers) had more than one wife. Even the school secretary but they are not mistresses, they are concubines, unless they are Muslims, then they are wives. We did not question it, it was part of life as we knew it. There was no judgemental bullying of the offspring of such alliances either.
But I got married at a young age myself. I think whatever I felt, I wanted to belong to the idea of the ‘feminine mystique’ . It is still a patriarchal society and as a disabled woman, I longed to belong as with a ‘normal’ ‘rites of passage’ as a woman. And I became a wife and a mother without ever questioning myself.
It was only after the birth of my second child, I decided I should also think of having jobs but soon we moved to Strasbourg (the opportunities for partner and children came before considerations for my own career.) I should say I was enjoying joining other women’s groups and disabled people groups in London at the time, so it was not an easy choice personally.
The logistics of making a new home, grappling with children’s routines, getting to grips with a different culture and language took all my energy and space at the time. I enjoyed expatriate life, made new friends and a new semi diplomatic status. But it had its own toll on me. I felt isolated and without access to my own circle of friends (since I didn’t work) and intellectual stimulation.
I started on a Masters in English Literature with the OU. This where I started researching and thinking about feminism looking at women revolutionaries in the 1790’s, such as Eleanor Ty’s Unsex’d Revolutionaries: Five women Novelists in the 1790’s
So my journey to feminism is not through the suffragettes or learning about them. It was from the voices of Mary Wollstonecraft and Mary Hays. I started noticing the absence of women’s work. I had collaborated and presented papers in Museum conferences about gender issues.
this is part of a set of blogs in preparation for a chapter in a journal which asked me to write â 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 activismâ âŚ..
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.
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.
‘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!)
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.
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.
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.
Eleanor’s funeral is tomorrow and I am to say a few words there. I find it very difficult to formulate the words.
We had known each other for 7 years now. We had spend many hours eating, phoning, discussing, arguing, travelling, commiserating together. Eleanor came with me to pick up keys to my daughter’s flat which was going to be my new home in London. My last phone conversation with her was about the death of my dad. She had met the rest of my family when they came over when I was a torchbearer in Coventry in 2012. We exchanged news and she told me how she was still affected by her mother’s death. And of course in our last meeting at Westfield, in Stratford (our midpoint between journeys) she told me the details of her cat’s death. She loved that cat, she was very upset and she cried. And in one of the in between conversations she told me how she considered me as one of her best friends and have great respect for what I do – because she knew how I was upset by an incident with someone else. She was the kind of person who knew how important support was. Last week or so ago at her UNITE memorial service, I heard other people giving testimony to her warmth, passion and dedication to the political work she did. That is a part of her life I m not that familiar with, we did not live in the same area. I am not a party political person even though we were in disability campaigns. We had been to many protests together and she came with me to march with the DPAC banner at the March 26th 2011 organised by the TUC and in other places like Manchester with Gerry , her partner.She was instrumental in getting our presence acknowledged at the #Sagamihara vigil outside the Japanese Embassy. (She knew one of the guards there who went in to inform them). This was her message in this photo.
She was also a fellow co founder of Sisters of Frida, a disabled women’s collective. We went to Geneva together to attend the UN CEDAW event to represent disabled women in the cohort of women organisations organised by the Women Resource Centre.
Eleanor in Geneva with the CEDAW team
And now she is no longer with us. I want to say it is my friend that I will miss. I will miss my friend every New Year’s Eve – we had been spending it together for many years now. We had the Chinese hotpot and saw the year in together.
I hope to set up a memorial trust of some kind for Eleanor to remember her by and support a disabled woman to attend an event in her memory. I think she would approve of that. Eleanor RIP, my good friend.
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, Â 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. Â 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 donât 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. Itâs not easy to be a disabled campaigner â 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.
I am contacting you on behalf of gal-dem (http://www.gal-dem.com/ )Â and the V&A Museum, as we hoped you would be interested in taking part in our upcoming event.
Hosted on the 28th October, gal-dem are taking over the Museum to curate a night of talks, workshops and films which celebrate women of colour.
During the course of the evening we will be hosting three panels discussions exploring what it means to be a woman of colour in various spaces. The first will be on creative women, the second on music and the third on politics. Each talk will be aprox 30-40 minutes long and include 4 women on each panel. We would love you to speak on the panel for politics. Is this something that you would be interested in?
I was pleased to be asked and agreed even if it was scheduled at the late hour of 9pm. The V&A requires a fair bit of travelling to get to and back from where I am.
Upon discussion about the panel discussion itself, one mentioned surprisingly that for her, ‘people of colour’ referred to Black people, those of Afro-Carribean heritage and with someone else who is herself of that background, said she did not like the term. I asked this of a Black British person I respected and she told me that it’s used mostly in the USA, with its origins there, but not a prefered term here in the UK – similar to the usage of ‘people with disabilities’ (mostly used in the USA ) and ‘disabled people’ (here in the UK).
I started questioning on how I would identify myself then as an East Asian or South East Asian/ Malaysian Chinese/British Chinese. But I do not really want to box myself. I had written briefly on that discussion of terminology for Media Diversified.
Of course I question myself on identity politics – should identity be framed as only a political issue? No is the brief answer. Its also very much a cultural issue. I was brought up in a very multi cultural, multi faith environment where we had to learn more than one language but my parents only spoke to us in Cantonese and I grew up listening to Cantonese opera but watching Bollywood as well as Hollywood movies. I did South East Asian history and English Literature learning about daffodils but knowing nothing about the local fauna and flora. I’ve moved so much in my life and gained nourishment from each of the places I have called home, Kent, Yorkshire, Strasbourg, Austin, Massachusetts, Coventry and London…
I am very grateful to friends, both American and British, hearing my doubts voiced – took the trouble to tell me about the origins of the term ‘women of colour’ from Loretta Ross:
“….didnât see it as a biological designationâyouâre born Asian, youâre born Black, youâre born African American, whateverâbut it is a solidarity definition, a commitment to work in collaboration with other oppressed women of color who have been âminoritized.â
This is exactly how I would want to add myself there, as a gesture of solidarity so that I do not have nail my nationality, birthplace, ethnicity (colours) to the mast. In a way it is like the social model of disability, I do not have to state my impairments – by saying I am disabled, I am joining a community which had been discriminated against.
It was a great evening, I ate with friends there even if we did not make it to the Soul Food Kitchen, I was dazzled by the diversity of the Gal-Dem ensemble, it was so so busy…I’m sorry to have missed the ‘twerking’ session
Soul food kitchen where carribean cooking was demonstrated
great contemporary portraits
in the gallery
but I could not see the poets performing their poems đ a shame…
I was asked by Media Diversified to write a piece on the Paralympics. Originally I wanted to explore the opportunities of disabled people of colour in the arena of sports. I tried to get an interview with Ade Adepitan – for me, he’s the symbol of the disabled sportsperson still in that arena as a media personality. But he’s a very busy man even if he agreed to an interview, we just did not make it. To be honest, it made me realise I did not understand much about the world of sports – not even Boccia.
I am glad that Vilissa Thompson wrote on the overwhiteness of the games. My role in 2012 was as a torchbearer which, at the time, earned me some criticism because of the anger over Atos as a sponsor. I was accused of betraying my disability activism which I deeply resent as partly racist especially when nobody else was attacked in the same manner for contributing to the Paralympics Opening Ceremony (all white ). However, I do understand activism and it’s important to note the protests. I was not at any of the events because I was away at a disability conference in Lancster but I kept in touch through social media. I suspect, in my heart of hearts, the memory of the hurt from 2012 still rankles .
Last Sunday, I woke up to news on Malaysian social media that three Paralympics gold medals had been won at Rio. As a disabled woman with Malaysian roots, I felt very proud. This was a first â Malaysia doesnât usually feature much in the Paralympics (or the Olympics).
However, itâs a different environment here in the UK (where the Paralympics is being broadcast on Channel 4, with its visually spectacular, slickly produced, and controversial trailer, Weâre the Superhumans). Disabled activists, such as the group, Disabled People Against Cuts (DPAC) used the publicity generated by the Rio Paralympics to draw attention to the âdisproportionate impact of austerityâ on disabled people in the UK.
They planned a week of action; Rights Not Games, to draw attention to the cumulative impact of the cuts imposed by austerity. The intention was not to oppose the Games or criticise the British Paralympians, but to highlight the contrast in funding for the Paralympics with the benefit cuts and independent living support for disabled people.
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
So, if the movie isnât about them getting it on or Willâs 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 Willâs 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.
