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 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 – Malaysia doesn’t usually feature much in the Paralympics (or the Olympics).
However, it’s 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, We’re 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 “disproportionate impact of austerity” 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.
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.
The journey to Heathrow went smoothly without a hitch from jubilee line to Green Park station to Piccadilly line and then change to Heathrow Terminal 4. I checked in and got to the right gate in good time and felt pleased. My seat was comfortable there was a free seat next to me so I could rest my feet on my bag and in a semi cross legged position. They changed my seat to the one right next to the accessible toilet and the stewardess took the trouble to reassure me that she will be happy to assist me if I had the need to use it. What more can I want? I watched a few movies, dozed a bit and felt here was a stress less flight.
until I landed at JFK airport. They did not quite seem to know how to transfer me and then they brought my chair up and it wouldn’t switch on. I asked them to lock and unlock the back mechanism several times and realised that somehow some idiot at Heathrow had disconnected the batteries without leaving any instructions to ground crew at JFK how to connect them back!
We then had to go through immigration control first and I felt like a criminal because they took all my fingerprints, both hands and a photo. But my mind was on my wheelchair and I thought it would be pointless to disagree. I ve never been fingerprinted in the UK and here is another government doing it?? The man who did it didn’t make it easier he was very curt – do US citizens get fingerprinted too?
Anyway it took 5 men and me showing them an online specs of my wheelchair to figure out how to get to the batteries and reconnect them. They said I should know! I sit on the chair, I ve no idea how to get into it and they didn’t even have a screwdriver between them. I usually carry one but didn’t think it was a good idea to carry one on an international flight.
The reserved super shuttle ride picked me up and delivered me to my hotel without much ado. My room mate, Sarah, kindly waited up for me in the accessible room at Hampton Inn UN. For the elevated price, it’s a notch below Travelodge but the service is good and the people are friendly. Lots of electric sockets and the wet room / bathroom is roomy. ( pictures to come later).
This morning I went to get my UN pass ( I am here for the UN Committee on the status of women event/ meeting) – there wasn’t the expected line and I had lunch at some eatery which charged by weight. Not going there again, service was indifferent and the food was tasteless.
i spent the rest of the day recovering from jet lag preparing for the 8 am start tomorrow. I m going to take note of which events I want to get to and catch up with my fellow CSW civil society colleagues from the UK.