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.

At the V&A: Identity, and using the right language

crowd of people sitting on the floor, some cross legged, mostly young people.
the audience

The week before last, I recieved an e-mail

I am contacting you on behalf of gal-dem (http://www.gal-dem.com/ )  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:

“….didn’t see it as a biological designation—you’re born Asian, you’re born Black, you’re born African American, whatever—but it is a solidarity definition, a commitment to work in collaboration with other oppressed women of color who have been “minoritized.”

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

tables set up for dining with people, lovely room with tinted glass pictures
Soul food kitchen where carribean cooking was demonstrated

great contemporary portraits

2 portraits of a black woman topless, shes holding big feathers, the other of her with her back
in the gallery

but I could not see the poets performing their poems 🙁 a shame…

road of people with their backs to the camera
the backs…

On Media Diversified – Rights Not Games: A Week Of Disability Resistance

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.

Read the rest of the article at Media Diversified

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.

 

New York City – here I come

Aisle on the plane
Aisle on the Virgin Atlantic plane
Toilet Door with sign of wheelchair user and mother with baby
Accessible toilet on plane

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 
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.

At Leeds CDS for ‘Developing Disability Rights in China’ event

I was fortunate enough to be invited to chair a session at the University of Leeds ‘Developing Disability Rights in China: From Paper to Practice?’ jointly organised with China Vision and NUI Galway.

I’ve always been interested in disability news from China so I think this is a great opportunity to catch a glimpse into disability movement there and perspectives from Chinese activists and researchers. A heartfelt thank you to CDS, China Vision and NUI Galway for making it happen. I hope it will lead to more in a similar vein.

Developing Disability Rights in China: From Paper to Practice?
programme

It was fascinating to listen to the Chinese experts speaking on the status of disability law in China and bringing in some test cases. I was particularly taken by Chen Bo’s talk on Mental Health Law in China with examples on recent law cases. He mentioned a woman whose family tried to get her sectioned because she refused a marriage! And I thought it was hard having mental health issues in this country. The problems of having an imposed ‘guardian’ /carer who might be working against your best interests and moving you into a hospital/psychiatric institution.

And on inclusive education, there are many obstacles and challenges to basic education said Ni Zhen and not much resonable adjustments to help with access to higher education.  Disabled students still have to prove that they can achieve without support. He also said he thought that in the hierachy of impairments, it is those with physical impairments are at the top. It is the medical model (undoubtedly) which prevails.

I found it sobering that they rely so much on the UNCRPD – one of the speakers said it was like a bible. The CRPD does not have any jurusdiction on domestic law – I am unclear what bearing /jurisdiction the CRPD has on the government there. Especially in the light of the UN Enquiry into the rights of persons with disabilities here in the UK – see the research briefings.

Anna also arranged a lovely informal dinner the night before.