Breaking out of the cocoon (5)

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

In the 1990’s, I went to USA on my own – one of the people I met was at the Asia Watch: Human Rights Watch office, Sydney Jones . I went back home to Strasbourg and the impact on me is obvious in that I wrote one of my first poems, Cocoon:

I stay in my tight cocoon

warm, snug and sheltered

from famines, war and strife

human rights violations

I watch you at your valiant job

in the asphalt jungle

teleconferencing across frontiers

being au courant with the latest events

in some far flung dictatorship

I am envious of you

the modern day Jeanne d’Arc

My domaine rests

with getting children places on time

school, music leassons, gym, swimming classes

cooking meals, dressing dinners

sorting out clothes, battling dust

mine is the mundane

that I am plotting,

dreaming,

awaiting,

fearing

metamorphosis

this cocoon is well spun

ordered,

silken nest

books lined on shelves

discussing, describing

the world without

exciting, inciting

the world within

an indolent world

so redolent of

a pampered expatriate existence

lotus eating

I am loath

to seek

lotus sitting

satori

this chrysalis

home and hearth

I cannot shed

bonded and bounden

my surviving abuse

for inaction/standstill

lax self discipline

like the hermit crab

scuttling with its borrowed shell

not showing its soft underbelly

in deadly fear of

exposure.

written in the 1990’s

I loved my children and adored being a mother, I enjoyed the priviledges of being expatriate in a beautiful city, playing host to the many visitors and new residents that it attracted (and still attracts). I had dinner parties almost every week, reveled in cooking for them all. I’ve even helped cook for two Archbishops of Canterbury, being part of the English Anglican community.

My French was rudimentary but it was sufficient for what I needed to communicate. I was in a bubble of an idylic existence. I did Zen meditation with a French Dominican priest. I had no idea of what my disabled community was doing in the UK – living amongst mostly white, non disabled community. I went to the university women’s association formed to welcome expatriate and sometimes, diplomatic wives. Learned to have vin noveau tasting sessions, how to make kugelhopf.

strasbourg cathedral with street of souvenir stalls
strasbourg cathedral with street of souvenir stalls

Seeing Sydney awoke something in me, the activist maybe. I started chafing at being the homemaker. The children had grown older, I was unhappy and our marital relationship deteriorated. Something in me broke and my mental health took a knock and it exacerbated my post polio syndrome. I fretted, scolded like a fishwife and at the time, there was a lot of roadworks. Strasbourg was being dug up for building the tramlines in which made Strasbourg the accessible city it is now. But at the time, it made me feel like a prisoner. I wrote this poem during that period in my life – kitchen table blues.

 

I grew to understand what loneliness meant when you re not alone. I understood what violence can mean which is not physical – the gaslighting and financial abuse. The inability to ask for help, the helplessness in not able to articulate the failure of a relationship when you have no one close to hear you. Everyone knew us as a couple, what looked like a wonderful caring spouse. The lack of support when you re a disabled person is even more acute when you re dependent on the one person. Strasbourg has also a transient population, some of my best friends had also left. 

However, one of the most influential event during that time for me, was a Redemptorist retreat I did in Dublin lead by a nun from California. I left a family holiday to do a retreat for some time on my own. I cannot remember the details but the lesson I took away was that women should not let themselves be martyed whatever the figure on the cross signified. The message came with more strength in that it was from a nun.  I might be wrong in my interpretation of that message but it gave me an impetus that I did not have to stay in my unhappy state inspite of an innate feeling that I would be abandoning my children who are my responsibility – however I realised that my mental health was at stake. What use would I be if I became mentally ill? I should say I had no doubts that they were very well grounded and they had no problems in school with consistent good results and their schedules were filled with after school activities. In the end my children had never accused me of abandonment but I believe my ex did.

read previous blog

 

 

Slow to feminism (4)

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

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

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

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

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

I was watching Korean series (as one does) Strong Woman Do Boon So     I wondered at the story line – here is a young woman seen to have incredible strength but her dreams were still centred on a young man who did not reciprocate her love and her boss who is a rich twat who tells her what to do (even though he pays her well to be his bodyguard ). I cannot but compare her with Hit Girl in the Kick Ass movie. There was no sense in ‘making the world a better place’ by using super powers for greater good. I find 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.                                                                    

 

Feminism from further afield (3)

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

I’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: We’ve talked about intersectionality a bit and identity politics, and moving towards the movement stuff. I was wondering, and we talked about bringing in women’s issues and race issues. I was wondering, what does feminism mean to you? Because you’re a very strong feminist.

Eleanor: Thank you. I’m not sure I’m a strong anything. I’ve 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 shouldn’t limit your opportunities. Having said that, I realise that it’s not, even if you think you’re a feminist, there are a lot of things in this world that put a stop to your choice, because it’s just easier to conform. I know I got married quite young, and if I was a feminist, if I wasn’t 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 didn’t marry the first person who asked me, I might never get another chance. Whereas I don’t think that I would think that if I was a non-disabled woman? So that’s why I’m saying that your choices are compromised, and that’s the intersections they’re 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.

 

Priviledges and Politics (2)

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

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

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

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

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

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

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

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

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

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

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

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

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

 

see previous blog

Start at the beginning (1)

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

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

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

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

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

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

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

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

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

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


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

Remembering Eleanor Firman

Eleanor smiling holding a glass of red wine, she has a plate of food in front of her. Shes wearing a black and white jumper.
Eleanor Firman, New Year’s eve 2011, Coventry  

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.

Group of women sitting around a table with drinks
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.

re In memory of Eleanor Firman on the Sisters of Frida website

note Eleanor Firman died Easter Sunday 16th April 2017

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…

When you ‘re a foodie on wheels

I am an unashamed foodie. This is a common trait I share with fellow Malaysians – our taste buds are honed from the multi-cultural, eclectic environment we were exposed to from birth. We can be eating Malay nasi lemak for breakfast, Indian roti canai  for lunch and Chinese char kuey tieu for dinner. We do not think twice about it, we eat out all the time. And on top of that I spend more than ten years of my life in France and in the USA. So yes, I know about good food.

Being an immigrant in the UK, I search for good ethnic food. England is full of immigrants who brought their cuisine with them, and there are clusters of places such as in the different Chinatowns and in Birmingham’s Balti Triangle. There are Malaysian, Vietnamese, Thai, Indian, African, Japanese, Persian, Turkish etc restaurants.

There is so much choice – Open Table sends me email offers all the time, I can look up Trip Advisor for specific restaurants on reviews and in London there is also Time Out. But I still need to do so much research on my own. Why? Because I am a wheelchair user and not many guides advise you on accessibility. I travel and very often I eat out on my own. Some restaurants have ramps but there is no way you can know that until someone goes in and enquire. I often have to telephone individual restaurants ahead to ask about their accessibility. Some of those who take the calls do not understand me and it can be amusing at times.

‘What do you mean, accessible’? Don’t worry we can help you in, we have strong men here to carry you’ or ‘ But our toilet is upstairs and the lift is out of order’, ‘Yes, we are accessible, we have only one step’. My favourite response –  ‘You have an electric wheelchair? Can you come in a normal wheelchair?’

As a disabled woman, some preliminary enquiries are better than landing myself in a compromising position by staff who insist on helping. It can be awkward as well in a small crowded space, customers can be pushing by you and the whole meal can become an unpleasant experience. And if you have to rely on staff to bring out a ramp, you cannot just leave of your own accord. I have yet to find a good Vietnamese restaurant that I can get in. There is one that I have frequented in Islington, but I need to sit outside, not a wise choice when summer is over. The waiter said his boss is busy with sorting out a new menu. Well that might be so, but he has lost my custom and that of my companions.

And of course there are times I eat with friends – some of them may even be other wheelchair users. In London Chinatown, I know only the Wong Kei (the staff no longer deserving of the reputation of being ‘rude’ anymore) which can cater for more than one wheelchair user comfortably. Having level access does not necessarily mean they can cater for more than one wheelchair user. Organising a party can be a nightmare job. Yes, there are other eateries which are accessible but it’s not just the access, the food has to be good and the prices, reasonable.

outside a chinese restaurant, Wong Kei, many passer bys.
Wong Kei Restaurant, Chinatown

 

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