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 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.

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.

 

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

Remembering the murdered #sagamihara19

Last Tuesday, on the 28th July, I was bleary eyed, jet lagged from my journey back from Malaysia feeling very relieved that my power wheelchair came back in one piece with no visible damage when I read with misbelief that a man had got into a residential home, Tsukui Yamayuri En (Tsukui Lily Garden) facility in Sagamihara, south of Tokyo, Japan and murdered 19 disabled people. I was in shock imagining the fear and the chaos these people must have felt during the time he wrought the carnage. They were trapped in their beds, there was no escape for these disabled people. I know exactly how it feels when you’re bed bound. The horror of it all. If I feel outrage for the people who died, I feel even more for the survivors who have to deal with the aftermath. They must be completely traumatised as well as their family, friends and the people who care for them.

I know others in the disabled community have blogged about this but for those who do not know the story – a knife wielding attacker slit the throats of several residents, nine men and ten women, aged between 18 and 70 and injured 26 more under the belief of Nazi eugenics ideology. I will not name him and give him that glory while the victims remain nameless. I want to write this from an East Asian perspective if possible.

He had given warning previous to the attack, in letters he wrote in February that he could “obliterate 470 disabled people”, Kyodo news agency reported. He said he would kill 260 severely disabled people at two areas in the facility during a night shift, and would not hurt employees.

He also said, 

“I envision a world where a person with multiple disabilities can be euthanised, with an agreement from the guardians, when it is difficult for the person to carry out household and social activities.

I believe there is still no answer about the way of life for individuals with multiple disabilities. The disabled can only create misery. I think now is the time to carry out a revolution and to make the inevitable but tough decision for the sake of all mankind. Let Japan take the first big step.”

These words sent a chill down my spine. Originally I had thought that he must have mental health issues, it must be some kind of internalised self-hate, that he was carrying out some kind of twisted hara kiri, a form of ritual suicide but he didn’t kill himself, he does not self-identify as disabled, he gave himself up to the police. I was doing my own stereotyping from my impressions gleaned from Japanese films. It isn’t that.

Then like many of the disabled community I wanted to know the faces, the stories of those people who died. I want to mourn them properly. It is said that the families did not want for them to be named because of the continuing stigma of being disabled. And I rebel against that  – why are disabled people always invisible? I remember crying at the Holocaust Museum in Washington DC when I read a sign saying something like there were not many photos of disabled people killed then because they were not photographed. The implication is that nobody thought they were worthy of having their photos taken at the time.

In these days of social networks and the instant media we saw and mourned the mass killings in Orlando and in Nice recently. So I asked the question: where are the outpourings here? Things have not changed. Disabled people are still not worthy – our stories are still not heard. Only in the disabled community there were the outrage and sorrow expressed. Is it because it happened in Japan? Yes, I had white people telling me that it’s not surprising that it happened there, it’s the ‘culture’, disability is not accepted, ‘ they hide their disabled’ and I nearly screamed but eugenics is not part of the Eastern culture. I am brought up in the East, in Malaysia, people did suggest to my parents that they should put in an orphanage but nobody said I should be dead. This man was influenced by Nazi eugenics idea – so it was imported from the west! And it is here in the UK that disabled people are hounded to death/suicides sometimes by the Department of Work and Pensions. It is not as gory as a bloodied kitchen knife in the middle of the night but the result is both ending in pain filled deaths as a result of their disabled status. And the reasoning behind both is that disabled people’s lives are not worth keeping.  I struggle to understand when I campaigned against assisted dying in the UK. The concept does not exist in the East. Human rights is a thorny issue there but there is no ‘right to die’ only the right to live. Would there ever be that discussion? From all accounts, the care facility, Tsukui Yamayuri En (Tsukui Lily Garden), is a good one in Japanese standards. There was mention of integration. I fear for the future of the residents that they will now get locked away to ensure security and in the environment of fear. I am worried that there would be repercussions for disability organisations working for independent living that might impede their progress of integration, against segregation. I also fear that people with mental health issues might get worse incarceration if it was decided that this murderer did it because of his mental state.

Here, in the UK, we talk a fair bit about intersectionality and I am very conscious that my identity intersects with race, gender, disability and being a migrant. Many of my peers write about the importance of diversity but somehow disability often gets left behind in the discourse.  We will not get the ‘je suis …’ status because not many want to be connected to disability not even those who are disabled but have hidden disabilities because of the stigma.

I am struggling to understand why these people should be nameless. This is happening at the same time when we are looking forward to watching the ‘super humans’ Paralympics in Rio. There seem to be a huge difference between the ‘Yes we can’ refrain to those nameless victims in the care facility.

How do we reconcile the differences? Dennis Queen and I have organised a vigil to remember the #Sagamihara19 outside the Japanese Embassy on Thursday 4th August starting at 4pm for disabled and non-disabled to mourn them. There is an online book of condolence to add your name if you so wish to do so at and an online international vigil on twitter hosted by @DisVisibility (UK time 23:00).

p/s this was totally unintentional but the number 4 for the Chinese is linked phonetically with death. Thursday is the 4th day of the week, at 4pm on the 4th.

After discussing it with someone who said the families do not want to be named and apparently journalists have asked. I am beginning to understand that fear of intrusive journalists – do we have a right to salve our curiousity? its a different society – do we have to view it through our our own prisms? I include myself that I demand to have that information but what purpose would it serve? I should be more concerned that the disabled people organisations are able to do their work towards independent living for their people. I just saw this – that Japanese Paralympians pay tribute to the massacred victims – they do not appear to be forgotten in Japan!

Japan’s Paralympic team members paid their respects to the 19 victims of the recent massacre at a care home for disabled people while vowing to win 10 gold medals in the Rio Games.

The 127 athletes and 98 officials in the Japanese delegation held a moment of silence for the victims of the July 26 attack during a departure ceremony in Tokyo on Aug. 2

The team members pledged to do their best to promote a society where people with disabilities can live side by side with able-bodied people.

“For more than half a century, we’ve been promoting self-reliance of disabled people and their social participation through sports activities,” said Mitsunori Torihara, chairman of the Japanese Paralympic Committee, in his speech. “We can never forgive the atrocious incident that occurred.”

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.

 

Access in New York city

supershuttle2
super shuttle

My flight over from Heathrow to John F Kennedy Airport with Virgin Atlantic was smooth until we reached JFK airport. The engineer at Heathrow airport had, for some reason, detached the batteries and the chair would not charge up. None of the engineers at JFK knew how to get into it to reattach the batteries. I had to find the manual online to show them and after an hour they finally figured out how to get into it to attach the chair.

 

But the super shuttle turned out fine and got me to the Hampton Inn hotel in good time.

photo of 2 double beds
Hampton Inn UN
Hampton Inn bathroom
Hampton Inn bathroom/shower

I was invited to share a room at Hampton Inn UN which is within a spitting distance of the UN. This hotel has an electric door and has total level access. It had an accessible room with 2 beds and wet room. They lowered the bed for my room mate. The service is excellent with breakfast included and hot drinks on offer all day. It included a business centre and free printing. There were free cookies everyday at reception. I really appreciated the generous number of power sockets next to the bed. This is very helpful when there were wheelchairs and mobile devices which needed charging.

I ve also shared another hotel Pod 39 a few blocks away. Access for wheelchair is through a ramp from the cafe. While the staff is very friendly and amicable, it does mean having to wait for their attention and standing outside to catch their attention. However, breakfast is not included, there is no access to hot drinks except at the bar. There was no shower stool when I arrived and upon requests they offered a small round stool. There was no grab bar, the water ran very hot and cold without warning, and nothing to to put soap, towels etc within reach. Upon more requests they found me a shower chair.

Hotel ramp
Hotel ramp
Pod hotel shower
Pod Hotel shower
Double bed at Pod 39
Double bed at Pod 39

Although I did not manage to use the public transport (due to the lack of time) there I was told that buses were all accessible and some of the subways – such as at the Grand Central. (I asked the concierge at the hotel for help).
I did use the accessible taxis which were great. And there is an app to help you order them but it was easy enough to hail them from the intersections.

Accessible taxi
Accessible yellow cab
accessible yellow cab with ramp
accessible yellow cab with ramp