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.
I was asked by Media Diversified to write a piece on the Paralympics. Originally I wanted to explore the opportunities of disabled people of colour in the arena of sports. I tried to get an interview with Ade Adepitan – for me, he’s the symbol of the disabled sportsperson still in that arena as a media personality. But he’s a very busy man even if he agreed to an interview, we just did not make it. To be honest, it made me realise I did not understand much about the world of sports – not even Boccia.
I am glad that Vilissa Thompson wrote on the overwhiteness of the games. My role in 2012 was as a torchbearer which, at the time, earned me some criticism because of the anger over Atos as a sponsor. I was accused of betraying my disability activism which I deeply resent as partly racist especially when nobody else was attacked in the same manner for contributing to the Paralympics Opening Ceremony (all white ). However, I do understand activism and it’s important to note the protests. I was not at any of the events because I was away at a disability conference in Lancster but I kept in touch through social media. I suspect, in my heart of hearts, the memory of the hurt from 2012 still rankles .
Last Sunday, I woke up to news on Malaysian social media that three Paralympics gold medals had been won at Rio. As a disabled woman with Malaysian roots, I felt very proud. This was a first – Malaysia doesn’t usually feature much in the Paralympics (or the Olympics).
However, it’s a different environment here in the UK (where the Paralympics is being broadcast on Channel 4, with its visually spectacular, slickly produced, and controversial trailer, We’re the Superhumans). Disabled activists, such as the group, Disabled People Against Cuts (DPAC) used the publicity generated by the Rio Paralympics to draw attention to the “disproportionate impact of austerity” on disabled people in the UK.
They planned a week of action; Rights Not Games, to draw attention to the cumulative impact of the cuts imposed by austerity. The intention was not to oppose the Games or criticise the British Paralympians, but to highlight the contrast in funding for the Paralympics with the benefit cuts and independent living support for disabled people.
Last 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.”
(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 email@example.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.
Last Wednesday, I was with a group of protestors at the ‘Me Before You’ premiere to show our anger about the film with its dangerous message : that death is preferable and more heroic/ romantic than life with a severe impairment. Many other reviews such as the one from the New York Times and from the Guardian– and other disabled folks have written/blogged/filmed /videod their disapproval so I won’t repeat them here. But here is one good critique of the film and other films that show that the disparity of what is deemed tragic (in suicide) for non disabled is brave, right and understandable for disabled people.
At the protest, I caught that exchange between Liz Carr and Jo Jo Moyes on my smartphone, the sound here is not very good but Channel 4 used it and added subtitles and footage from elsewhere.
Jo Jo Moyes asked Liz if she had read the book or seen the movie. (Liz replied that she had.) Now I did get a copy distributed while I was in the ‘crip pen’ (an area cordoned off just for wheelchair users) so I thought I would read the book before airing my views. I refuse to have to pay to see the film though.
It is a British romance via Hollywood. It has tinges of The Diary of Bridget Jones – the feckless, impoverished woman with the rich, powerful, rude and surly male lead. Except in this case Emilia Clarke plays Louisa Clark who lives in a rural area whose main skills seem to be making tea and toasting teacakes and he is Will Traynor who is a quadriplegic. She is vehement that she cannot clean ‘wipe bottoms’ and any of the mucky jobs, she’s had an idea from the care her grandfather needs but she want the money so she has no choice. Here is my first objection – the underlying idea of the ‘messiness of care’ and before she falls in love with Will Traynor, she calls it the worst job in the world. From what I can see, she had an easy job, she could have spend the time reading or watching television or doing Facebook. Nope, she irritates Will. She makes a terrible personal assistant /caretaker. She does not know her rights as a worker – how many hours does she work? She can drive but she doesn’t have a car, she uses buses. She has no aspirations, she answers ‘I don’t know. I have never thought about it.’ when he asks her what she wants from her life. So shes like an empty page for him to fill, to teach, so he does – gets her to watch a foreign film with subtitles and takes her to a concert, to a posh wedding and pays for their holiday. Mills and Boons stuff. (Am I allowed to question how she is able to research for holidays on the world wide web but she can’t do other things useful online?)
So he’s the macho man before his accident – he says
‘I loved my job, my travels, the things I was. I loved being a physical person. I liked riding on my motorbike, hurling myself off buildings. I like crushing people in business deals. I liked having sex. Lots of sex. I led a big life.(p.426).
if he was such a successful man – how come he is still living with his parents? Why isn’t he in London where there is much more happening? Doesn’t he have money to buy/ adapt any accommodation? Why is he allowing his mother to hire staff for him? ( I can see that they might be breaking labour law by not giving Lou more breaks) So he was a banker – one of those who screwed up our economy and he would have had no qualms at voting to cut benefits. His accident happened 2 years ago, he had so much time to brood why hasn’t he been on the internet to see the possibilities? if he knows about Dignitas. Why is he such a failure – of course he is in mental distress and mourning for his past wasteful and harmful self but surely he would have seen that there are opportunities, he can still be a banker and screw people. Surely he has his own income with the insurance money and does not have to rely on anybody. And oh yes, no sex? Okay I can understand that maybe he can’t have penetrative sex but he has a playmate and sex does not have to be penetrative. And how come he calls her Clark and not Lou? is this a public school thing? Remember he likes ‘crushing people in business deals’? Disability has not made him any more sympathetic to weakness or vulnerability.
For romance, I think there is so much more in Jane Eyre – similar theme, in the end Jane takes care of Rochester and it was on her terms. For all his faults, he didn’t go into a deep decline and suicide. But they are poles apart.
My criticism is that Jo Jo Moyes did not really craft her story – there are so many holes in the story. I don’t understand why people were going on about tissues needed. My inclination is to conclude that he killed himself because he had so much disablism inbred in him (his mother does not seem to be particularly warm maternal type) that he could never live with disability – he hates us. He will not settle for Lou because he cannot allow himself – I think he doesn’t see her as his equal.
And it is romantic for some women to dream that a man will take them out of the drudgery of poverty and the chocolatey coating of love without responsibility. He sails into the sunset with Dignitas and she gets the horizon of possibility with the legacy.
What does the reader/cinema goer take away? Girls, find yourself a rich disabled man who is suicidal and you might end up with a jackpot – you won’t even need to fuck him. Disabled people – get this ‘ its a far far better thing to do’ …than to stick around, your life is over, give the ones you love a chance to have the type of life you can never have. And this is for the Western audience, your life is not worth living
So, if the movie isn’t about them getting it on or Will’s triumph over adversity, what is the point of the movie?
Will is a plot device.
The book was never about Will. The story is about Lou and how Will’s influence changes her life. Lou fails to show Will the joy that can still be had in the world, even if you find love, because you are dealing with some sort of disability.
If I am cynical, that’s the target audience, women who still dreams of being rescued by knights on white horses, Cindrella type of fairy tales. That’s who Jo Jo Moyes expects to buy her book, and judging from the fact it is a best seller, she’s right. And this is why she took all the ‘messy’ parts off and Lou does not have to deal with those. Or that there is a question of a employment relationship here? Its a romance on the Mills and Boons formula. Forget feminism. It wouldn’t work if Will is a disabled woman! I am all for escapism but this is sloppy writing.
I saw the Thai advert for for this film, so there in South East Asia, without the filter of disability rights, the communities there will conclude that disabled lives are burdensome and look at the romance – forget romance, you should top yourself. That is a sobering thought.
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.
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.
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.
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.
As I m preparing to go travelling to NYC next month, I thought it might be useful to write down the process of preparation.
First important task – find an accessible hotel room. Book it -it does not matter if you do not use it but you have to have somewhere to stay. You can continue your search after you booked – unless you put in a fixed unchangeable price (like using Priceline.com). Usually you can cancel up till the day before your booked date.
get your plane ticket – shop around but if you re a wheelchair user like me, do not go for the cheapest. Best to get a direct flight if possible unless you need a break from a very long haul. You want to try to avoid being you and your wheelchair being moved unnecessarily – the more you get hauled, the more likely you (and wheelchair) would get damaged. Its worth the peace of mind to pay a bit more for better customer service. No good arriving totally stressed or having your wheelchair out of action!
pack lightly, enough to have 3 changes of clothes (you can always buy what you need there). Remember that you have to bring your equipment with you, whatever it might be. I try to carry everything on my wheelchair but these need preparing –
wheelchair – get it serviced before you leave. Look up a place for it to be repaired if it gets damaged.
battery charger – if you re going over to US or Canada (or Japan) you will need a dual voltage charger
adaptors for everything else that needs charging (a multi socket might be useful if you have more than one appliance that needs charging, there might be only one electrical socket in your hotel room)
make sure you have enough plastic as in alternative for money but you need to have some cash in the right currency anyway
get travel/medical insurance to be on the safe side and give all pre existing conditions because it can become void if you didnt declare (it can cost a lot to repatriate – especially from the USA)
take some emergency snacks with you if you have dietary needs eg. diabetes or allergy to gluten
Check with your service provider for roaming charges. It might be cheaper to get a sim card when you get there.
This is a very windy Lunar New Year here in London. I stayed snug in the flat and have not ventured out even to empty the rubbish. I do not miss the fireworks and definitely not the firecrackers. I missed having my family about but tha