(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 that didnt last….
But my wonderful university friend, Yin, brought me some delicious food from her reunion meal with her family. I did not mind being a recluse, it was nice and I felt priviledged to have a warm bed and time to myself. I caught up on television series.
However I must say I really like the rendition of this version of new year melodies from Colour of Voices from Malaysia!
馬來西亞新晉 A Cappella 組合 Colour Of Voices (C.O.V) 送上他們第一支華語串燒賀年歌曲向大家拜個早年!
I was fortunate enough to be invited to chair a session at the University of Leeds ‘Developing Disability Rights in China: From Paper to Practice?’ jointly organised with China Vision and NUI Galway.
I’ve always been interested in disability news from China so I think this is a great opportunity to catch a glimpse into disability movement there and perspectives from Chinese activists and researchers. A heartfelt thank you to CDS, China Vision and NUI Galway for making it happen. I hope it will lead to more in a similar vein.
It was fascinating to listen to the Chinese experts speaking on the status of disability law in China and bringing in some test cases. I was particularly taken by Chen Bo’s talk on Mental Health Law in China with examples on recent law cases. He mentioned a woman whose family tried to get her sectioned because she refused a marriage! And I thought it was hard having mental health issues in this country. The problems of having an imposed ‘guardian’ /carer who might be working against your best interests and moving you into a hospital/psychiatric institution.
And on inclusive education, there are many obstacles and challenges to basic education said Ni Zhen and not much resonable adjustments to help with access to higher education. Disabled students still have to prove that they can achieve without support. He also said he thought that in the hierachy of impairments, it is those with physical impairments are at the top. It is the medical model (undoubtedly) which prevails.
I found it sobering that they rely so much on the UNCRPD – one of the speakers said it was like a bible. The CRPD does not have any jurusdiction on domestic law – I am unclear what bearing /jurisdiction the CRPD has on the government there. Especially in the light of the UN Enquiry into the rights of persons with disabilities here in the UK – see the research briefings.
Anna also arranged a lovely informal dinner the night before.
The sun is streaming in on this subdued Sunday morning. I am listening to some interview of Lord Hurd by BBC 2. I decided to start my Strasbourg blog. However, I am going to write only once a week -on Sundays, like the Sunday review!
Yin, my friend from London, is still asleep. I am waiting for her to get up so that we can have a stroll down the Citadelle Park and the canal. There is no baguette to be had on a Sunday morning and I made us scrambled eggs. It was fairly quiet and the travaux made some of the paths difficult to negotiate even with my power wheelchair. I told Yin how I used to come everyday after school with the kids.
The Citadelle Park is very much a part of the family memory to me – it gives me the sense of home as much as any other place in my home town. This was brought back to me in the last couple of months since I came back to live in Strasbourg in June, and at once I was invited to various things – it was the fete of l’ARES (Association des Résidents de l’Esplanade) – were celebrating their 40th anniversary. It was good to see old friends and neighbours and being welcomed back. I realised how much I missed the multi cultural environment – I went to the celebratory events with my Chilean Turkish and Mexican friends. We watched Iberian dancing, Laotian dancers, ate Alsatian merguez and drank Turkish tea etc. On the final night I went with Sarah, a black English teacher here from Houston and her friend who now lives in Italy. We had a kebab and missed out on the enormous cake specially made for the quartier.
We went to the Musée d’Art moderne et contemporain in the afternoon. We ended up in the lovely restaurant terrace overlooking the Pont Couvert in the Petite France where we had a coffee and a long chat. We couldn’t possibly miss the Petite France after that. I am glad I had my new Invacare Storm wheelchair to try out on the cobbled streets. It is four years old and second hand but was still a good bargain. I was going on happily along a pavement when it suddenly narrowed and when I got to the corner found it impossible to negotiate and had to backtrack. It was most frustrating but we got there and it is always great , to gape at the tourists. We wanted to stay for the Illumination de la Cathédrale and started over to the Cathedral Square but we were not ready for a meal and the lights were not going to come on until after 10 pm. We decided on a tarte flambé at the Square instead. We didnt make it to 10pm. as it was quite impossible to find an accessible toilet. We decided to go home and have an early night. Yin had an early plane to catch the next day.
Sunday, 20 – Getting ready for Berlin
Has another week gone already? Gosh! I spent this week preparing for the ICHIM conference. It is good to be in the editing team but there are many last minute details to work on. And since I have been to Malaysia ( will write about that later) there are so many things I have to sort out that I was not able to do before. I needed to get copyright for my own poster demo publication – I was really too late to do much. Poor Amaia – I could not fax her the copyright permission she needed till now. The copyright is also needed for putting a picture together with the abstract on Disability Culture: Quest for a Collective Identity. Tom Olin is travelling and I just got the email with the permission.
Yesterday, I went to the train station to buy my train ticket to Berlin and find out details about changing at Stuttgart. Took the tram downtown because it looked like rain. It was a long wait. However, the girl at the till look at all the possibilities and told me that there was no special tariff in Germany as there is in France. I had a discount until the border and that was it. And since we were only 5 mins away from the border, there wasn’t much point. The man who was to fix the transfer for disabled travellers told me that they can only do it once I have left because they couldn’t communicate in German so that the driver has to do it once we are on the way. This is a bit disconcerting, I’ll have to see if I can get a better response in Stuttgart.
I stopped off at Surcouf in Les Halles to check out adaptors and routers. The trouble with having different bits of computer from separate parts of the world is that they don’t all work together with different electricity output. Tim unthinkingly plugged in my cpu into the mains and there was immediately a sound that means a broken fuse at least. I really cannot afford to have to get another computer.
It is the same for my Quickie power wheelchair from the States. I needed a transformer (which Bill and Mary kindly brought me one over from Canada) and the thanks to Air France, the connections on the chair were loose. (I was a bit spooked out when the chair stopped dead next to the tram track on the ways home). It is a big heavy thing and charging with it was sometimes a challenge. I did not relish the few times when I found out that my chair was not charged up when I was dependent on it to get around. When I saw an ad for a second hand Invacare motorized wheelchair, I decided to get it as a back up. Of course it has a different charger again – all these take up more and more room.
Sunday 29th – Berlin!
It is raining in Berlin! According to the guide book, it rains a lot here. I wished I had packed my rain hat. The Art Otel that we are staying, supposedly 4 stars, is what I called minimal. There is no coffee maker in the room, no English language cable (lots of porn if you are willing to pay for it) and no swimming pool in the hotel. I did get an accessible room and the room is comfortable enough – there is a roll in roll out shower. However, the wardrobe is almost impossible to get open with a chair (not enough room) and even more of a serious problem, the door to the room depends on the ability to operate a swift turning of the knob. For a room supposedly accessible to a disabled person, I find this to be a serious design fault. I have not been able to negotiate opening the room door yet. And I am a wheelchair user not purportedly someone with a manually challenged. Luckily, my daughter, Naomi was with me.
The train journey from Strasbourg to Berlin went without too many hitches. I have never travelled much in Germany and was relieved to find that the train lifts were there as requested. All the personnel addressed Naomi instead of asking me – however, it could be because she spoke German whereas I did not. My daughter is quite stunning and I am not surprised to be overshadowed.
We were on the main street (Ku’ damm Strasse) yesterday and it was very pleasant. It was wide and gave a sense of being comfortable and spacious. Obviously the rich side of Berlin. We had coffee and strudel in a cafe/restaurant full of 1920’s pictures and ambience. We wandered about taking in the sights and ended up in a little sushi restaurant that was run by Vietnamese staff in a side street. All the items had the calorific content written on the menu. We were quite amused by that. It started raining and we caught a cab at the taxi stand. Taxis seem plentiful in Berlin. So far so good. Berlin seems like a place I can negotiate on my own. We are going to try the bus system to check out the Tiergarten Park today and maybe go to the Bauhaus Archives. Apparently the buses are accessible.
Every summer in July, the EVA London conference is held at the BCS in Covent Garden. It is an interesting international conference which is not too busy and you really get to meet and network with academics, practitioners and museum professionals.
I help with the PR and publicity side and it helps my academic identity as a phd student and opens a world that I might not otherwise have known! Here is where I had a presentation /exhibiition myself last year.
The last months of the year, November and December, are busy in the disability calendar. There is the Disability History Month and the International Day of Disabled People.
I was asked to speak at the Launch of UK Disability Month Evening session on 19th November, on the Representation of Disabled Women in Film, in partnership with the British Film Institute (BFI). A very short presentation – the clip below includes other discussions including John McDonnell.
see the UKDHM website for full reportage and the livestreamed videos
Day Conference Portrayal of Disability in Mainstream Moving Image Media: Then and Now
BFI in partnership with UK Disability History Month.
I wished I had more time to expand on the films I had chosen that portrayed disabled women in the mainstream film industry.
For the International Day of Disabled People, I was asked to speak for UKDHM in a panel ‘Now you see us – Disabled women talk about visibility, empowerment and equality in the workplace‘ at University College of London staff event. I was slightly surprised that no women mentioned the role that gender played in the workplace.
The barriers that women face going into the workplace are the same for disabled women. The challenges of confidence, of having to choose between career and making a home for family and motherhood and the whole question of insecurity are even more exacerbated for disabled women.
Many disabled women are not aware of the Social model of disability and do not understand the discriminating environment stacked against disabled people but see their impairments as personal lack which limit their opportunities.
As a consequence of speaking at UKDHM at the BFI, Ju Gosling asked if we could lead the discussion at the end of the Together 2015 Disability Film Festival. She also managed to get to show Margarita With a Straw , a Hindi movie about a young women finding herself and her sexuality , and Chocolate, a Thai film about an austistic girl who uses her martial arts to get back money from her mothers debtors for her chemotherapy. I went to some of the other films in the weekend program too. Great to meet other disabled film makers and see their work.