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.
On Friday 11th September we rallied outside the Houses of Parliament against Rob Marris Private Assisted Dying Bill . Emotions ran high on both sides of the barriers – those for the Bill (Dignity in Death) and those against the Bill (Not Dead Yet UK). There was quite a bit of chanting but the most winning feature was the big statue of the judge with a needle.
My favourite chant suggested by Bob Findlay was – ‘Choice for some, a loaded gun!’ , ‘Not to die, Assistance to live’
There were quite a number of media people and photographers there.
This is the only article where they actually feature disabled people – most of the media suggests that religious campaigners led the opposition to the Assisted Suicide Bill and our role is being erased, and the enormous amount of campaigning work by disabled activists like Liz Carr, Jane Campbell etc is let out of the accounts
In Coventry the next day, I went to support #RefugeesWelcome rally at Broadgate with my friend Sabir Zazai, the director at Coventry Refugee and Migrant Centre. He introduced me to Syrian refugees now settling in Coventry, like the Ayo family.
Hassan Ayo, an agricultural engineer and human rights trainer, and his wife Fatmah Mustapha, a teacher, have won the refugee lottery. They are two of just 250 Syrians refugees settled by the U.K. so far this year, though the country has pledged to resettle 1,000 Syrians by Christmas.
They are also heartbroken and bitter.
Their admittance to the U.K. came too late for their 14-year-old daughter Sozdar. She died in Turkey on Dec. 4, 2014, just seven days after the United Nations High Commissioner for Refugees confirmed the U.K. had accepted their resettlement application.
“I didn’t lose my daughter in a war. I lost her in Turkey because they refused to treat her,” said Mustapha, 42, angrily.
I was invited by Cap Viaggi and Beyond Healthcare to pay them a visit in Florence where they wanted to try out a tour focused on tourists with health and/or access issues. I was the only wheelchair user, the other members of the group were from other European countries representing senior citizens. Our help was needed, they said, to design the tour and explore possibilities. The three days were available for getting away, so I agreed, intriqued as much as anything else. I had not realised how warm it would be at this time of the year.
I was met at the airport by the lovely Ciara with an accessible van with driver and our hosts and the staff were as warm as the temperature.
The hotel was Best Western Grand Hotel Adriatico, well centrally located with automatic doors and I had an accessible room, well, accessible to a certain degree. The shower was a boxed in area with no grab bars for support or side transfer possibilities from wheelchair. It did have a bidet! Ciara did learn about the logistics of acessibility with me – that having the right equipment is not all that is required but it depends on the access needs of the individual and having them at the right place. Having a personal care assistant is not always the answer either, the structure has to have sufficient space to allow for a second person to support as well….
We had great food (antipasti and fantastic beef) and local wine (Cianti) from the hotel restaurant after introductions from our hosts. They explained their purpose was to offer a worry free holiday for people with health issues, for eg. medical reasons that would prohibit time away from home as a result of missed medications or health conditions needing constant attention like monitoring blood tests. We had a local doctor there who would facilitate care needed. What they would like to offer is a customised package where you can have exclusive visits to the cathedral or a concert. It sounded like the possibility of doing the bucket list in Florence! I did point out that travellers would not like to be called patients even if they have medical needs, something everybody agreed upon. Also the need for accessibility. At the dinner, I sat opposite the very charming Fabio Cacioli who put me to shame by speaking really good English after only having studied it for 3 years.
After breakfast the next day, we drove to a fantastic new and accessible winery belonging to the Antinori family. We had a film on the greatness of the family and then a tour of the cellar and the wine making process. It was gleamingly modern, but still awesome in the cathedral like dimensions of the cellars.
We had some splendid wine tastings and a great lunch at the restaurant there, we were certainly well fed. No spag bog in sight, not in Tuscany apparently.
After heading back to the hotel and two hours rest, we had a guided tour of the city where the history and some of the architecture was explained. But it was a very hot day to be traisping round the city, even if it is such an impressive city! I ve many photos of our walk here but legend has it that if we rub the nose of this pig we shall return! I wouldnt be then, because I could’nt reach it.
While the route chosen was more or less accessible albeit cobbley, I did remark that most of the shops had at least one step to them, which was good for my wallet because even as I was curious at the beautiful wares on display in the shop fronts, I couldnt get in! thus saving me from emptying it.
That evening we were at Harrys for dinner. That was truly a culinary experience – I ‘ve eaten at many places but here we had stuffed corgette flowers with potatoes, Tuscan tomato and bread soup and organic rabbit! I cannot get over the simplicty and the sheer deliciousness of the pappa alla pomodoro.
The next day was the last day, we had a debriefing with our hosts. We made a few suggestions stressing on the need for access, that every person old or young is different and might want different itineraries. We also said that a ball park figure on the costs of such a package trip would be useful, each customised item would of course add on to total costs. Older tourists have similar needs to disabled travellers but they might not have the same requirements or need level access such as wheelchair users. We had not even began on other impairments or those access needs (for blind people for example)
My suggestion would be that they have a few scooters or wheelchairs for those who might be able to walk but not great distances and need places to rest and sit. Some sort of access guide to the city of Florence would be useful as to gauge as whether it s feasible for a visit.
Ciara was mindful of my shop inaccessibility remark and took me to the local supermarket where the staff promptly laid out a ramp as well as the restaurant across the street. Well, perhaps I should have asked at the Gucci shop!
The next day we went full into the first day of the conference with Dan Crow as keynote speaker on How Songkick is using Technology to Change Live Music.
Wednesday became even more exciting when I scooted to Whitehall to join the other anti austerity campaigners for a protest against budget cuts Balls to the Budget and then scuttled back to Covent Garden in time for lunch and to chair a session at the conference. Some friends were arrested. The two parts of my world seem very distant but yet within 10 minutes walk from each other. But my exhibition was on protests in austerity! not so remote after all.
I so wanted to stay for the Art that Makes itself book launch by Paul and Daniel Brown – Brown & Son because I saw the recording of the talk they gave by Watermans – A symposium supported by the Computer Arts Society addressing topics relating to generative art and its collective histories. Here is a very interesting interview too. But I had a union meeting to get to.
Saturday had a different tempo when I joined Petra Kuppers for a meander jointly lead by the wonderful Stephanie Heit (from the US), in the company of Anna Hickey-Moody , her brother visiting from Australia, Andy, and fellow Scrabble player, Antje Lindenmeyer, lecturer from Warwick University!
Saturday July 11th, 2-5 South Bank River Meander, starting at Adopting Britain exhibit, ending at Tate Modern.
Walk along the river with us, and let’s find our hollows, halls, and underpasses. With optional refreshments at Gabriel’s Wharf or the British Film Institute (whatever your flavors of escape). We met at 2 in the Adopting Britain exhibit, Spirit Level at Royal Festival Hall, about immigration and the UK
so here we are at the start at the South Bank where we introduced ourselves and think about drifting and be conscious of the water and think … I think the week has drained me of the ability to think…I wanted to drink and have an ice cream…
here was my tweet:
Floating with the jetsam of London South bank ers feeling the breeze with taste of mango frozen yoghurt on my tongue pic.twitter.com/Qn7xqGd53t
and here we are finishing at the Turbine Hall at the Tate Modern
The day was not finished – it ended splendidly with Zara’s lovely 30th birthday party and I got home after midnight, feeling definitely old and yet a little like Cindrella wondering ‘when was the last tube home on the Jubilee line?’!
Lianna at Transfort for All asked me if I was willing to be interviewed about my experiences of out of action lifts at Tube stations in London one evening – interview to be about 7am the next morning. I gulped and said yes – its a bit early! here is the article in the Evening Standard by Joe Watts. Photos were taken later in the afternoon by Alex Lentati.
my bit –
‘They don’t realise importance of making stations accessible’
Eleanor Lisney, a wheelchair user who lives in North Greenwich, has had problems with lifts three times in the last year.
The worst incident occurred at Westminster. She said: “It was more frightening because it was unexpected. My chair was low on battery and I was scared that I may not have enough power to get home.
“I can’t just trundle off to Waterloo and it’s very hard to get a taxi. You could become stuck.
“Luckily a friend went in and found a member of staff, who took me around a back way to a lift that was only used by workers.”
Ms Lisney, 56, added: “The London Bridge lift for the Jubilee Line is closed until August. It’s really annoying because I like going to Borough Market.”
Lisney, who is studying for her PhD, said: “It feels like sometimes they don’t realise the importance of making the Tube accessible.
“It’s hard enough that so many stations are not step-free. But when the accessible ones are also put out of action it makes life very difficult.”