independent living

Start at the beginning (1)

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

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

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

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

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

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

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

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

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

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

_{¹ref The Population of Malaysia 1974 http://www.cicred.org/Eng/Publications/pdf/c-c34.pdf}

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

#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.

Travel preparations to New York city

backpack with charger and laptop 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.

(to be cont.)

Being interviewed on out-of-action lifts at accessible London Tube stations

at Euston Station photo with permission from Alex Lentati

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.”

Read the rest at http://www.standard.co.uk/news/transport/disabled-and-parents-with-buggies-stranded-as-tube-lift-closures-soar-10299112.html