Mission Impossible Malaysia

Your mission, should you choose to accept it:

Find a wheelchair friendly hotel in KL

Yeah, you’d think it would be easy right?

WRONG

After almost 21 years overseas I moved back to the UK at the end of last month. But I needed a few nights in a hotel after I left my apartment before flying out for good so I could tidy up any loose ends. So what better way to spend it than in 4* or 5* luxury.

But it took me more than month of searching and endless emails asking for photos of so-called accessible rooms to make a decision.

The hunt for hotel heaven began way back in January when I tried the Intercontinental. It was where I first stayed when I moved to KL in November 2005. It was the Nikko then but it seemed fitting to end my time in Malaysia where it all began.

I emailed asking for pictures of their disabled-friendly room. This came back:

I was not impressed (railings AGAIN) and moved swiftly along…

Next on the list: Traders. Nice view of the Twin Towers, great pool and bar.

 

Something here obviously got me excited, though looking at these pictures now I’m not sure why. But I was sufficiently interested to visit in person.

But glass walls prevented me from even getting close to either shower or toilet. Had to scratch that too.

Third on my list: Hilton Doubletree. It’s in sight of my home. What could possibly go wrong?

I emailed the hotel. Could they put in some additional equipment (like extra railings or a commode shower chair?)

Yes they could for the shower chair, including a photo of the same chair I had at home.

showerchairhilton

Finally I was getting somewhere.

But what about a commode for the toilet?

Ma’af (sorry) ma’am, tak boleh. (we can’t)

So three strikes, but I wasn’t prepared to quite say out. Just moving on again.

Early February was the Renaissance

The toilet was passable, but like the Intercon – the shower area offered a micro seat and…. join the chorus…. not enough railings. Not really any railings of use. And this was the hotel’s newly renovated disabled friendly room.

When I pointed out I could not stand and the installed railing was too high and too far away from the seat to be of use, the hotel did offer me a chair to be closer to it. But still missing the point of the railing being too high.

I didn’t dismiss it but it was not 100%. There was still time to check more.

But I was getting desperate. I’d booked the shippers, had my flight and cancelled the satellite tv.

Where was I going to stay? Surely it couldn’t be that hard?

In quick succession I contacted the NovotelPullmanG Tower, and the Mandarin hotels.

It wasn’t good.

The showers, clockwise from top left:

Common thread: Not enough railings. What about the toilets?

L-R: Novotel, Pullman, Mandarin and G Tower.

Common thread: Not enough railings (again) Sigh (again)

I dismissed the Novotel straight away, the whole bathroom space being too small. Ditto G Tower and The Pullman, even though their toilet did have two railings. Their shower area however did not look particularly accessible so dismissed that option. So my final option of the four was the Mandarin. I emailed with suggested pictures of what would work for me, but they couldn’t help.

Where would I stay? Time was running out…

This wasn’t sleepless in Seattle. More bedless in K-helL….

Surely there was a room in the city that could meet my needs?

The Ritz to the rescue

(aka there is a God)

I’d been speaking to Radhika, the Reservations manager, since mid February. Their facilities weren’t perfect but they had a toilet with two railings and promised me a shower chair – which was really a commode but I could live with that.

We’d been playing email tag trying to find a solution. Then I had a moment of inspiration. Could Hilton Doubletrees loan their shower chair to the Ritz?

Hotels might be rivals for guests but inter-hotel hospitality? Surely can? Malaysia Boleh, (Malaysia can) as residents of Malaysia are so frequently told.

Sorry tak boleh. No. Malaysia Cannot.

The Hilton politely declined.

I booked the Ritz anyway. We’d figure it out. Time was up.

When I finally checked in and got to my room disaster loomed. The two railings either side of the loo were too far apart. Standing up? Tak boleh.

Oh bol@**#!!

Ok lets use the commode for what it’s meant to used for and we’ll switch it round for the shower in the morning.

I slept on it and the next day had another idea. Could, would, the hotel buy a proper shower chair like the one the Hilton and I had?

After a bit of checking with the boss Radhika came back to me. Yes we can! One chair safely delivered while I celebrated my birthday with some friends nearby.

So five days of being pampered by the staff and the wonderful Butler service ladies (Jelena, Abigail, Amy and Sin Yee) and I checked out with a tear in my eye.

jelenaabigail.jpg

Farewell Malaysia

farewell

Next stop London.

 

 

Disabled in… Kenya

Remember the piece I did about Wheelchairs for Kids in Australia?

Here’s why they do itchdf

Nobody deserves to be disabled. None of us came into this world wanting to face a lifetime of difficulty, discrimination and hardship.

Yet like just about everything else in life WHERE you are born determines how you might lead it.

When I arrive at the Compassionate Hands for the Disabled Foundation for a moment I think we have taken a wrong turn. Facing me is a collection of ramshackle tin huts, a dirt compound and nothing which says ‘residential school for the disabled’.

But greeted by the smiling face of director Anne Njeri, I realise this is no wrong turn and this is my introduction into life for many disabled kids in Kenya.

Half a dozen children wait patiently under the shade of a corrugated iron awning. All are sitting in wheelchairs donated by Australian charity Wheelchairs for Kids  (WFK) – the organisation that has indirectly introduced me CHDF.

But there’s no excited chatter of youngsters waiting the arrival of an overseas visitor. These children are all profoundly disabled, incapable of regular interaction with others and all are either orphans or have been abandoned by their families for not being ‘normal’.

CHDF in Ruai, on the outskirts of Nairobi is home to 86 children, most of whom have cerebral palsy. Some are autistic, others have hydrocephaly or Down’s syndrome. There are more still with less complicated disabilities: loss of hearing and loss of sight.

ruai

Anne opened the centre eight years ago. A former journalist with a local radio station, she was disturbed by stories of disabled children being burned or sexually abused and being unable to speak out.

“In my mind I wanted a day care centre for people with disabilities. But after a week there were 15 kids [left] and no one to pick them up.”

Her empathy is understandable when you learn she was disabled once herself.

Born disabled

Born with a leg impairment – she believes resulting from a fall her mother had while pregnant – Anne was unable to walk until she was eight years old. Her condition came to the attention of a wealthy benefactor, who paid for surgery to correct the disability and fund her education.

“Attitudes towards disability in Kenya are not that good and that is why we have so many children who have been abandoned. They’re seen as a curse, so parents throw them away,” Anne tells me.

“We want the community to understand that disability is not a life sentence.”

But ingrained cultural beliefs are hard to break. Members of the nomadic Maasai tribe are known to leave a disabled infant or child for the wildlife to take, believing the child and they have been cursed.

Inside CHDF’s facility children are separated into groups, divided by disability. There’s a quiet room for the autistic children to practice how to be calm. One child seems lost as he sways back and forth manically rubbing his hands.

In other sections children play simple games matching coloured shapes, or practice making beaded jewellery. Therapists have noticed the repetitive nature of threading the beads onto wire helps the children concentrate.

Wheelchair deliveries

Life has improved though for many of the children with the delivery of specially made wheelchairs brought from WFK in Australia, through a coordinated programme facilitated by WorldVision and a local charity Bethany Kids.

Prior to their arrival each child had to be physically moved by workers at the home.

“It was so hectic. The staff often ended up with back problems from carrying the children. We couldn’t keep them,” said Anne.

“The wheelchairs have totally changed the lives of the children. They can now sit comfortably in the right position. They don’t get fatigued and they can move independently.”

It’s hoped WorldVision can arrange the delivery of more chairs from WFK and other providers so that all the centre’s children can benefit.

It’s a similar story 50 kilometres away in Thika at the Joytown primary school, also for disabled children.

thikakids

I’m shown round this facility by three members of another Kenyan aid organisation called PEK Care International – PEK meaning People Endeavouring Kusaidia. Kusaidia being the Swahili word for ‘to help’.

PEK’s existence also came about through fateful serendipity. Its chairman Paul Kirika – a Kenyan expatriate living in Perth, Australia – lost the lower part of one leg following a car accident.

Visiting his native Loitokitok on the slopes of Mount Kilimanjaro afterwards, he saw disabled facilities for those in the region were spartan at best, and subsequently donated his wheelchair to a woman he met at the local church, who’d had to be physically carried to the service.

By the end of his stay he’d received requests for four more and soon requests were flowing in.

“It just skyrocketed,” said Paul. “I’ve got adults wanting to use the chairs. It’s overwhelming.”

PEK has shipped over 800 chairs to Kenya so far, with plans to send more. Paul is also in talks with the Nigerian government about doing a similar scheme.

In Thika, Joytown looks and feels more like a regular school. A sprawling layout of stone buildings is interspersed with playgrounds, a swimming pool and the school dormitories and wash block.

It’s the last day of term and the children here are excitedly waiting for their families to collect them.

Jane Happy is on the floor busy finessing her writing skills with her pencil firmly jammed between her big and second right toes. She scratches her head in thought as she marks out neat block capitals and numbers, putting my illegible writing to shame.

Another child eagerly greets me, trying to climb onto my chair to give me a hug. She’s too big for me to pick up.

hugs

Double amputee Boniface is proud to have come near the top of his class having missed a full year of school following the car accident which took his legs.

boniface1

He only gained access to a chair when he arrived at Joytown. Before then he was forced to move around on stumps using his hands.

Now fully mobile, he wants to be an engineer when he grows up and doesn’t see his disability as a hindrance to his goals.

Poor maternal care

More than 300 kids live at Joytown, all with similar problems to those in Ruai. A majority here also have cerebral palsy – the result of poor ante-natal care and/or lack of safe delivery practices.

PEK’s medical director Dr Steve Mutiso tells me more than 80% of deliveries in the Kilimanjaro area take place in the home or without qualified medical assistance, merely unskilled traditional birth attendants.

The lack of safe deliveries pushes the number of kids born with cerebral palsy to a much higher rate than the national average – up to 4 per 1000 live births.

“[There was] a ghastly practice of leaving children with cerebral palsy chained in the homestead.

“The few that survive a few years live a wretched life with their fate sealed to be killed by wild animals.”

PEK wants to encourage the development of better health care especially in remote areas, where nomadic lifestyles are prevalent and illiteracy rates are high.

And it hopes overseas donors interested in disabled care can help improve disabled lifestyles in the country.

They see the provision of wheelchairs to give mobility to children as a key part of that goal but better health services and training for traditional birth attendants would reduce the number of children born with disabilities.

While the general aim is to rehabilitate the children enough so they can lead independent productive lives, many are so intellectually disabled it’s hard to see them ever leaving the school environment.

Anne in Ruai already has one young adult aged 21. She says the home is his forever.

***********************************************************************

#If you want to help or find out more you can contact:

Anne Njeri at CHDF Kenya anne@chdfkenya.org

Paul Kirika, chairman of PEK Care International  paulkirikapek@gmail.com

Or you can take a look at WorldVision Kenya and Bethany Kids to see some of the other work that’s being done to help the disabled in Kenya

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Meanwhile… Over in Kenya

A bit of adhoc consultancy

with rapid results

emirates

 

Sorry I haven’t been around for a while. My computer was stolen… grr… my fault. Computers can be replaced. But not all the info and pics on them 😦

So catching up, three weeks ago I took an Emirates flight from KL to Dubai then on to Nairobi to catch up with friends, do some safari and also a follow up on my blog about Wheelchairs for Kids.

I must give Emirates a shoutout for their attitude to disability. ALL their planes have aisle chairs meaning no-one has to physically drag you to the toilet, unlike Qatar Airways which only flies a B737 Doha-Nairobi and has nothing for the disabled. One reason I chose to stop flying them.

The cubicle inside the B777 even has railings in a USEFUL position.

Ultimate Airport Dubai however still needs some work in the disability department. Their wheelchairs were rubbish and the toilets just as bad as KLIA. That’s a work in progress.

Bit more on that later.

Anyway Jomo Kenyatta International airport’s had a bit of a makeover in the arrivals section. There was even a bright shiny disabled toilet sign. I hoped departures had similar. (It hadn’t)

But arriving somewhat tired and jet lagged at my hotel the Intercontinental in Nairobi, I have a ‘Houston, we have a problem’ moment. Would this be 20 shades of hotel hell again? See Having a Plan Errmm

I’ve stayed at the Intercon on three previous occasions without problem, but this time something seemed a little different. Overly tired from the journey maybe? Or my MS is a little worse? Who knows. But the shower seat suddenly looks daunting.

Intercon shower

Problem? Not enough railings.

Head Housekeeper Roselyn is called, and after a quick chat she returns a few hours later with…

inter chair

Again not perfect but pretty good and it serves me for the rest of my stay. So how’s that for rapid change?

Now for the other two hotels on my stay – Ol Tukai Lodge and Sarova Mara Game camp

The Ol Tukai sits in the shadows of Mount Kilimanjaro – Africa’s tallest mountain. Climate change means there’s just a sliver of snow and ice at the top now. Not sure when the pictures on the web were taken, or if it’s just the time of year, but this is August 2016.

kiliman

Overall Ol Tukai makes a great effort to be disabled friendly. There are ramps where they’re needed in the dining room and around the hotel.

There are two disabled friendly rooms. The one I was staying in makes a good attempt but is not quite there. The toilet suffers from lack of railings (again) and the shower could do with a better seat and changing the position of the railing that’s there. (Couldn’t work that out at all.)

ambo shower

But manager Kennedy Were was open to suggestions for improvement and I’m contacting him after I finish this.

If you do stay there it’s a beautiful spot to stop in and watch the elephants for a few days. Flamingoes have recently arrived at one of the shallow lakes too, and in greater numbers than at Lake Bogoria up north See my very first post

Now over in the Mara I stayed at the Sarova Mara Game Camp. I’d been there last year. It has just one disabled friendly room, and again it’s not perfect (Yep, you guessed it – not enough railings).

I’d made suggestions last year about how they could improve the facilities but nothing had changed. A conversation with the very Japanese sounding, but definitely Kenyan manager Kioko Musyoki brought a more positive response this time.

maraloo

Let’s hope they follow through. But I can’t complain; so pleased were they I had returned they made me a cake.

cake

So asante sana Sarova 🙂

Oh yeah, before I go, Dubai International Airports… a four hour layover on the way home to Malaysia in the ‘Special Handling’ zone leaves you abandoned in a space that is staffed by people with NO TRAINING in special handling people with disabilities.

I was dumped in a wheelchair made for either giants or the morbidly obese (or both) and left to my own devices when I asked to use the bathroom. A special meltdown ensued. Two untrained Filipina staff were rustled up and together we managed to work around the loo’s inadequacies. What was the problem? NOT enough #@^*§!! Railings. And the ones they had were a mile high and pretty useless if you were trying to stand up. (Cue two untrained special handling staff)

I should write a song, I’d make a fortune.

 

dubloo

The sink was rather annoying too. The direction of the tap’s spout meaning when it auto-turned on water just splashed over the rim soaking me. Improvements please Dubai airports. You’re touting yourselves to be great. Make that great for everyone.

 

Disabled in… government

Quick quiz

stairs

The stairway pictured here leads to:

A: Heaven

B: An open bank vault with $10 million inside

C: The disabled toilet

Sadly to neither A or B. Simply C

Feeling mad?

Disappointed?

Or just resigned?

I took this photo at a fairly new Malaysian government office block in Cyberjaya last week trying to collect a new visa.

Under Malaysian planning laws all new buildings are meant to have accessible facilities.

And indeed the Expat Service Centre did have a disabled loo (with all the vagaries of what meets Malaysia’s definition of acceptable as opposed to accessible)

Problem was the architects forgot about the ACCESS part!!!

Good job there were two burly security guards around to carry me up the steps.

And check out the vehicle entrance here. No lower section in the kerb way from the vehicle entrance either. Guess disabled people aren’t really welcome at all.

bikes.jpg

What kind of message does this send? Malaysia signed up to the  ‘Proclamation on the Full Participation and Equality of People with Disabilities in the Asia-Pacific Region’ in 1994.

It followed up with the ‘Persons with Disabilities Act’ in 2008 which was designed to iron out the inequalities between the able bodied and disabled community. But it hasn’t quite worked out that way.

Accessibility has got stuck in a quagmire of legislation between the Town and Country Planning act, the Street Drainage and Building Act which is interpreted under the Uniform Building Bylaws and then there’s an amendment which meant that new buildings have to meet the ‘Malaysian Standard Code of Practice on Access for Disabled Person’ and existing buildings have 3 years to comply or face fines.

BUT while the Malaysian Standard code of practice was introduced in 2003 buildings are NOT required to comply under the Uniform Building Bylaws.

So guess what happens with all this conflicting legislation?

Sweet FA.

At a MATEC 2014 science conference it was noted that understanding the concept of Universal Design, i.e. access for all type of society, was still low in Malaysia.

Yathink?

My report card reads: Should do better

 

 

 

 

 

 

 

If a picture paints a thousand words…

blueicon

Whaddya think of this logo?

Pretty cool right?

A disabled icon looking like someone in a wheelchair going places, not just some static body becalmed in the middle of a blue lagoon.

My cousin’s husband Simon just told me about this project Accessible Icon (He’s a graphic designer).

And if an icon is meant to represent something or someone or somewhere isn’t this a great place to start changing attitudes about the disabled?

We aren’t just people stranded in the middle of nowhere unable to do things without assistance.

We can and do get out the house, do the shopping, catch a plane, go places… (oooh scary prospect that one for some (other people) ).

If you’ve got five minutes take a look through the website. I’m not advocating defacing public signage, but what’s that saying about the beat of a butterfly’s wings on one side of the planet becomes a typhoon on the other?

 

 

Disabled In…Updates

It’s not the silly season just yet

HRHletter

So working my way through a bunch of post last week in my mail box and I was rather stunned to see a letter postmarked EIIR.

And then on closer inspection ‘Buckingham Palace.’

OMG!

A letter from the Royals.

I’d forgotten about the letter I’d handed over to one of the Royal staff at my Dad’s investiture. And I hadn’t really expected an answer.

But as my old boss at AP used to say: No ask-ie, no get-tie. So I asked and I got.

What did I ask? For William and Harry to support my blog on disability, given the work they do with disabled groups – Harry especially with Invictus Games.

I didn’t get quite what I asked. A polite: We can’t, because then we’d have to do it for every request.

So not quite By Royal Appointment just yet 😦

But that doesn’t mean Harry @KensingtonRoyal and William @DukeCambridgeUK can’t follow my blog on Twitter @tvsteph does it guys???

Back to Africa

Anyway as it’s holiday time, later this month I’m going back to Kenya – as I want to see some wildlife in the wild.

I won’t just be watching wildebeest on migration though, I’ll also be looking at what life is like for the  wheelchair bound there.

Remember my blog about Australian charity Wheelchairs For Kids?

I’m going to be looking at what it’s like to receive a wheelchair. I’ll be hooking up with Worldvision and hopefully Pek Care International to see their wheelchair distribution programmes.

And of course I’ll be taking a look at disabled facilities in some of the places I’ll be staying. Some will be brand new, others already tried and tested. Watch out for my reviews.

I also hope to catch up with Kenya’s MS Society chairman Kimani Kamau on what’s been happening with those guys since their inaugural meeting last year. If #MS is rare in Malaysia, it’s even rarer in Africa.

Doctors are only just starting to recognise the illness there. And with the price of medication so astronomical, treatment is probably out of reach for the vast majority of people.

It’s another potential Vitamin D link. Because most African skin is dark it can’t manufacture enough Vitamin D – thought to be linked in someway to the illness. I touched on that in my doco.

And finally…

Last update from me for now. The Star newspaper in Malaysia featured a nice piece about me and my adventures in a wheelchair and having MS. Hopefully it will help kick start my consultancy into action.

See ya back in August

 

 

 

And now for the hard part…

Starting my own business consultancy

bizcard

Life as a disabled person is endlessly challenging, so keeping a sense of humour and seeing the funny side – in a twisted kind of way – is a necessity.

How can you not see the irony when you approach reception desk for an appointment and the woman behind it says: “please take a seat” when you’ve just wheeled up in a chair.

I’ve been in a wheelchair now for more than two years, and ever since then I’ve been discovering endless hurdles to life stuck in a seat.

Gallows humour certainly helps.

You have been reading my blog, right?

I’ve always tried to offer suggestions as to how I think places could be improved (mostly toilets). Sometimes I get listened to, often I don’t.

Now though with my life as a tv journalist in the background for now, I’m taking a new direction. I’m not gonna give out free advice any more – I’ll tell you as a consultant.

I’ll still be in KL for now, but am happy to travel, as I know things ain’t perfect wherever I go.

My aim is to assess existing facilities, make recommendations for changes (if needed) and offer advice on where to find equipment as necessary.

In new buildings, or those under construction, I hope to hook in with the architects/designers before they make mistakes.

Certainly in KL I’m sure I’ll need to hook up with health & safety, and the fire department so I’m working on the nitty gritty right now. But that will be done in a few weeks, and then the really hard part:

Getting the first client.

Watch this space 🙂