Woke up extra early and went to SJMC to consult a hematologist regarding my anemia. I have been breathless and feeling lethargic for a while now. It is no fun waking up after 12 hours of sleep feeling like I need another 12 hours more. At the same time, had the lump in the scrotum checked by a urologist. Apparently it is an infection of the epididymis caused by constant catheterisation. I am on a 2-week dose of Zinnat, an antibiotics, that hopefully will clear up the lump by then. He also scheduled me for a urodynamic testing to check on the pressure in my bladder.

In the 24 years since my spinal cord injury, I have never undergone any. UMMC had scheduled to urodynamic tests but both we called off - once because the doctor was away and the other because the lab was being renovated. These appointments are usually scheduled 6 months prior. Although the procedure is done free of charge at UMMC and costs RM1,500 at UMMC, I decided that I wanted to know if the pressure in my bladder is the cause of my renal failure and what can be done to prevent further damage.

After that, Wuan and I went all the way to the Palace of Golden Horse at Seri Kembangan for a buffet lunch with some good friends. One will be leaving Malaysia with his family in July. And then we drove all the way back to Damansara Mutiara for a meeting with the good people from the Malaysia Association of Standards Users at The Curve. We talked about the standards of accessibility which, although in existence since the last decade, are seldom adhered to by the local governments.

To sum it all up, I had to pull down my pants twice to have my testicles examined, drove all over Kuala Lumpur and Selangor to meet friends and make new friends, were extremely late for both appointments, and came back all fired up for no apparent reason and only fell asleep at 3am. It had been a tiring day but worth the effort.

I also have this one thing to say about SJMC. Although it is a hospital, there were no accessible parkings and I was made to circle the buildings twice before I found an empty standard-sized lot near to the entrance. The hospital management should really take note of this. They should not expect wheelchair users to park their cars at the open space which is a long distance from the entrance and down a steep slope. Of all places, I expect hospitals to be the most accessible place but this seldom the case. That is one of the reasons why I dislike going to hospitals.

After a few weeks of reprieve, itchy welts are beginning to appear on my arms and shoulders again. I hope this does not turn into a full-blown itch like before that needed anti-histamines. The doctor prescribed a 2-week supply of Claritin (Loratadine). If that does not work,I will revert back to Zyrtec (Cetirizine) which has worked quite well thus far.

AirAsia has finally launched the ambulift at the KLIA-LCCT after several months delay. The ambulift is to assist disabled people board and disembark from the aircraft. At the same time, the budget airline was reported to have said that another ambulift is based in the Kota Kinabalu International Airport. This is a good move on the airline’s part in moving towards making air travel more accessible for disabled people. For this, I would like to congratulate the Barrier-Free Environment and Accessible Transport Group (BEAT) for being able to convince AirAsia and its chief executive officer Dato’ Tony Fernandez that air travel should not be limited only for people who can walk.

While the ambulifts will ease one of the problems faced by disabled people flying with the airline, the cabin is still generally inaccessible, especially the toilets. No mention was made on whether all the aircrafts are equipped with aisle chairs as promised by Dato’ Fernandez. If not, BEAT must pursue this matter to ensure that disabled people will not face problems when they need to move around in the aircraft or use the toilet. The other matters that need to be looked into are indemnity forms, the RM12 charge for using the wheelchairs at the airport and proper handling of disabled persons and their wheelchairs. I believe some of those issues have been resolved. BEAT and AirAsia should come out and announce it publicly to prevent confusion and inconsistent imposition of policies by the airline’s staff.

Having said that, I would like to remind BEAT, especially Christine Lee and V. Murugeswaran who are leading the group, not to forget the purpose why the group was formed. Its main purpose was to advocate for accessible public transport which has been given scant attention of late. While they openly applaud the launching of the ambulifts, they seemed to have disregarded the fact that disabled people still do not have access to public transport to take them to the airport. What is the point of advocating for accessible air travel when disabled people cannot get to the airport? Not every disabled person can drive, afford to own a car or transfer into taxis.

BEAT should seriously consider reinitiating negotiations with RapidKL and related government ministries to ensure that the 100 RapidKL buses already fitted with ramps allow wheelchair users to use them. It is ironic that these buses with the wheelchair logos affixed to its exterior do not take wheelchair users at the moment because BEAT has refused to endorse the buses due to safety considerations. The ramps and wheelchair locking mechanisms were deemed unsuitable and non-functional. As far as I know, BEAT has not pursued this with RapidKL but prefer to concentrate most of its effort on AirAsia.

Disabled people like everyone else need access to public transport, namely buses and trains, for education, employment, medical appointments, social and religious functions, among others. While I agree that disabled people need to have access to air travel, BEAT should judiciously use its limited resources to advocate for an issue that will benefit the most people, not one that only a handful will be using. In my opinion, there must be a sense of priority and the priority now is public transport and not air travel.

Consider the following facts.
100 out of RapidKL’s 1000 buses are accessible = 10%
2 out of AirAsia’s 55 destinations are accessibe = 3.6%
The mode of transport does disabled people need to use more often

While BEAT has been generous with its applause for AirAsia, it has been very critical of RapidKL’s efforts to the extent of refusing to endorse the 100 buses. It simply does not make any sense. We have here 100 buses that will benefit all wheelchair users in the Klang Valley but BEAT prefers to ignore that fact and openly throw its support for AirAsia’s 2 ambulifts. BEAT’s logic in refusing to endorse those buses was because the ramps were too short and may cause wheelchairs to tip backwards. During discussions with RapidKL, the bus operator has informed BEAT that wheelchair users are only allowed to board the buses with the assistance of the bus drivers. That should reduce the risk of wheelchairs tipping backwards.

How dangerous can that be compared to carrying a disabled person up or down the flight of narrow plane stairs? Having been carried up not once but six times up such stairs, twice with Malaysia Airlines in 1999 when it was still flying into Subang International Airport and 4 times with AirAsia in 2007, I can attest to the recurring fear of being dropped or the ground crews slipping on the steps each time I was carried. The AirAsia ground crews, and Malaysia Airlines at that time, were neither properly trained in doing the two-man carry nor observed safety procedures when performing this task. Who will be held responsible should any mishap occur while being carried up or down the stairs?

News report stated that 40 disabled people attended the launching of the ambulift. The leaders of BEAT should ask themselves how many of those 40 disabled people fly frequently and which mode of transport they need most. Were they able to use public transport to get to the airport? If not, why? Bread and butter issues of disabled people should be resolved first before anything else. That should be the priority. When disabled people cannot even get into public buses to move around conveniently around Kuala Lumpur, why is BEAT committing so much of its limited resources into advocating for accessibility in air travel?

BERNAMA
April 12, 2008 16:58 PM

Airasia Provides Ambulift Facility For Disabled Passengers

SEPANG, April 12 (Bernama) — To provide accessibility for disabled passengers, AirAsia Bhd has placed an ambulift at the low cost carrier terminal (LCCT) here and another in Kota Kinabalu.

Group chief executive officer Datuk Tony Fernandes said Saturday the facility will provide better mobility and comfort for the airline’s disabled passengers.

Previously, disabled passengers were physically carried by AirAsia’s ground staff to board the aircraft, Fernandes told reporters after the launch of the facility at the LCCT here.

According to him, installation of the facility at the two airports cost RM1.3 million, including training for the staff.

The airline is discussing with the Kuching Airport authority to place an ambulift there.

It is also looking at placing ambulifts in other airports such as Penang, Jakarta and Bangkok.

Up to four disabled passengers are allowed on a flight, and two of them can be quadriplegics.

AirAsia, said Fernandes, is in talks with Malaysia Airports Holdings Bhd to provide free aerobridge use for disabled passengers at airports that do not have ambulifts.

– BERNAMA

The Star Online
Sunday April 13, 2008
Ambulift launched at LCCT

AirAsia launches ambulift for disabled passengers

SEPANG: AirAsia launched its first ambulift at the Low Cost Carrier Terminal (LCCT) here to allow disabled passengers to board the aircraft instead of being physically carried into the plane by AirAsia workers.

The airline bought two ambulifts, one to be placed at LCCT and another one at Kota Kinabalu airport.

Ambulift is a lift that is attached to the back of a van to lift passengers from the aircraft to the ground so they do not have to use the steps.
Disabled-friendly move: An AirAsia flight attendant posing with disabled people in front of the new ambulift at the LCCT at the KL International Airport on Saturday.

Nine months ago, members of the Barrier-Free Environment and Accessible Transport Group (BEAT) representing the disabled community gathered at the LCCT to protest the carrier’s “discriminatory” policy and demanded disabled-friendly services by AirAsia.

They asked the airline to provide an ambulift to allow disabled passengers to board the aircraft instead of being physically carried into the plane by AirAsia workers.

Former Transport Minister Datuk Seri Chan Kong Choy then ordered Malaysia Airports Berhad and AirAsia to solve the problem.

AirAsia chief executive officer Datuk Tony Fernandez said providing the ambulift was only one part of their initiatives to be disabled-friendly.

He said they were also in talks with Malaysia Airports to provide free aerobridge usage at airports that do not have ambulifts and give staff hands-on training by engaging those from the disabled community.

“We will also enhance our services and accessibility where possible and we hope to set the example for other LCCTs and airlines to work towards an improved environment for our disabled friends,” he said.

However, he hoped Malaysia Airports would improve airport facilities and provide level walkways and designated car parks.

Fernandez also said that the AirAsia’s A320 aircraft could only take a maximum of four disabled guests per flight and two of the seats could accommodate quadriplegic flyers.

BEAT coordinator Christina Lee welcomed AirAsia’s move to introduce disability equality training for the cabin crew and staff.

“This will give them a better understanding of “disability” issues as well as tips on how to relate to and assist disabled passengers,” she said.

AirAsia’s Press Release:
Greater Comfort and Accessibility for AirAsia Disabled Friends

Airline Slammed on Deaf Policy

By ROD McGUIRK – 20 hours ago

CANBERRA, Australia (AP) — Ludwig van Beethoven would not be allowed to fly alone on a Tiger Airways flight if he were alive today because of the Singapore-owned airline’s purported policy on deaf passengers, a government minister said Friday.

Bill Shorten used the example of Beethoven — who famously continued composing until his death in 1827 despite losing his hearing — in condemning the treatment of deaf passengers by the Australian subsidiary of Singapore-based budget carrier Tiger Airways.

The policy bars deaf passengers from flying unless accompanied by a fare-paying adult care provider, a Tiger Airways reservations agent who said she goes by only one name, Jinky, told The Associated Press.

But airline spokesman Matt Hobbs denied that the airline had such a policy, and said he was investigating why air crews and call center staff in the Philippines were telling passengers otherwise.

Shorten, Australia’s parliamentary secretary for disabilities and children’s services, said he telephoned the airline Friday to tell them that barring deaf people from flying alone was wrong.

“Under this, Beethoven would never have been able to catch a plane” on his own, Shorten told Sky Television. “Just because people are deaf doesn’t mean that they’re stupid.”

A group of four deaf adults has lodged a complaint with the Australian government’s anti-discrimination watchdog agency after a representative of Tiger Airways Australia told them last month that they could not make an interstate flight without a care provider who could hear, the Herald Sun newspaper reported Friday.

The group was eventually permitted to take their seats on the March 4 flight but a flight attendant told them they would not be allowed to fly alone again on the airline, the newspaper said.

Hobbs, Tiger Airways Australia’s head of corporate communications, said the cabin manager had written the four a note saying: “In future, so you know, you’ll need to travel with a carer for safety reasons.”

“We’re clarifying with all staff that deaf people do not require a carer to travel with them,” Hobbs said, adding that he could not explain the widespread misunderstanding within his company.

“We are apologetic and very sorry that the people involved in this feel in any way that they’ve been discriminated against or upset by this in any way,” he said.

Hobbs said his company’s sister airline, Tiger Airways Singapore, had changed its policy that once required deaf passengers to be accompanied by a care provider.

The Australian subsidiary of Singapore-based Tiger Aviation entered the Australian domestic aviation market last November. Its Australian competitors allow deaf passengers to fly alone.

Click on image for larger version.

Click on image for larger version.

Click on image for larger version.

New Straits Times
BLOGS OF COURAGE

When Daren Lee started to blog about his son’s epileptic condition in 2006, little did he realise the impact it would create. The blog inspired many, and gave new hope to others.

BRINGING HOPE AND INSPIRATION TO OTHERS

By Cindy Koh

IT all started out with curiosity. Daren Lee began fiddling with blogging sometime in September 2006, when he wanted to start a blog for his church’s youth service. He subsequently got hooked and went on to start to blog about his older son, Nathanael’s epileptic condition.

The blog, www.darentiff.blogspot.com, serves as the main point of connection for friends and family members to get Nathanael’s updates and progress in his medical treatment. It contains details on how the four-year-old was diagnosed with infantile spasm after going through a series of tests at a local private hospital since he was a newborn, how he started treatment (medical and physical therapies) at a public hospital, and the family’s struggles, joys and courage.

It has been a stressful journey for this father of two and his wife Tiffany Tang, as they juggle Nathanael’s condition, work and other responsibilities which can deem the blogging routine challenging. But what kept him and Tiffany (she helps update the site as well) going was the people’s responses to the blog.

Darentiff.blogspot gets from 50 to 100 hits per day and this speaks volumes for Lee, as it is educating and creating awareness of epilepsy, which is often a misunderstood neurological disorder.

According to a World Health Organization report for the Southeast Asia region, at the global level, it is estimated that there are nearly 50 million persons suffering from epilepsy, of which three-fourths or 35 million are in developing countries. Many people who have family members with such disease are still reluctant to talk about it, as it is seen as a curse or an incurable evil disease.

“The responses have thus far been very encouraging and through the site, the respondents learned, rejoiced and were inspired or ministered to,” Lee says. The family has also made friends online that led to five families from different race and religion forming a support group of sorts. But most rewarding of all, Lee says, is that the family has grown closer through blogging and sharing of information.

The blog has also ignited interest from international viewers, one of whom is a Swedish professional who asked if he could get a video recording of a therapy – Snoezelen – that Nathanael is going through. (It is a room equipped with special lights and music to stimulate senses in the child.)

In addition to that, Lee was invited to write about fatherhood for a Singapore family magazine after the editor visited the blog.

Lee also found out that Malaysians are a compassionate lot. After putting up a posting on Nathanael’s need for a swing to be set up for his occupational therapy session at home, two good Samaritans offered to do it and they are from the Klang Valley. “What are the chances of knowing anyone who could set up a swing here? It’s amazing!” Lee exclaims.

Looking at the hope and inspiration the blog has given to those who visit, Lee sees himself still blogging in five years’ time, perhaps even further into the future. At Press time, he is setting up a domain, www.darentiff.com, to expand on family interests.

A VOICE FOR AND FROM THE DISABLED

By Izwan Ismail

WHAT inspires someone to write a blog, that in turn, inspire others? For Peter Tan, he blogs to discuss the plight of the disabled people. Wheelchair-bound, the 42-year-old Penangite suffers from spinal cord injury and chronic renal failure.

About five years ago, Tan started The Digital Awakening (www.petertan.com), which chronicles his life as a disabled, and shares his experience with others who may be interested.
Five years on, Tan says his life is now more enriched by the Internet experience.

“Through my blog, I can say that more people now have a better understanding about disabled people and the problems that they face every day,” he adds.

Tan has also managed to make more friends, to share and exchange views. “Most of them are bloggers and people who read my blog. In fact, I have made more friends over the last five years through the Internet than I had before.”

In 2005, Tan initiated a fund-raising campaign for the National Cancer Society of Malaysia, Penang Branch. The organisation had provided hospice services when his mother was seriously ill. To show his appreciation, he and four other bloggers shaved their head and raised more than RM5,000 for the society.

“I am forever grateful to the community of Malaysian bloggers who had chipped in and promoted the cause in their blogs. This shows that blogging can make the world a better place,” says Tan.

According to Tan, blogging has also inspired him to lead a life that is as normal as others. “The last five years have been the most interesting in my entire life. I have travelled long distance, visited foreign countries, drive a car, and even got married. I never thought that these were possible.”

To date, Tan has posted slightly more than 1,000 entries in the five years of his life as a blogger. That makes it an average of 200 entries per year.

On the fifth anniversary of his blogging journey recently, Tan wrote, “It is the archive of my struggle within, the things that I have done and places that I have been. Most of all, this blog is a gift to myself for that one day in the future when my memory is not that good anymore. This blog is about me, myself and I. It is about my journey through life. These are the stories that I want to tell myself when that one day comes.”

Another inspiring blogger is Maryani Abdullah. She has Cerebral Palsy, a medical condition caused by a permanent brain injury, which makes speech difficult and voice hardly audible.

Through her blog, Art of Body Expression (http://mariannie-missycat.blogspot.com), Maryani expresses her personal views and concerns.
Her blog has also enabled her to connect with other talented disabled individuals to pursue a common interest – performing arts.

“I want to change public perception that we are an incapable lot. I hope to introduce a new type of innovative art performance, which will be accepted by all, and not just by the disabled community.”

In her blog, Mariani posts lots of pictures and slide shows of her performing arts activities and how the performers have developed physically, mentally and emotionally.

“Through blogging, I hope that my voice will be heard, and more will be done for the disabled,” she says.