For all the years that I have been living with spinal cord and chronic renal failure, I have not had a urodynamics study done to determine the pressure in my bladder. This test is needed to determine whether the pressure in the bladder will cause a reflux and further damage to the kidneys.

I had one done at SJMC last Saturday for once and for all as to see if the pressure in my bladder is the cause of my renal failure and whether I need further treatment. I have been waiting to get it done at UMMC but two appointments were cancelled. The first time was because the urologist was away and the second because the urodynamics clinic was under renovation.

All garbed up at SJMC waiting for the urodynamics study to commence.
Photo by Wuan.

There is usually a six-month waiting period at UMMC but it would have been done free of charge there as I hold the Kad Orang Kurang Upaya from the Department of Social Welfare Malaysia. It costs RM1,500 at SJMC. Another urodynamics study was schduled for mid-June at UMMC but I thought I better get it done first at SJMC just in case the one at UMMC gets cancelled again.

The procedure was not as embarrassing as I had anticipated. The technician was very patient in explaining the entire procedure and made me feel at ease even though I was bare-bottomed throughout. A thin tube was inserted through the urethra into the bladder and another into the rectum. The tubes were connected to a device that fills up the bladder with saline at a pre-determined rates - 30ml/min and 15ml/min, measured the pressure in the bladder as it filled up until urine started to leak.

The equipment used for the urodynamics study.
Photo by Wuan.

Another device was placed right below my seat to measure the amount of urine that leaked. After that, the residual urine in the bladder was sucked out with a syringe and measured. The results showed that the presurre in my bladder is normal until the volume is around 300ml where the pressure rises to slightly more than 50cmH2O and the fluid started to leak. The leaked volume was around 100ml while residual volume was around 200ml.

According to the urologist, as long as I keep up with my three hourly intermittent catheterisation programme, it should not be a cause for concern as reflected by the results. No further treatment or medication is necessary. He recommended that I get the urodynamics study done every two years. He also checked the lump in my scrotum which has gotten smaller after a two-week course of antibiotics. I am to go back to see him in two months to get the lump checked again.

Difficult it may be for me to tear myself away from writing on disability rights in this blog, I have decided that I have written all that needs to be written in more than 300 entries. I have nothing new to say anymore. It has come to the stage where the points that I raised are repetitions of what I have written many times before. I should really stop flogging the dead horse now.

This hiatus will do me a world of good and perhaps provide a fresh perspective on the entire issue. The work is not done yet but this workman needs to put down his tools for a while to concentrate on some personal pursuits.

I miss those days when this blog was more personal and my entries were more emotional. I hope to egg my writing on to that direction again. This also reminds me that the weekend is almost here. The one thing that I really really wish to do come Sunday is to wish Mum a “Happy Mother’s Day.”

Via Scott Rains. A little outdated but relevant nonetheless.

Tiger Airways deaf to discrimination claims
Article from: Herald Sun

Jane Metlikovec with AAP

April 11, 2008 01:41pm

THE advent of low-cost airlines and zealous interpretation of safety regulations has led to discrimination against people with disabilities, experts say.

A group of deaf people from Melbourne has launched a discrimination case against Tiger Airways after the budget carrier insisted they travel with a carer last month.

But federal disability discrimination commissioner Graeme Innes says the problem isn’t limited to Tiger.

“There have been endemic problems in airlines over the past few years where people with disabilities have been refused carriage because of their disability,” Mr Innes told Sky News.

“The introduction of low-cost airlines has been one of the reasons.”

Mr Innes said they often applied unnecessarily strenuous or zealous interpretations of airline safety regulations and their staff weren’t trained well enough.

“What you get sometimes are individual decisions which are outside airline policies,” he said.

In 2006, Virgin Blue was forced to back down over its policy requiring wheelchair-bound passengers to be accompanied by a carer. It’s currently fighting a federal court case over alleged discrimination, Mr Innes said.

Last week, Mr Innes co-chaired a forum with the parliamentary secretary for disabilities services, Bill Shorten, to address the issue of how disabled people are treated by airlines.

The forum included the main airlines, the Civil Aviation Safety Authority and Government representatives.

Mr Shorten said the Government was concerned that discrimination was taking place “in the name of safety”.

“But the reality is most people with impairment can understand (safety) instructions and fly,” Mr Shorten told Sky News.

Mr Shorten said Tiger was wrong to insist deaf passengers travelled with a carer.

“People who are deaf can still see and all emergency safety briefings have pictorial representations,” he said.

“Just because people are deaf doesn’t mean that they’re stupid.”

He said Qantas had the best policy: “If you can’t self-medicate and self-see then you need a carer”.

But Mr Shorten said individual flight attendants were not to blame.

Better training and awareness about disability was needed, he said.

“The airline industry needs to reach out to people with disability.”

Public servant Adrian Doyle, 38, said he was left humiliated in Tasmania last month when he, his wife Julie, and two friends, Robyn and Steve May, who are all in their 30s, were told they could board a Tiger Airways plane only if they organised - and bought a seat - for a sign language translator.

A spokesman for Tiger Airways, Matt Hobbs, told the Herald Sun the policy was in place to protect the safety of all passengers in case of emergency.

Mr Hobbs said Tiger was not looking at revising its policy to let fully capable deaf adults travel without an aide.

“The carer issue is a standard practice, and it is there to protect the safety of all passengers, and without it, the safety of passengers could be jeopardised,” he said.

But Mr Hobbs rang back five minutes later saying the Tiger policy was actually to allow deaf people to travel without a carer.

Tiger would now address Mr Doyle and his travel companions.

“We are happy to apologise to the people involved for the inconvenience and embarrassment they might have experienced,” Mr Hobbs said.

Mr Doyle, of Nunawading, has filed the complaint against Tiger with the Human Rights and Equal Opportunity Commission under the Disability Discrimination Act.

The group was eventually permitted to take their seats on the March 4 flight from Launceston to Melbourne, after a stewardess told them they would not be allowed to travel alone again.

“The stewardess wrote on a piece of paper to me that we all require a carer on a plane because of our ‘deafness’, which sure floored me,” Mr Doyle said.

“My friends had steam coming out of their ears, and my wife was dumbfounded.

“I then took the paper and wrote that they had insulted us by saying that we require a carer, since we have all travelled a lot, and never encountered any problems with our disabilities.”

Mr Doyle double-checked the Tiger policy over the phone when he returned home, and was again told that he would be required to have a carer next time.

“I am shocked and stunned that Tiger allow themselves to discriminate against deaf people,” he said.

Anti-discrimination consultant Julie Phillips said the original Tiger policy appeared to be out of the dark ages.

“Deaf people fly every day - they do not need carers. It’s ridiculous,” Ms Phillips said.

Virgin Blue and Jetstar both allow deaf passengers to travel without carers.

The Star reported that Pasir Mas MP Ibrahim Ali wants to propose to the government to allocate RM500 monthly to disabled people after he was confronted by members of Malaysians Against the Discrimination of the Disabled (MADD) in the Parliament House over his suggestion that tetraplegic Bukit Gelugor MP Karpal Singh stand up when addressing the Parliament.

RM500? I would like to believe that Ibrahim was delusional to think that the dignity of disabled people could be bought over so easily. Unfortunately, he was not! Everyone has a price but this entry is about Ibrahim and not about so-called advocates selling out the dignity and interests of the people that they were supposed to represent. Yes, disabled people can be bought over but come on lar, RM500 per month only? Some of us may willingly sell our souls for money but we are still not that cheap, ok!

Back to Ibrahim. He apologised to the members of MADD. If he really loves disabled people from the bottom of his heart like he was reported to have said, I would have preferred that he extend a sincere apology to Karpal and gave a commitment to bring up the monumental problems faced by disabled people all over Malaysia in Parliament instead of pulling a cheap stunt with the RM500 proposal. When pressed by Segambut MP Lim Lip Eng on whether he would extend the same apology to Karpal, Ibrahim refused and hopped away in a huff

It is time all serving politicians learn about the Social Model of Disability. I am going to repeat this for the umpteenth time. The Social Model of Disability states that people are disabled by attitudinal and environmental barriers rather than disabled by their conditions. What this means is that politicians like Ibrahim have failed in their duty to ensure that the built-environment provides equal accessible to disabled people. These environmental barriers were created by people who disregard disabled people as equal partners in society, namely people like Ibrahim. We can make do without such shallow wakil rakyats who have time and again proven that politicians do not have to be intelligent and sensitive to social issues to get elected.

Related entry:
Ibrahim Ali: Hello! Where Is Your Brain?

The Star Online
Thursday May 8, 2008 MYT 3:36:29 PM
Ibrahim apologises to disabled, but not to Karpal Singh
By PAUL CHOO

KUALA LUMPUR: Commotion broke out in the Parliament lobby Thursday when Datuk Ibrahim Ali (Independent - Pasir Mas) stormed out from a meeting with a group of disabled people demanding for his apology to Karpal Singh at the Parliament lobby at noon.

The group - known as Malaysians Against the Discrimination of the Disabled (MADD), urged Ibrahim to retract insulting statements against Karpal Singh recently when he asked the latter to stand when speaking in Dewan Rakyat.

Ibrahim had apologised to the group initially for hurting their feelings over the remarks he made in Dewan to Karpal Singh.

However, he refused to say sorry to Karpal Singh.

“My problem was with Karpal Singh and never with all of you. I have never offended you and I love disabled people from the bottom of my heart.

“But if you all have misinterpreted my meaning, I extend my sincerest apologies.

“I hope you don’t misunderstand this because there are groups trying to take advantage of you,” he said, referring to several Pakatan Rakyat leaders - Datin Seri Dr Wan Azizah Wan Ismail, Lim Lip Eng, Loh Gwo Burne, Gobind Singh Deo and others who had escorted the group into Parliament.

Ibrahim even added that he would propose that the Government allocate a RM500 monthly allowance to the disabled. This was greeted by cheers.

A huge spat soon ensued however when Lim Lip Eng (DAP - Segambut) questioned Ibrahim if he would offer a similar apology to Karpal Singh.

To this, Ibrahim shouted “No! No! No!”

“I will not apologise to Karpal (Singh). You cannot force me. I will not apologise for the benefit of the Opposition party,” he retorted, and stormed off from the meeting.

In response, the group shouted back at him: “What if you are disabled one day?”

A representative from MADD later handed over a memorandum to Opposition Leader Dr Wan Azizah.

Last week, Ibrahim critised Karpal Singh for not standing up to speak while Bung Mokhtar and Karpal Singh engaged in a heated exchange of insults where Karpal Singh called him “big foot” and he called Karpal Singh “big monkey”.

It is commendable that the Minister of Women, Family and Community Development Datuk Dr. Ng Yen Yen has taken the initiative to set up a task force to encourage more disabled people to get jobs in the public sector. This is a big step for disabled people who have thus far find it difficult to get jobs due to a multitude of reasons.

The task force should not only concentrate in making work places accessible. It should also conduct programmes to educate colleagues of disabled people through Disability Equality Training (DET) to make them understand the prime causes of why people are disabled. At the expense of flogging the dead horse again, people are disabled by the environment and attitudes rather than by their condition.

Take one of the most basic but crucial facility - the toilet - for example. Toilets that are not large enough to accommodate a wheelchair prevents a wheelchair user from using it. He is disabled by facilities that he cannot use. Provide toilets that adheres to the Malaysian Standard MS 1184: Code of Practice on Access for Disabled Persons to Public Buildings (MS 1184) and the wheelchair user is no longer disabled when he needs to use one.

Nevertheless, toilets are only part of the problem for disabled people who are seeking employment. There should be a comprehensive policy to ensure that people who have impairments are not marginalised in areas of education. Malaysian Confederation of the Disabled secretary Bathmavathi Krishnan was correct in saying that “the ministry’s move would encourage the disabled to acquire higher academic qualifications.”

Everybody knows that education is of utmost importance, not only for disabled people seeking gainful employment, but also for non-disabled people. What I would like to know is how many of our mainstream schools are physically accessible to disabled people? Without accessible schools disabled people are unable to get even a primary education, let alone getting qualifications at the tertiary level.

To get to the schools, public transport must be accessible. The same goes for the necessity of an accessible public transport for disabled people to commute from their homes to work places. The walkways from the home to the bus stop and from the bus stop to the work places must be accessible. The public facilities in Malaysia has not reached that level of accessibility yet. To talk about employment when basic infrastructure is not in place yet is putting the horse before the cart.

The government can allocate 1% or even 10% of jobs in the civil service for disabled people. Without first resolving the core issues, I dare say that not many disabled people will benefit from this policy. If Dr. Ng is serious in this matter, she must work with the Minister of Education, Minister of Transport, Minister of Housing and Local Government, and other relevant ministries to tackle the deficiencies in the entire system. Otherwise, this may just be another brilliant plan that will never see fruition.

The Star Online
Wednesday May 7, 2008
Task force to get more disabled into civil service

KUALA LUMPUR: A task force is being set up to encourage more disabled people to work in the public sector, said Women, Family and Community Development Minister Datuk Dr Ng Yen Yen.

She said the ministry wanted feedback on how to create a suitable working environment for the disabled.

Help for disabled: Dr Ng pushing Bathmavathi as they move together with Malaysian Federation of the Deaf president Mohamad Sazali Shaari (left) and Dr Wong.

The task force would comprise ministry, Public Service Department (PSD) and disabled representatives.

This would also help PSD achieve its aim of having at least 1% of the government workforce, or 10,000 workers, being the disabled, she said.

Currently, there are 220,000 disabled persons registered with the Social Welfare Department. Only 581 of them are working in the public service and fewer than 5,000 in the private sector.

Dr Wong Huey Siew, Society for the Blind Malaysia’s Employment and Computer Development chairman, said around 50% of disabled persons left their jobs within six months.

Malaysian Confederation of the Disabled secretary K. Bathmavathi said the ministry’s move would encourage the disabled to acquire higher academic qualifications.