Renal failure is the major cause of death in people with spinal cord injury (SCI). For those who are living with it, this adds an unwelcome burden to an already strained financial situation. Renal failure will eventually lead to a stage where hemodialysis is needed. Dialysis is a tedious and expensive process that many with SCI can ill afford.

The kidneys filter waste products from blood to form urine which is then stored in the bladder and discharged through the urethra. In some people with SCI, the bladder can go into uncontrolled contractions. These are called spasms. It causes urine to be pushed back into the kidneys. This is called a reflux. Spasms and reflux will eventually lead to irreparable damage to the kidneys and cause them to fail.

The other cause of kidney failure is urinary tract infection (UTI). This can occur in the bladder, kidneys or other parts of the urinary tract. If left untreated, it can also damage the kidneys. Among the factors contributing to UTI are poor hygiene around the genitals, sexual intercourse and diet.

There are several methods to reduce the occurrences of spasms and reflux. One is through medication. There are drugs to relax the bladder. The other is to empty the bladder at regular intervals, usually every four hourly, through intermittent catheterization.

In intermittent catheterization, a catheter, which is essentially a tube made from either PVC or latex, is inserted through the urethra into the bladder to drain the urine completely. The catheter is then removed, cleaned and stored for use later.

Unfortunately, intermittent catheterization is also a major cause of UTI by introducing bacteria into the bladder. Therefore, it is important that the catheter be kept as clean as possible and hands are properly washed prior to the procedure.

The act of drinking sufficient water throughout the day and emptying the bladder regularly reduces the opportunity for bacteria to multiply. A balanced diet is essential. However, the intake of coffee and carbonated drinks should be restricted as they are known to irritate the bladder and promote UTI.

Prevention is certainly better than cure when it comes to renal failure. The damage cannot be reversed. It can only get from bad to worse. The quality of life for people with renal failure is greatly reduced, more so when it occurs in those with severe physical impairments.

Medical and rehabilitation personnel must provide such information to people with SCI who are under their care to allow them to make informed decisions. I have known of cases where doctors were not in favour of good bladder management practices for whatever reasons best known to themselves. Pity those who regarded the doctors’ advice as the Gospel truth only to realise too late that they could have avoided renal failure had they been properly educated in these matters.

Subsequent to the seminar in Penang last Saturday, I will be conducting a similar seminar in Kuala Lumpur on August 27. It is organised by Sin Chew Daily as part of their Wishing Tree Programme. These two seminars are the prelude to a series of awareness campaigns that we will be conducting to promote Independent Living to disabled persons and the public.

Here, I would like to invite disabled persons, their families and caregivers to participate in the seminar to gain a better understanding of the philosophy and concept of Independent Living. The public who are interested to know what Independent Living is all about are welcomed too. Details are as below:

Seminar on Independent Living for People with Disabilities
Date: August 27, 2006 (Sunday)
Time: 2.00-5.00 pm
Venue: Mines ICT Able Training Institute
1st Floor, Mines Shopping Fair
Sri Kembangan, Selangor.
Language: English and Cantonese with Mandarin translation

For more information, please contact me at 013-340 3728

I am in Kuala Lumpur now. What else is new? Got in on the 7.30pm flight from Penang yesterday evening. Wuan, William and Cynthia were at KL CAT to pick me up for dinner. Life is getting too hectic.

Photo by Bryan.

My mentor and colleague in the disability movement encouraged me to participate in the Wishing Tree programme organised by Sin Chew Daily in Penang. My wish was to conduct two seminars to introduce the philosophy of Independent Living and how it can better the quality of life for disabled persons. One half of that wish was fulfilled today when I spoke at a seminar on Independent Living to a group of disabled persons together with their families and carers. Kuan Aw acted as my translator from English to Mandarin and Hokkien.

Photo by Bryan.

Ms. Yeoh, the journalist from Sin Chew, organised the seminar at the Sin Chew Media Corporation conference room. More than twenty persons attended the seminar. The guest of honour was YB Goh Kheng Sneah, the State Assemblyman for Batu Uban, the constituency where I am living in here in Penang. He graciously sat through the entire seminar that lasted two hours althugh he had engagements elsewhere too.

Photo by Bryan.

My hope is that this seminar had, one way or another, presented the options available for disabled persons to lead more fulfilling lives. The Independent Living Movement is growing in the Asia-Pacific region, thanks to the Japan International Cooperation Agency and Human Care Association for their unceasing efforts in promoting this way of life for disabled persons here, especially those who are severely impaired.

Photo by Bryan.

This is the first of a series of campaigns that we will be organizing to introduce Independent Living in Penang. We are also in the process of registering an association to best serve and support the needs of those wishing to practice living independently in their community. The seminar that I will be speaking at next is at the Mines ICT in Sri Kembangan on August 27. Details of the seminar will be published in this blog on Monday.

Dare To Dream

“What have you been doing?” An acquaintance whom I have not met for several years asked me when we met last Sunday.

I told him I am involved in Independent Living projects.

“Ah, so you are living by yourself now,” he responded.

But Independent Living is not about rehabilitating people with severely physical impairments to achieve sufficient motor functions and skills to live by ourselves. More than that, it is a holistic approach to resolve many of the challenges that we are facing.

It all began in 1962 when a young man by the name of Ed Roberts enrolled at the University of California, Berkeley. It was an extraordinary milestone for Ed. He was severely disabled by polio and needed a respirator. He was the first such person to be accepted by the university despite his condition.

Subsequently, the university accepted fourteen more quadriplegics. All of them lived in the campus hospital. Through Ed’s effort, the university was awarded a grant called the Physically Disabled Students’ Program (PSDP), the first for a university anywhere in the world.

The PSDP provided a host of support services that was unprecedented during that time. It included attendant referrals, housing referral, benefits counselling and peer support, among others. With those support services, students with severe disabilities could live in the community instead of in the campus hospital.

In 1972, the first Centre for Independent Living opened its doors in Berkeley. It was established to provide services similar to the PDSP. However, its services were available to everyone who needed it as opposed to the PDSP which was mostly for students of the university. Through advocacy by the Centre for Independent Living, Berkeley became the most accessible city in the USA by the mid-80s.

That is a brief account of how the Independent Living Movement began. The most important aspect is that it illustrated how severely disabled persons can work towards self-determination if we put our hearts to it. Independent Living is about having choices and to be responsible for our own needs and decisions.

It certainly is not about living alone, being able to perform household chores or being financially independent. Contrary to that, many severely disabled persons practicing Independent Living have discovered new leases of life with the help of personal assistants. With this kind of support, they did things that they could only dream of previously. Some have even gone on to be gainfully employed.

Personally, I still need some forms of assistance although I can perform most tasks unaided. What is the point of spending three hours cooking when someone can help me accomplish that in thirty minutes? In Penang, I live alone not by choice. There are no support services that I can rely on to assist me. Like many of my severely disabled friends, I dream of the day when I am able to practice independent living in its essence.

Nevertheless, here in Penang, we have set the wheels in motion. I have conducted Independent Living and Peer Counseling courses. This is the foundation upon which we are building our Centre for Independent Living on. There will be a half-day seminar on Independent Living for People with Disabilities this Saturday. Our target groups are severely disabled persons, their families, caregivers and those who are interested to know more about Independent Living. Details of the seminar are here and here.