by Peter Tan. Posted on March 30, 2013, Saturday
INSPIRATIONAL: Fariz aims to get a PhD in disability studies and publish a book to share his experience.
WHEN faced with devastating life-changing situations, many of us wished we could turn back the clock. We wished we could have done it differently, led a healthier lifestyle or avoided that split second before a horrific accident.
The reality is that there is no turning back in life. Time marches on regardless. We have to move forward and make the best out of the prevailing circumstances, or get left behind. Some retreat from society, unable to accept the tragedies that have befallen them, while others pick up the pieces swiftly and move on in life.
This was what happened to Fariz Abdul Rani after an accident in 1998. Hailing from Kota Kinabalu, he was a first year physics student at Universiti Kebangsaan Malaysia in Bangi when fate dealt him a cruel blow.
The motorcycle that he was riding pillion on skidded. He was flung off and landed on the side of the road. The impact from the helmet hitting the ground severely injured his neck. His spine was fractured at the fifth and seventh cervical vertebra.
Fariz and I got acquainted recently at a Disability Equality Training (DET) course that we both attended. We worked very closely together for two weeks. As I got to know him better, I was impressed by how fast he had climbed up from the depths of his shattering injury to become a successful entrepreneur, and more.
His injury level is similar to mine. He lost the functional use of his arms and legs after the accident. Fortunately, he regained the use of his hands after three months of intensive therapy and is very independent in his activities of daily living.
After he was discharged from the hospital, he went back to live with his parents in Sabah. He spent most of his time at home watching television, chatting online and listening to music. That became his routine as he struggled to come to terms with his impairments.
At one point in time, he really wished he could turn back time as he saw his friends enjoying their teenage years while he was confined to his wheelchair in the house. He wished that he had not ridden pillion on the bike that fateful day. After three long years, he finally decided that there was more to life than just going through the same routine day in and day out. He got a job as an administrative officer in a company specialising in prosthetics where he worked diligently for seven years.
In 2007, Fariz attended the Disability Equality Training (DET) course organised by the Welfare Department and Japanese International Cooperation Agency (Jica) in Kuala Lumpur. He has since conducted DET workshops for the Kota Kinabalu City Hall, Ministry of Transport and many other organisations.
At the same time, he established an advocacy group called Young Voices Sabah under the auspices of the Leonard Cheshire Disability Global Alliance. This group consists of young disabled persons speaking out on disability and development issues, and human rights, among others.
Through the advocacy activities of Young Voices Sabah, many disabled persons became more aware of their rights to full participation in society. It was that time that Fariz noted many of them were unemployed although they were capable.
With that in mind, he established JB Prosthetic and Rehab Supply in 2009 and recruited disabled persons to work for him. The company supplies artificial limbs and rehabilitation equipment. The other reason for setting up such a company was also because he wanted disabled persons to use better quality assistive devices to further enhance their independence.
Never one to rest on his laurels, Fariz co-facilitated a two-week DET workshop in Jordan with Dr Kenji Kuno of Jica in October last year. According to him, it was a good learning experience but also very challenging due to the language and cultural barriers that are totally different from Malaysia.
Nevertheless, disabled persons in Jordan have the same aspirations as disabled persons everywhere else. They too want to live in an inclusive society free from discrimination and systemic barriers. Through the DET workshop, they now have a better understanding of what they need to do to move towards that direction.
Fariz obtained his certification as a senior trainer for DET early this year. That was where we first met and then became good friends. There are four senior trainers in Malaysia. He is the only senior trainer in Sabah. The other three senior trainers, including myself, are based in the Klang Valley.
When asked what he wants to achieve in life, Fariz — who is 33 years old now — said that he wants to get a PhD in disability studies and publish a book to share his experience with other disabled persons. He is currently pursuing a Bachelor of Psychology with Open University Malaysia as the first step towards realising that ambition.
He is gratified to see that the advocacy activities have borne fruit. The DET workshops that he conducted have changed the mindset of the authorities in Kota Kinabalu as more and more public facilities are being made accessible. This is good news for disabled persons who always had to contend with countless physical barriers every time they went out.
From spending three years in a wheelchair doing the mundane, he has risen back up to become a role model to other disabled persons, an agent of change to make society more inclusive and a successful businessman. That is something many people can only dream of doing.
It has not been easy for Fariz to get to where he is today. He certainly has come a long way since that tragic day in 1998. He has triumphed over his impairments and lived up to the adage that tough times never last but tough people do.
Comments can reach the writer via firstname.lastname@example.org.
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Life on the edge
Posted on March 16, 2013, Saturday
VISITS to the hospital are humbling experiences for me. Seeing sickly people with an anguished demeanour is a stark reminder of my own mortality.
For that reason, I used to dislike going to the hospital. I still do. The smell and the long wait for consultation with doctors are the other major pet peeves.
These visits are necessary for me nonetheless. My kidneys are in bad shape. The periodic check-ups are to ensure that I get proper medical care should there be any change in their condition.
Kidney failure is one of the leading causes of death for people with spinal cord injury. I have been living in the shadow of that fear long before I was diagnosed with it. Many friends in similar condition have succumbed to this disease.
How I came to discover my kidney problem is a story worth telling, however far-fetched it may sound.
I was half-asleep when I heard a familiar voice telling me in Hokkien, “If you don’t take care of yourself, you will not live longer than two years.”
Those words alarmed me. I opened my eyes to look around.
The curtains fluttered in the cool breeze blowing in from the open window. Street lights basked the room in a warm glow.
There was no one else. I was alone in the room. That was my mother’s voice. And she had passed away a few months earlier.
I wanted to dispel that as another dream but those words lingered at the back of my mind, nagging me until I finally got a blood test done a couple of months later.
The results indicated anaemia, unhealthy cholesterol levels and impaired renal function. The damage to the kidneys had progressed to Stage 3 Chronic Kidney Disease.
My serum creatinine level was 188 umol/L. Creatinine is a waste product of muscle activity. It is removed in the kidneys. When the kidneys fail, the creatinine level in the blood rises.
Kidney disease is categorised into five stages. At Stage 1, kidney function is normal with signs pointing to kidney disease.
Stage 5 is also known as End-Stage Renal Failure. Kidney function is severely impaired. Treatment options at this stage are either dialysis or kidney transplant.
At Stage 3, my kidney function was moderately reduced. The urologist put me on medication to relax the overactive bladder that was pushing urine back to the kidneys and advised me to continue with intermittent catherisation.
He then sent me to see the dietician to learn about a low-protein diet. I had to limit my meat and sodium intake. This was to slow down the damage to my kidneys.
Had I not started on the low-protein diet and adhered to the regiment prescribed by the urologist, the condition of my already damaged kidneys would have quickly deteriorated.
A urinary tract infection one year after the diagnosis nudged me into Stage 4. I had to reduce my protein intake even more.
From that day onwards, I was very cautious of what I eat. Each mouthful could potentially damage my kidneys further.
My most recent trip to the hospital was last Monday. It was my first visit to the nephrologist there. Blood test result showed that the serum creatinine is at an all-time high of 301 umol/L.
I have been displaying some of the classic symptoms of severe kidney disease like chronic fatigue, itching and difficulty in concentrating for some time already.
The nephrologist explained that at some point in time I will need dialysis. He prepared me for that eventuality by elaborating on the two options that were available to me other than kidney transplant.
Haemodialysis is the first option. I have to be hooked up to a machine to draw out waste from my blood. Each session takes four to five hours and has to be done three times a week.
The other option is peritoneal dialysis. A catheter is used to fill the abdominal cavity with dialysis solution. The solution draws waste from the body using the membrane in the abdomen called peritoneum as a filter. The waste is then drained away through the same catheter.
With haemodialysis, I have to travel to the centre and spend half a day there. Peritoneal dialysis can be done at home or while I am travelling.
Whichever option that is suitable for me will be assessed by the nephrologist when the time comes. I certainly prefer one that does not restrict my time and freedom for other activities.
I was more saddened than shocked as I listened to the nephrologist. This is an outcome I had expected although I fervently wished it would not happen so soon. I am living on a thin line now. This makes me appreciate life and the people around me even more.
Last but not least, was that my mother coming back to warn me that night? I want to believe that it was so because the blood test prompted by the ‘timely advice’ and subsequent preventive measures in all probability gave me a longer lease on life.
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The language of disability
Posted on March 9, 2013, Saturday
THE terminologies related to disability are still evolving. We have not reached a consensus where the terms we use are universally acceptable by everyone. Depending on a person’s orientation, what is offensive to some is acceptable to others. Nonetheless, I have a distinct preference for the words and phrases that I use when it comes to talking about disability matters.
My peers have asked me why I am still fussing over semantics when I should be putting in effort to solve the real problems. I believe that it is important for me to establish a positive image of myself in the advocacy work that I do. How I see myself is magnified in how other people see me. It is a political stand I take to elucidate the difficulties that disabled people face in society.
I am a proponent of the Social Model of Disability. This model is of the view that people are disabled by inequality and social exclusion. It identifies the causes of these problems. They are man-made barriers created through omission, ignorance, prejudice and discrimination in attitudes and actions. The removal of these barriers can greatly improve our well-being and allow us to become independent, and enjoy opportunities and choices like other members of society.
The Social Model of Disability makes a distinction between impairment and disability. They do not mean the same. Impairment is the loss of sensory, physical or mental functions of the body from congenital causes, injuries or diseases. On the other hand, disability is participation restriction in society that is caused by various forms of external barriers.
For example, I have spinal cord injury. I cannot walk. That is an impairment. I use a wheelchair for mobility. Disability occurs when I cannot get into the cinema to watch a movie because it has no ramp at the entrance. Putting a ramp for me to enter will remove that disability. It is as simple as that. Of course, this is looking at one problem in isolation. The cinema may have other barriers that cause disabilities and these may have to be removed as well.
The term persons with disabilities is used in the United Nations Convention on the Rights of Persons with Disabilities. However, the world body also takes the stand that: “Disability is not something that resides in the individual as the result of some impairment.” It further adds that, “Disability resides in the society not in the person.” Persons with disabilities is used here for the sake of expediency in the absence of a term that is acceptable to all.
People who subscribe to the Social Model of Disability prefer disabled persons. It is taken to mean that persons are disabled by barriers in society which is exactly what is happening. On the contrary, persons with disabilities puts the ownership of disabilities on the individuals. Their impairments are the cause of the disabilities they experience.
Persons with disabilities gained prominence with the emergence of the People First Language movement. According to its manifesto, the person should come before the condition. This is to preserve the dignity of the persons concerned as we are not our conditions and should not be identified as such. That, I totally agree with. However, “persons with impairments” is a more fitting term to that end as it has been established that disability is not in the person but in society.
Some other terms like handicapped, wheelchair-bound, the disabled and differently-abled are used frequently in conversations and printed materials. Handicapped is an archaic term that is no longer used to refer to disabled persons. Its usage brings to mind a sense of pity, helplessness and inferiority. At the same time, accessible parking and accessible toilet are preferred over handicap parking or disabled toilet. These facilities are made to be usable by disabled persons; hence they are accessible to us.
When I first sat in a wheelchair, I saw it as a shackle. It felt like I was serving a long prison sentence. Over the years, I have come to appreciate the freedom and independence I gained. It has allowed me to travel to places I otherwise would not be able to because of tetraplegia. I no longer see myself as being bound to the wheelchair. It is the very tool that liberates me. In that sense, wheelchair user is more acceptable.
The use of “the disabled” as a collective noun is considered a form of social segregation. Disabled persons is the better choice as we are very much a part of mainstream society too. The term differently-abled actually focuses on the impairments of the person. All of us are differently-abled which makes it redundant. But the reason eludes me on why it is applied specifically on disabled persons.
The opposite of disabled persons is neither able-bodied nor normal. That term is an expression of the difficulties we face. There are double leg amputee Paralympians who can outrun most people on this planet. Who then is more able-bodied in this case? On the same note, having impairments is not an abnormality. It is part of life and living. When there is a need to mention people without impairments in relation to disabled people, non-disabled persons should be used instead.
While it took me several hours to write this piece, I spent a good many years trying to figure out the terms that are acceptable and appropriate, and those that are not. It is not about political correctness. It is about our struggle. It is about self-respect. I must also emphasise that I am not saying that it is wrong to use one term over another. These are not the absolutes. It is a matter of values and perspectives. And these are mine.
Comments can reach the writer via firstname.lastname@example.org.