One tough cookie
by Peter Tan. Posted on November 9, 2013, Saturday
IRON LADY: Siti is seen with her mother.
STATURE and gender do not tell the real stories of one’s strength. Rather, it is the acceptance of challenges and overcoming them that defines a person. Be it a diminutive lady or a strapping hunk, both have the ability to triumph over a difficult situation as long as they possess the tenacity and perseverance to see it through.
Siti Zuraidah Muhammad Husain is one diminutive lady who has prevailed against the odds. I have known her since 2006 when she was an administrative officer with the Japan International Cooperation Agency (Jica). Although we attended several week-long workshops together where we became good friends, I knew little about the story of her life until I interviewed her for this column.
Born in 1981, she is the youngest of four siblings and the darling of the family.
“When I could not move my legs at five months old, my parents took me to the hospital,” she recounted those early years of her childhood. “It was only after seven long years and many tests later that the doctors discovered a rare tumour in my spinal cord called a teratoma. The growth was successfully removed but I remained a paraplegic.”
Her mother had to carry her to classes every day when she attended primary school. A pressure sore on her buttocks that turned nasty interrupted her schooling in Primary 6. She had to stay in the hospital for almost a year. The headmaster refused to let her sit for the UPSR for fear she would drag down the overall results of the school should she fail.
Not one to accept the unfair treatment meted out to her daughter, Siti’s mother refused to take no for an answer and looked high and low for a resolution. A chance meeting with an officer from the Ministry of Education at the hospital cafeteria resulted in a timely intervention. The headmaster eventually relented and allowed Siti to take the examination from her hospital bed.
She attended only the first two days in secondary school before she had to stop again due to further complications from the pressure sore. Her parents strongly believed in getting her a good education despite the circumstances. They employed tutors to guide her in English, Malay, Mathematics and Religious Studies while she studied by herself for the other subjects. She passed the PMR and continued studying from home.
Siti returned to school in Form 5 when the pressure sore finally got better. She was assigned a classroom on the ground floor. However, the school administration chided her for wearing blouse and skirt as her uniform instead of a headscarf and baju kurung. Her mother had to get a letter from the doctor explaining the necessity for her to wear suitable clothing that is airier and more comfortable to expedite the healing of the sore.
With the unwavering support of her parents and siblings, Siti went on to study business administration at University Tun Abdul Razak (Unitar). It was not easy though. The lecture halls were located on the upper floors of a row of shop houses. The university security guards had to lift her and her wheelchair up a flight of stairs to get to the elevators. Luckily for her, she only needed to attend the lectures twice a week. Her perseverance eventually paid off. She graduated after four and a half years of slogging at it.
“I have proven to myself and the world that disabled persons too can get a degree. We are no different from anyone else,” Siti beamed as she talked about the proudest moment of her life albeit with a tinge of sadness that her father could not be there to share in the joy. He passed away during her last semester.
With the graduation behind her, she came face to face with another set of problems. Only she knows how many job applications and resumes she sent out after that. She attended career fairs but employers were reluctant to hire her. After a year of receiving one rejection after another, she finally landed the job with Jica. That was where we first met.
I saw her as a bubbly person who was always generous with her smiles and polite words. She never let the hardships that she had endured all the years before that show. However, hidden beneath that sweet countenance is a fiercely independent and ambitious woman.
That ambition drove her to take up a post-graduate course with Open University Malaysia (OUM) in between her full-time job now as senior management executive with PLUS Malaysia Berhad. She will be graduating with a master of business administration next month. Her one gripe about OUM is the lack of accessible parking. She always had to arrive at the campus very early to get a parking space that was convenient for her to get out and back into the car again.
Siti wants the government to ensure that there are adequate accessible facilities in public places, government offices, shopping malls and tourist spots.
“There are not enough facilities for disabled persons. Many buildings do not have lifts and ramps. Not all hotels have accessible rooms. Shopping malls do not pay enough attention to our needs.”
At the same time, she hopes that the government is serious in ensuring that the 1 per cent employment opportunities for disabled persons in the civil service is fulfilled. As it is, jobs for disabled persons are difficult to come by even when they are well qualified.
On a personal front, she looks forward to the day when she can live a life free from discrimination and not be seen as an oddity just because she uses a wheelchair. Her time working with Jica opened her eyes to the possibilities of a society where disabled and non-disabled persons can live together in dignity and harmony.
Siti has taken all the good and bad in her stride. Her resilience in the face of adversity is a trait worthy of emulation. After what she has gone through, there is nothing that can stop her now. She is an embodiment of the indomitable human spirit. She is one tough cookie.
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The need for a better support system
by Peter Tan. Posted on November 2, 2013, Saturday
THE World Health Organisation and World Bank world report on disability states that 2 to 4 per cent of the world population experience significant difficulties in functioning.
These proportions when extrapolated to the Malaysian context indicates a number of between 600,000 and 1.2 million persons out of a population of 29.9 million.
For every disabled person we see in public places, there are many more with severe impairments who are unable to come out.
Their conditions include advanced stages of muscular dystrophy, high level spinal cord injury, and severe cases of poliomyelitis and cerebral palsy.
The issues that they face are seldom discussed.
Like they say, “Out of sight, out of mind.”
Persons with severe impairments require round-the-clock support in every aspect of their activities of daily living.
The current infrastructure and support systems in our country are grossly inadequate for them to achieve a reasonable quality of life.
These stumbling blocks to their inclusion segregate and marginalise them from society.
They are not the only persons affected.
Their immediate family members are also affected as a whole.
Someone, usually the mother, has to become the sole caregiver if the person is unmarried.
If one spouse has an impairment that requires constant support, the other half may have to give up a promising career to provide full-time care.
The family finances take a hit if the mother or both spouses are the breadwinners.
Those most affected in such situations often do not have insurance, Socso or other forms of compensation, while others are impaired since birth or at a young age.
I got acquainted with a family where both parents are hawkers running a noodle stall in a small town.
Although they are not well off, they lead a comfortable life.
The mother had to stop working at the stall to care for the son who became
paralysed from the neck down in a road accident.
He was a student then.
Their savings were depleted by medical bills, traditional treatments, and acquisitions of assistive devices and disposable items.
The mother constantly worries about what will happen to her son after her death.
Such concerns of parents with disabled children are the norm, an issue that has not been effectively addressed as yet.
The Welfare Department provides financial assistance to disabled persons who are incapable of work and also for carers of those who are bedridden and chronically ill.
The fact sheet in the department’s website states that the objectives of the financial assistance, among others, are to improve the quality of life and to avoid or minimise admission into welfare institutions.
Indeed, institutions are not conducive places to spend the rest of one’s life.
At RM150 and RM300 respectively, these amounts are not enough to sustain the basic needs of a family, especially one where the regular income is drastically reduced or has stopped altogether.
Apart from groceries and utility bills, there are other recurring expenses for disposables items, supplements and medicines not supplied for free by government hospitals, which can cost thousands of ringgit every month.
Additionally, there is also a need for highly customised assistive equipment such as wheelchairs for mobility.
While I do not expect the entire household’s expenses to be covered, the financial assistance should at least cover the employment of assistants to help with the disabled person’s activities of daily living.
Assistants can relieve the stress and labour of the sole caregiver.
Consequently, the mother or spouse can return to work to provide for the family financially.
The disabled person can even live independently from the family with the support of assistants if he so desires.
These assistants also ensure that support is not disrupted should the caregiver become incapacitated due to illness, accident or death.
Such schemes are being practised in the United Kingdom, United States, Japan and many other countries.
The governments there provide sufficient allowance for disabled persons to hire assistants based on needs.
On top of that, grants are provided to make the home accessible, for example to widen doors and install ramps, and improve access to bathrooms.
It is time our government review the provisions of assistance to severely impaired persons to reflect the present-day trend of the support system in developed countries, a coveted status we want to achieve by the year 2020.
The current scheme by the Welfare Department is a token that does not address those pertinent needs.
More than often, affected families have to approach or even depend on their extended families to supplement their expenses.
Together with an accessible infrastructure and inclusive policies, severely impaired persons can come out conveniently, even become gainfully employed and participate meaningfully in society.
This has been proven in the countries mentioned where the support provided has empowered severely impaired persons to lead productive lives and contribute to nation building.
It is not a matter of whether our country can afford to allocate funds for such a scheme but whether we can continue to ignore the hardships faced by severely impaired persons and their families.
We cannot claim to be a caring society unless we put our money where our mouth is.
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The last quarterly review of my kidneys for 2013 was one I was not looking forward to. My serum creatinine for the previous three blood tests for this year showed a marked decrease in kidney function when it went above 300 umol/L. What a relief it was when the creatinine level went down to 316 umol/L from an all time high of 331 umol/L. Although the reduction was not significant, it did not continue to go up at the very least.
My cholesterol level went up as I stopped taking Lipitor for a few. The doctor advised me to start again to bring down the LDL level. I also reduced the dosage of Ketosteril from four capsules to two because I suspect it was causing itching. At the same time, I stopped supplementing with calcium carbonate. The other reason I stopped was because I was overwhelmed with having to take too many pills and capsules. I have since learnt to space the dosage throughout the day.
The annual ultrasound was done on the same day my blood were was on 9 December. There were no extraordinary findings in the ultrasounds of my kidneys and bladder.
US KUB of 09-Dec-2013
Tetraplegia with neurogenic bladder.
Comparison made with previous ultrasound dated 17/12/2012.
Both kidneys are increased in echogenicity.
Right kidney measures 10.4cm in bipolar length.
Left kidney measures 9.0cm in bipolar length. Simple cyst seen at upper pole of left kidney measuring 1.9 x 1.5cm.
No calculi or hydronephrosis.
The bladder wall is trabeculated and not well distended. No stone seen within.
1. Renal parenchymal disease
2. Trabeculated bladder secondary to neurogenic bladder
Generally, the kidneys are holding up for now as the blood tests and ultrasound have shown. I have had to go for quarterly review of my renal function every quarterly since the beginning of this year. If the results for the next review does not differ too much, I may want to request for half-yearly review instead.