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Press Release

Title: Fairness and equality is not always justice
Date: 28-Nov-2014
Source/Author: Dr Toh Teck Hock wrote on behalf of the Malaysian Partnership for Children with Disabilities

Fairness and equality is not always justice – Toh Teck Hock

Published: 28 November 2014 4:00 PM

Esther was an 8 years old girl when I first met her a few years ago. She was born premature and has a twin. Her twin sister has normal development, whereas Esther is a child with spastic cerebral palsy who could not walk then. We wanted to know if botulinum injection would help her muscle spasticity, and for this, I always check for family commitment and compliance with the physiotherapy because these would be the vital success factor for a better outcome.

My professional instinct (which is not always accurate) told me that Esther and her family would fall into the non-compliant group, and unlikely to benefit from the expensive injections. However, the mother convinced me then that Esther was busy with school learning and extra-curricular activities. She (Mom) had been doing physiotherapy for Esther at home daily and she could use the time spent on waiting at the hospital for something else more useful. In addition, she had got tired of having to re-explain Esther’s problem at every physiotherapy sessions, because often enough, Esther would be allocated a different physiotherapist who would need to learn how to engage with Esther. Eventually, Esther’s mother was the one who needed to “teach” the therapist what Esther’s main issues were and interventions would require.

I accepted the rationale, and trusted mother as the “good enough” therapist for Esther, and decided to engage her to help Esther with the post-injection therapy at home. A few years down the line, Esther’s mother proved her words were right. Esther has made much progress in her muscle spasticity and functionality. She is now able to walk with crutches, and does not have much joints contractures or deformity.

Nevertheless, Esther is still not a happy child. Everywhere she goes, including the school, adults surrounding her like to treat her with “fairness”. The school has to be fair to everyone. Therefore, Esther has been asked to move class every year as she progresses so that her classmates have a chance to “enjoy” the learning at top floor class. That actually means moving up storey by storey until she is now on the top floor (3rd floor). For a period of time the mother was allowed to drive into the school compound, at the Headmaster’s mercy; but now Esther has to be dropped at the school gate with her heavy school bag, or the mother has to park her car further away and walks her to the class. This was because the school could not cope with the same kind of request or demands from the other parents (sometime with valid reasons, but often not).

Accesses to toilets involves climbing up or down by one storey and walking with clutches along the long corridor, and has become a “skill” that Esther needs to learn because that is “how her life will be like when she enters society or goes out of school”. The school says funds are  always short, and they need to use the limited fund to build more classes, buy more books for the library or repair the broken facilities for ALL children. There were times where the funds eligible for children with OKU card (Esther does not like the words “OKU”) became the source of tension for the parents. The funds might not reach the bank account on time, subjected to the efficiency and availability of the desk officer in preparing the papers on time. There were also criticism about providing such fund to a childlike Esther, who is smart and able to achieve academically, being unfair to many other children without much disabilities.

The rights for children are not just about fairness and treating all children equally. The rights for children include provision of resources (teachers, facilities, programmes) to ensure a child can succeed and achieve his/her potential. Sometimes that may mean a little bit of sacrifice to their peers (their peers will  always gain something else on the other hand). We ought to teach children from young about acceptance of differences and living in harmony with others. Being fair and having equality does not always mean justice. When all children are allowed to learn without additional (sometimes intentional) hurdles, that is the day we have “Justice” for all.

*Dr Toh Teck Hock wrote this on behalf of the Malaysian Partnership for Children with Disabilities.


Source
The Malaysian Insider:
http://www.themalaysianinsider.com/sideviews/article/fairness-and-equality-is-not-always-justice-toh-teck-hock

Fairness and equality is not always justice – Toh Teck Hock

Esther was an 8 years old girl when I first met her a few years ago. She was born premature and has a twin. Her twin sister has normal development, whereas Esther is a child with spastic cerebral palsy who could not walk then. We wanted to know if botulinum injection would help her muscle spasticity, and for this, I always check for family commitment and compliance with the physiotherapy because these would be the vital success factor for a better outcome.

My professional instinct (which is not always accurate) told me that Esther and her family would fall into the non-compliant group, and unlikely to benefit from the expensive injections. However, the mother convinced me then that Esther was busy with school learning and extra-curricular activities. She (Mom) had been doing physiotherapy for Esther at home daily and she could use the time spent on waiting at the hospital for something else more useful. In addition, she had got tired of having to re-explain Esther’s problem at every physiotherapy sessions, because often enough, Esther would be allocated a different physiotherapist who would need to learn how to engage with Esther. Eventually, Esther’s mother was the one who needed to “teach” the therapist what Esther’s main issues were and interventions would require.

I accepted the rationale, and trusted mother as the “good enough” therapist for Esther, and decided to engage her to help Esther with the post-injection therapy at home. A few years down the line, Esther’s mother proved her words were right. Esther has made much progress in her muscle spasticity and functionality. She is now able to walk with clutches, and does not have much joints contractures or deformity.

Nevertheless, Esther is still not a happy child. Everywhere she goes, including the school, adults surrounding her like to treat her with “fairness”. The school has to be fair to everyone. Therefore, Esther has been asked to move class every year as she progresses so that her classmates have a chance to “enjoy” the learning at top floor class. That actually means moving up storey by storey until she is now on the top floor (3rd floor). For a period of time the mother was allowed to drive into the school compound, at the Headmaster’s mercy; but now Esther has to be dropped at the school gate with her heavy school bag, or the mother has to park her car further away and walks her to the class. This was because the school could not cope with the same kind of request or demands from the other parents (sometime with valid reasons, but often not).

Accesses to toilets involves climbing up or down by one storey and walking with clutches along the long corridor, and has become a “skill” that Esther needs to learn because that is “how her life will be like when she enters society or goes out of school”. The school says funds are  always short, and they need to use the limited fund to build more classes, buy more books for the library or repair the broken facilities for ALL children. There were times where the funds eligible for children with OKU card (Esther does not like the words “OKU”) became the source of tension for the parents. The funds might not reach the bank account on time, subjected to the efficiency and availability of the desk officer in preparing the papers on time. There were also criticism about providing such fund to a childlike Esther, who is smart and able to achieve academically, being unfair to many other children without much disabilities.

The rights for children are not just about fairness and treating all children equally. The rights for children include provision of resources (teachers, facilities, programmes) to ensure a child can succeed and achieve his/her potential. Sometimes that may mean a little bit of sacrifice to their peers (their peers will  always gain something else on the other hand). We ought to teach children from young about acceptance of differences and living in harmony with others. Being fair and having equality does not always mean justice. When all children are allowed to learn without additional (sometimes intentional) hurdles, that is the day we have “Justice” for all.

*Dr Toh Teck Hock wrote this on behalf of the Malaysian Partnership for Children with Disabilities.

- See more at: http://www.themalaysianinsider.com/sideviews/article/fairness-and-equality-is-not-always-justice-toh-teck-hock#sthash.ASEQbKRC.dpuf

Fairness and equality is not always justice – Toh Teck Hock

Esther was an 8 years old girl when I first met her a few years ago. She was born premature and has a twin. Her twin sister has normal development, whereas Esther is a child with spastic cerebral palsy who could not walk then. We wanted to know if botulinum injection would help her muscle spasticity, and for this, I always check for family commitment and compliance with the physiotherapy because these would be the vital success factor for a better outcome.

My professional instinct (which is not always accurate) told me that Esther and her family would fall into the non-compliant group, and unlikely to benefit from the expensive injections. However, the mother convinced me then that Esther was busy with school learning and extra-curricular activities. She (Mom) had been doing physiotherapy for Esther at home daily and she could use the time spent on waiting at the hospital for something else more useful. In addition, she had got tired of having to re-explain Esther’s problem at every physiotherapy sessions, because often enough, Esther would be allocated a different physiotherapist who would need to learn how to engage with Esther. Eventually, Esther’s mother was the one who needed to “teach” the therapist what Esther’s main issues were and interventions would require.

I accepted the rationale, and trusted mother as the “good enough” therapist for Esther, and decided to engage her to help Esther with the post-injection therapy at home. A few years down the line, Esther’s mother proved her words were right. Esther has made much progress in her muscle spasticity and functionality. She is now able to walk with clutches, and does not have much joints contractures or deformity.

Nevertheless, Esther is still not a happy child. Everywhere she goes, including the school, adults surrounding her like to treat her with “fairness”. The school has to be fair to everyone. Therefore, Esther has been asked to move class every year as she progresses so that her classmates have a chance to “enjoy” the learning at top floor class. That actually means moving up storey by storey until she is now on the top floor (3rd floor). For a period of time the mother was allowed to drive into the school compound, at the Headmaster’s mercy; but now Esther has to be dropped at the school gate with her heavy school bag, or the mother has to park her car further away and walks her to the class. This was because the school could not cope with the same kind of request or demands from the other parents (sometime with valid reasons, but often not).

Accesses to toilets involves climbing up or down by one storey and walking with clutches along the long corridor, and has become a “skill” that Esther needs to learn because that is “how her life will be like when she enters society or goes out of school”. The school says funds are  always short, and they need to use the limited fund to build more classes, buy more books for the library or repair the broken facilities for ALL children. There were times where the funds eligible for children with OKU card (Esther does not like the words “OKU”) became the source of tension for the parents. The funds might not reach the bank account on time, subjected to the efficiency and availability of the desk officer in preparing the papers on time. There were also criticism about providing such fund to a childlike Esther, who is smart and able to achieve academically, being unfair to many other children without much disabilities.

The rights for children are not just about fairness and treating all children equally. The rights for children include provision of resources (teachers, facilities, programmes) to ensure a child can succeed and achieve his/her potential. Sometimes that may mean a little bit of sacrifice to their peers (their peers will  always gain something else on the other hand). We ought to teach children from young about acceptance of differences and living in harmony with others. Being fair and having equality does not always mean justice. When all children are allowed to learn without additional (sometimes intentional) hurdles, that is the day we have “Justice” for all.

*Dr Toh Teck Hock wrote this on behalf of the Malaysian Partnership for Children with Disabilities.

- See more at: http://www.themalaysianinsider.com/sideviews/article/fairness-and-equality-is-not-always-justice-toh-teck-hock#sthash.ASEQbKRC.dpuf


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