Unwanted because of abnormalities? My parents had hope for me to live

As a woman with a disability, I am deeply confused as to how truly inclusive our society is, towards families that have children with special needs and towards building a culture of life in our nation. This is after reading the report, “MP renews call for review of abortion gestational limit” (March 6).

I was born with brittle bones disease and doctors told my parents I would not live long. In those days, in the 1970s, parents here did not know much about genetic defects that a child could have before their birth.

Now, it is a different world.

In a Washington Post report in 2017, Singapore is listed together with Canada, China, the Netherlands, North Korea, the United States and Vietnam as having the most liberal abortion laws. We allow abortion up to 24 weeks of pregnancy. There is no defined age limit for abortion and no parental consent is required for minors.

In the latest parliament proceedings, Dr Amy Khor, Senior Minister of State for Health, said that “foetal viability” (or the chance of babies surviving) below 24 weeks remains low and that “morbidities, such as neuro-developmental disabilities, are very high among the premature babies who survived”.

Member of Parliament Alex Yam had asked to lower the 24-week limit to 22 weeks.

Back in 2014, when he raised the same issue, Dr Khor said then that a routine foetal scan is performed at 20 weeks and this is the stage where the foetus is sufficiently developed to enable structural abnormalities to be picked up from the scan.

Keeping the abortion limit at 24 weeks will allow mothers some time to consider the implications and make an informed decision as to whether to keep or abort the child, without being rushed to meet a shorter cut-off time.

Under the Guidelines on Termination of Pregnancy Act, pre-abortion counselling may be adapted for women diagnosed with foetal abnormalities.

My view is that abortion at every gestational age after conception kills a human being.

Much of human biological research confirms that human life begins at conception, meaning fertilisation.

Do the babies who were aborted because of foetal abnormalities and medical issues matter to our nation, just like how I mattered to my parents and was therefore given a chance at life after I was born?

I live and serve our nation today because technological advances empowered me to live an abundant life, one that benefits our young generation as I am a private educator.

Abortion is physical death not only for a child, but it is also psychological death for a mother who grieves a death, in a different way from a miscarriage that is not within human control.

What does it cost Singapore to lower the abortion limit to 22 weeks? A child killed is a local talent lost.

https://www.todayonline.com/voices/unwanted-because-abnormalities-my-parents-had-hope-me-live

Love, intimacy go beyond sex

As a person born with a physical disability and diagnosed with bipolar disorder in my mid-20s, I tend to feel I have a little more insight into how our mind and body function.
In this highly sexualised society, it is regretful that we tend to equate the innate desire for love and intimacy with the need to have sex (Disability and sexuality; June 30).
Intimacy in a relationship is far more than just sex. It includes the physical intimacy of touching someone's hand, the emotional intimacy of sharing fears and secrets, the intellectual intimacy of knowing that we share the same opinions on a matter, and the spiritual intimacy of belonging to the same faith.
Sex is a gift that I would give only to my husband.
I need no helping hand in this, otherwise it would be a spoilt gift.
Sex is not a need that I would have died for in these years of singleness.
I applaud the efforts taken by married couples to seek help and to be counselled that intimacy can be creatively sought beyond sex.
Love is the greatest gift that everyone can give lavishly.
My faith informed my mind and heart that this broken body of mine has intrinsic value, no matter what others think or say.
It is time we progress beyond looking at seemingly vulnerable people with coloured lenses.
https://www.straitstimes.com/forum/letters-on-the-web/love-intimacy-go-beyond-sex

Original letter:

As a person born with a physical disability and diagnosed with Bipolar Disorder in my mid-twenties, I have the privilege to gain insights into how our mind and body function.
In this highly sexualized society that we live in, it is a regret that we tend to equate the innate desire for love and intimacy with the need to have sex 
(Disability and sexuality; June 30).
This desire to love and be loved, to know and be known is rooted in the heart of every individual, whether we are young or old, disabled or able-bodied, mentally sound or just need time to find our equilibrium in a society that is increasingly insane.
Intimacy in a relationship is far more than just sex. It includes the physical intimacy of touching someone’s hand, the emotional intimacy of sharing fears and secrets, the intellectual intimacy of knowing that we share the same opinions on a matter and the spiritual intimacy of belonging to the same faith.
Sex is a gift that I would only give to my husband, not any sexual partner. I need no helping hand in what is a gift, otherwise it would be a spoilt one. Sex is not a need, for I would have died in these years of singleness.
I applaud the efforts taken by married couples to seek help and to be counselled that intimacy can be creatively sought beyond sex. We acknowledge this aspect of intimacy to be fulfilled in the sanctuary of marriage while not being despaired that love perishes without sex. Love is the greatest gift that everyone can give lavishly.
My faith informed my mind and heart that this broken body of mine has intrinsic value, no matter what others think or say. It is time we progress beyond looking at seemingly vulnerable people with coloured lenses.

Good references:

1. https://www.family.org.sg/FOTFS/Blog/Marriage/What_I_Didn_t_Know_about_Marriage_before_the_Plunge.aspx

2. www.ibelieveinlove.com/emotional-closeness-in-a-relationship/

Submissions on “Ethical, Legal and Social Issues Arising from Mitochondrial Genome Replacement Technology”

Submissions on “Ethical, Legal and Social Issues Arising from Mitochondrial Genome Replacement Technology (MGRT)”

To the Bioethics Advisory Committee (BAC),

As a woman born with a genetic disorder Osteogenesis Imperfecta, in layman’s term “brittle bone disease”, I would like to pose the following questions to BAC:

1.     Since genes can be edited, can we eliminate ALL genetic disorders? If not, how is it fair that such genetic modification is offered to mothers with mitochondrial disorders but not to mothers of other genetic disorders?

2.     Where do we draw the boundary in achieving BAC’s seemingly noble goal of “preventing suffering not only for their future children, but also for the prospective parents”?

3.     How can BAC or our government prevent the “suffering” of people with acquired disabilities in later life, whether due to accidents, illnesses or old age, if indeed having a disability is equated with suffering?

David Lang, 60 years old, has three children who were born bright and healthy. His children were discovered to suffer from Niemann-Pick disease type C, a rare genetic disorder that causes the cognitive and physical functions of the three children to degenerate. One child died at age 10 while the other two have been left paralysed, unable to talk. Together with his wife Loo Geok, 58, they soldiered on. Mr Lang, who earns less than $5,000 a month, copes financially with the help of family members and church friends and also received money and gifts from strangers. Mr Lang said that his children’s ability to smile or respond a little already gave them a lot of joy (“3 kids in family struck by rare genetic disorder”; 20 May).

https://www.straitstimes.com/singapore/3-kids-in-family-struck-by-rare-genetic-disorder

What does BAC have to say to this couple whose joy now is to see their two remaining adult children able to smile and respond a little? Is parental love conditional such that when children are not as “normal” as before, they cease to be their parents’ beloved ones?

Family members are meant to “suffer” together. The sacrificial love of a family can weather the storms of life with the help of the society at large. We build a compassionate society not by playing gods but by helping one another through life’s upheavals.

MGRT is eugenic in nature. It promotes genetic discrimination in Singapore, at a time when we celebrate the abilities of people with disabilities (PWDs). It is hypocrisy to celebrate PWDs but on the other hand, seek to alter their genes to prevent them from even existing.

I was born with mutated genes that caused me to be born with fractures. I can be said to have “inferior” genes because I was born with a short stature and countless fractures such that my childhood was spent in a Children’s hospital. But I was gifted with committed parents who believe in choosing life for me even when I was called a “fragile doll” by medical staff. At birth, I was deemed untouchable and no doctor would have given me a good prognosis.

As medical technology advanced, I had my first surgery at age seven. Now I have rods and metal plates in my femurs. The vicious cycle of more fractures, more surgeries and prolonged periods of rehabilitation dominated my childhood and secondary school years. Despite that, I graduated with a degree in Social Work and Chinese Language and am now a private educator with the ability to impact lives. I use a wheelchair for greater mobility and to pursue a better quality of life. Using a wheelchair helped me to travel overseas, not only for leisure but also for mission trips.

Education and technology prospered my soul and enabled my body to function at its optimal level. I learnt to swim to build muscle strength. My health record is better than any person without a disability because I choose to take responsibility for my life. Technology can help to improve my life externally. To use technology to tamper with genes is to tamper with nature. The human body is too complex to let us foresee the consequences of tampering with what is unknown. As it is, none of us can even control our every breath.

Doctors know my biology but they know nothing about my life to decide if my life is worth living. I have proven every doctor wrong that a seemingly grossly handicapped baby is now leading a life of victory!

If genes can be readily edited, what have I missed?

Don’t healthy people get into accidents and become paralysed? Are their lives no longer worth living?

A New Zealand holiday ended in a horrifying accident and life in a wheelchair. But Jean Ling tells On The Red Dot how she returned to adventuring and found true love (“Left half-paralysed in a holiday crash, she walks at her wedding three years on”; 9 June).

https://www.channelnewsasia.com/news/cnainsider/paralysed-new-zealand-car-crash-jean-ling-wedding-10398902

Don’t we love stories of fortitude and know not the boundless magnitude of human strength in times of trials? Are genetically healthy people exempted from the stresses of life and the sicknesses that assail us at different stages of life? Even children are not spared of cancer. In pursuing a more genetically “perfect” version of ourselves, it makes it harder for us to accept any sicknesses or defects caused by accidents or old age.

Finally, children are gifts, not products. MGRT reduces people to their genetics. For people like me who have a genetic disorder, MGRT signals strongly that those who have “defective” genes are not welcome in our nation. Will these therapies be so costly that they exclude the disadvantaged, and may even exacerbate already existing domestic and global socio-economic inequalities? The moral cost of MGRT cannot be justified, no matter how noble the intended goal appears to be. Surely, we can put our limited resources to greater use.

My parents did not pass on defective genes to me. My late mother passed on perseverance and courage to me, to live a life that shines for others.

Let us create a society that looks to the welfare of children first, above the limitless desires and worries of adults. 

Yours Sincerely,

Serene Ho (Ms)

14 June 2018

I received an acknowledgement from MOH on 19 June 2018.

Dear Ms Ho,

Thank you for your submission to the BAC’s consultation on mitochondrial genome replacement technology.

Your personal story is inspiring, and I think it is so precious that in this debate, we also get to learn the perspective of individuals like yourself who live with a genetic condition. Thank you for taking the time to share your views with us, and for allowing us to publish your response in the final report. Secretariat will forward your response to the Committee, which I have no doubt will give careful consideration to your valuable inputs.

With warmest regards,

Charmaine 

Charmaine Chan
Bioethics Advisory Committee Secretariat

Harbourfront Centre, 1 Maritime Square, #11-23, Singapore 099253

Tribute to my late mum

This letter was sent to The Straits Times Forum but was not published.

The sheer determination of Madam Yong to shower her daughter with so much love so that Vivian can live longer in this world, reminded me of my late mum (“She ain’t heavy, she’s my baby: Mum’s devotion to 38-year-old daughter with neuromuscular disease; 7 May).

I was born with a genetic disorder called Osteogenesis Imperfecta, in layman’s term, brittle bone disease. The doctors told my parents that I might not live long after birth but no doctor could have predicted that I am now leading a more fruitful life than any prognosis given at birth.  I give the most credit to my beloved mother who gave me the most beautiful nineteen years of my life before she died of kidney cancer.

My mother was not highly educated but her dream was for me to enter university, find a job and support myself. She could not coach me for my Primary School Leaving Examination (PSLE) but she would sit beside me and encourage me to study hard. I could not envision a bright future for myself then as I used a wheelchair. Those were turbulent teenage years whereby I blamed my mother for my disability through no fault  of hers. But we shared the greatest intimacy as mother and child, as the best of friends.

I felt abandoned by her when she suddenly passed on during my GCE A-Level examinations. My Christian faith empowered me to not only choose life after her death, but to love and treasure this life that my parents had given me.

My mother did not pass on defective genes to me (“Bioethics committee seeks views on emerging genetic modification technology to prevent disorders”; 19 April). She modelled perseverance and sacrificial love to me that I would not trade anything for. Because she did not abort me, I had a chance at life. She loved me to the end and that inspired me to do likewise to the people around me.

I do not need genetic modification. I just needed a chance at life. 

Tribute to Mum

19 November would be 23 years since my mum passed away.

Each time I talk about her, tears would threaten to fall and I would pause to catch myself. Death has no more sting but separation is real. It was hardest for me when I came to Christ and I didn't even know if anyone spoke to her about Jesus in the hospital. I will trust God's sovereignty for He had already given me the second best gift after salvation; a mum who modeled sacrificial love to me since I first knew her...

In recent years, I have always wondered how she felt when I was born, fragile as bean curd. Would she have aborted me if technology was so advanced then? Deep in my heart I know she would not, because the responsibility of motherhood was very strong in her. I was her child, that was enough reason to bring me up. I am grateful to my dad too. If not for him, I know it would be impossible for my mum to give me the best care.

I can empathize how it is like to have a child with special needs. It is really tough. But isn't life tough for everyone?

I thank God that even after so many years of her death, all I have are beautiful memories of her. She did not die in vain. God made me a stronger person through her death.

19 years with mum. Short years but so full of love.

Love that was full of tears and joy.

This is love.

Let's rally to support those with special needs

The perseverance of navy serviceman and para-athlete Jason Chee inspires me (Against the odds, he triumphs; Oct 1).

His story is a reminder that anyone can acquire a disability in an accident, an illness or in old age. However, no disability can take away the intrinsic worth of a person nor stop him from maximising his potential.

It is heartening that the National Council of Social Service organised the "See the True Me" public education campaign to encourage the public to see persons with disabilities for who they are instead of the disability they have.

However, one of the reasons given by the Government to justify keeping the cut-off time of abortion at 24 weeks is to allow those mothers whose unborn children are found to have "structural abnormalities" to "consider the implications and make an informed decision as to whether to keep or abort the child".

On the one hand, we want to build an inclusive society. On the other, we seem to be cutting off persons with disabilities at its source.

I would have been labelled as grossly handicapped because my bones broke at birth. But my parents did not give up on me. With their love, with medical treatment and community support, I am now an educator with the ability to impact lives.

We should empower every citizen to rise up to his fullest potential, with or without disability. We should rally our society to support any family with a child with special needs.

By virtue of our humanity, we have value and every right to live, regardless of what we can or cannot do.

Every individual gifts us with precious life lessons, more valuable than money or medals. Let us learn to love sacrificially and build a more compassionate society.
http://www.straitstimes.com/forum/letters-in-print/lets-rally-to-support-those-with-special-needs

What's our value in an achievement-oriented Singapore?

People with disabilities, like everyone, DO NOT need to prove their abilities in order to be seen as worthy to live.

If we need to, what is going to happen to people with severe disabilities, those with terminal illnesses and the frail elderly?

By virtue of our humanity, we have value, regardless of what we can or cannot do.

Disability and Abortion

I am not my disability.  

I just happen to have a condition known as Osteogenesis Imperfecta (OI), or in layman’s terms, “brittle bones”. From birth till my late teens, my bones broke easily and I suffered countless fractures. I have a short stature and I use a wheelchair.  People do not cease to remind me that I am very different. However, God has assured me that I am uniquely made, just like any individual. The emphasis that people place on my disability does frustrate me. But what is God’s purpose for me as a person born according to His will?

Recently, I mourned the death of two unborn children. I learnt that two out of seventeen pregnant women who were Zika-positive last year, underwent abortions. To quote from the Ministry of Health (MOH) and the clinical advisory group (CAG) - "the consequences can be more serious if a pregnant woman is infected, as Zika virus infection can cause microcephaly in the unborn foetus of pregnant women." The website adds: microcephaly is a congenital condition in which the head size is much smaller than usual for a baby of the same age, race and sex. Microcephaly can be caused by a variety of genetic and environmental factors, such as Down Syndrome, exposure to drugs, alcohol or other toxins in the womb, rubella and a few other infections during pregnancy. There is no specific treatment for this condition.

Abortion was readily pushed out as an option. Is it hard to understand why these two mothers opted for abortions, given the fear and pressure?

In 1969, when moving the Abortion Bill in Parliament, the then-Health Minister Chua Sian Chin claimed that “it would be an act of kindness or even a moral obligation to avoid the tragedy and the serious repercussions to the parents, the child, and society alike by permitting abortion”. Conversely, he said that “it is an acknowledged social evil to countenance the breeding of defectives in society”.

One of the grounds that abortion was permitted under the Abortion Bill was the “eugenic ground”, where abortion was permitted if “there is substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped”.

One of the reasons given by the Government to justify keeping the cut-off time of abortion at 24 weeks is to allow these mothers whose unborn children are found to have “structural abnormalities” to “consider the implications and make an informed decision as to whether to keep or abort the child”.

Even today, the contents of pre-abortion counselling “may be adapted for women diagnosed with foetal abnormalities”.

I experienced great sorrow upon reading all these statements.  There is such a deeply entrenched fear and misconceptions about people with disabilities. I find it extremely saddening that many unborn babies are deemed to have no right to live and no future simply because they are diagnosed with defects, especially at a time when medical advances can be used to maximise their potential rather than strike them off from human society.

This is also an obvious show of double standards in our society.

On one hand, we recently celebrated the achievements of our Paralympic gold medallists like Yip Pin Xiu and Theresa Goh. We hold the annual Purple Parade to promote the inclusion of people with special needs.

Yet on the other hand, society sends the message that disabled children are unworthy of life, as a special group of people singled out for the option of abortion.

When I was born, I was "untouchable" because my bones would break at every touch. I could very well have been labelled a "grossly handicapped child" facing long-term severe disability and dependence. My life could have been terminated if my parents had received such a prognosis. But because medical technology was not so advanced in the 1970s, I had a chance at life. Through parental support, medical treatment and personal determination to excel, I am now an educator with the ability to impact lives. All unborn children with disabilities need, as I had, is the universal right to live.

The government of the United Kingdom is currently considering an Abortion (Disability Equality) Bill, proposed by Lord Kevin Shinkwin, himself a person with a disability.

In one of his speeches, Lord Shinkwin said, “I utterly reject this medical mindset that clings to the idea that a disabled baby is a medical failure to be eradicated through abortion. I beg no one for my equality. I know I have as much right as anyone to be alive.”

I could not agree more. As a person made in the image of God, I know my value and worth comes from God.

And while the thief comes to steal, kill and destroy the lives of children in our society, I know that my Lord Jesus came to not only give life, but to give life to the full (John 10:10).

It is true that people with disabilities like myself face special challenges in life, and parents expecting a child with special needs are bound to have concerns and fears. However, it was these special challenges that brought me to Christ and instilled in me priceless values. The perfect love of God drives out all fear (1 John 4:18). For God has not given me a spirit of fear, but of power and of love and of a sound mind (2 Timothy 1:7). That is why I can now speak up for the needy. Even people with severe disabilities are born to gift us with precious life lessons.

The Church must model our Lord’s example of unconditional love, regardless of how “able” or “disabled” anyone might be. We must believe in the purpose that God has for every person on this earth and rise up to support every family who have children with special needs. In doing this, we show our love for God, as well as love our neighbours as ourselves. 

True inclusiveness begins in the womb

This letter was sent to Voices@TODAY but was not published.

I agree with Social and Family Development Minister Tan Chuan-Jin and Nicholas Aw that the changing of mindsets is crucial in transforming low tolerance or acceptance of people with special needs into mutual understanding and respect ("New campaign focuses on greater acceptance for people with disabilities”; Feb 11, "Let us walk the talk on inclusiveness"; Feb 16). 

A study by Lien Foundation found out that while Singaporeans are supportive of the idea of inclusive education, it has not been borne out by action to the same degree ("S'poreans support inclusive education but do not walk the talk: Study"; May 30, 2016).  

As a woman with a physical disability, I am not surprised by the findings, because before birth, a child with a disability is already not accorded the same value as other unborn children. 

The Guidelines on Termination of Pregnancy state that "the contents of pre-abortion counselling may be adapted for women diagnosed with foetal abnormalities". The selective abortion of unborn children with medical defects is an indication of how people can fail to recognise the inherent dignity and value of people with special needs.

In October 2014, the Health Ministry referred to a routine foetal scan at 20 weeks of pregnancy to pick up structural abnormalities as one of the reasons to justify keeping the abortion time limit at 24 weeks. 

Senior Minister of State for Health Amy Khor added that keeping the abortion limit at 24 weeks "will allow these mothers some time to consider the implications and make an informed decision as to whether to keep or abort the child, without being rushed to meet a shorter cut-off time". 

The singling out of disabled unborn children to justify abortion is inconsistent with the Government's obligations to promote respect for the inherent dignity of disabled people under the Convention on the Rights of Persons with Disabilities, which Singapore ratified in July 2013.

There are legitimate concerns in raising a child with special needs but there is no legitimate reason to kill the most vulnerable member of our society. 

A "throw-away" culture will lead Singapore on a precarious path whereby the old and frail are deemed unworthy to live. True inclusiveness begins in the womb and mindset changes must be spearheaded by our Government.

15/365 Wonderfully made Serene

Dawn the photographer: Eternity is too high a price to pay for a comfortable life.

This sentence touched me and encouraged me to run this race on earth, with eternity already in the here and now. Thanks Dawn! 😘

Have to confess that I'm still rather conscious of my body. But praise be to God that I am now not ashamed to admit that this is my weakness. God knows the challenge and so He brings people to show me what I always don't want to see.

The world says, "Hide in shame. You look weird!" And the ignorant laugh.

God says, "You are indeed wonderfully made Serene!"😀❤

And the case is closed.

#fifteenofthreehundredandsixtyfive
#bodyimage
#wonderfullymade

Valuable life lessons to be learnt from special-needs child Vera

Mdm Tham Yin May gave birth to her daughter Vera after a pregnancy that saw poor growth and abnormalities detected in the child’s brain (“Caring for a special child: A working mother’s experience”, Jan 8).

It has been a path with many challenges and uncertainties. But Mdm Tham and her family have soldiered on, celebrating every milestone of Vera’s development. The intrinsic value of eight-year-old Vera is not dependent on her ability. She is precious the moment she was conceived.

Family life includes shouldering one another’s burdens and assisting those in need. Mdm Tham and her husband are very fortunate to have understanding employers.

Families with special-needs members require more support from the Government and the community. They may be in dire need of resources, without which some may resort to desperate measures such as abortion, suicide, divorce and so on.

Our individual happiness cannot be separated from the good of the community where we live. The common good requires helping anyone who needs help. Through this process, we cultivate love, affection and attachment for others.

The greatest gift we can give to anyone is love. Loving others as we love ourselves will make our country a better place to live in. Truly, Vera has taught us valuable life lessons.

http://m.todayonline.com/voices/valuable-life-lessons-be-learnt-special-needs-child-vera

8/365 Choose life

"Children like Vera are here to gift us with precious life lessons. She has certainly deepened my perception of life."

We should be pro-life because we serve a God who is the Giver of life. I'm so grateful for this article shared by this awesome Mummy, who reminds me of my own parents, especially my late mum.

I often wrestle with how to speak up for people with severe disabilities because I guess it must be very hard on the parents, on the caregivers. This heartfelt sharing by Madam Tham just reinforced what we always know.

Families with special needs just need more support. Without support, people may resort to desperate measures like abortion, suicide, even divorce etc.

I pray for more of such inspiring stories to be told.
I have read, heard and I know, that the weaknesses of man, can only be strong in an Almighty God.💪

Babies with structural abnormalities, you deserve to live and you will live, just like any other babies.

"What is the worth of such children — the weakest members of our society?

Here’s a poem Vera inspired me to write:
Without weakness,
how do we find strength?
Without darkness
how do we see the light?
Without sorrow
how do we savour joy?
Without silence,
how do we learn to listen?
Without fear,
how do we learn to be brave?
Without death,
how do we treasure life?
Without loss,
how would we know what we have gained?"

#eightofthreehundredandsixtyfive
#chooselife
#prolifeisprowomen

http://www.todayonline.com/lifestyle/family/caring-special-child-working-mothers-experience

Embryo screening is genetic discrimination

The emergence of newer technologies and the existence of pre-implantation genetic screening in other countries do not make it morally right for Singapore to embrace this procedure (“Three hospitals to offer embryo-screening technique in pilot study”; Nov 15).

The embryo is, at every stage of its development, a human being. Screening for normal, healthy embryos is immoral, as it leads to the destruction of defective embryos. It is in reality a search-and-destroy mission — the modern face of eugenics.

Genetic equality is pursued to increase the chances of a successful IVF cycle. Reproduction becomes a process of division by class, transforming parents’ unconditional love into an attitude of conditional acceptance.

What results is genetic discrimination and a willingness to discard those who are unfit. What kind of society are we creating?

As one with a genetic disorder, I am deemed to have defective genes compared with a person without a disability. I would have been discarded.

What message does pre-implantation genetic screening convey to existing parents of persons with special needs? That their decision to raise such a child was foolish and inferior when it actually showed courage and perseverance?

The pursuit of genetic equality will erode our willingness to treat the genetically impaired as humanly equal. Unless we admit and address our fear of and misconceptions about disability, our attempt to build an inclusive society is only skin-deep. 

http://www.todayonline.com/voices/embryo-screening-genetic-discrimination

Genetic discrimination in Pre-implantation Genetic Screening

This letter was sent to ST Forum but was not published.

The embryos are developing members of the human species, offspring of their parents ("Hope for fewer miscarriages with genetic screening" ; 15 Nov). 

In selecting embryos which are chromosomally normal, genetic equality is pursued to increase the chances of success in an in-vitro fertilisation (IVF) cycle. 

This pursuit for genetic equality gives rise to genetic discrimination that will widen the gap between the haves and the haves-not, making us unwilling to work with and care for those who are deemed to have inferior genes.

Assistant Professor Tamra Lysaght is right to say that the pre-implantation genetic screening (PGS) will cause stigmatisation of disability in our society. 

How is it right to compromise the equal dignity of persons with disabilities for the 'goal' to help couples conceive in cases where the woman's fertility is diminished or compromised?

How is it justifiable to eliminate embryos with abnormalities in the pursuit of the miracle of life?

I regret the deep-rooted fear and misconceptions of disability in the woman who terminated her pregnancy when she found out that her baby had Down Syndrome ("Criteria set for IVF embryo screening trial"; 15 Nov). 

I empathize with parents who courageously bring up their children with Down Syndrome. Truly your love does not count chromosomes.

In embracing PGS, we open the door to more forms of discrimination and create a hostile society for the vulnerable and the disadvantaged. 

We build a 'throw-away' culture which will one day conveniently discard the old and frail. 

This is not the SG100 vision that our nation can look forward to. 

From the Editor:

Hi Serene

Actually, our stories say that the screening doesn't screen diseases or disabilities, but abnormal chromosomes that will likely cause miscarriages. Also, screening of Down syndrome is not allowed. It's not the same as screening for diseases or disabilities, which is still not allowed.

So it's not a case of parents being able to screen embryos with inferior genes or diseases or disabilities, as what I'm reading from your letter.

Regards
Wy-Cin

Hi Wy-Cin,

Appreciate your response to my letter.

To screen for abnormal chromosomes means eliminating those embryos that don't pass the quality control.

We all know that people with Down Syndrome have an extra chromosome so to choose the embryos with the correct number of chromosomes is to discard those embryos that when allowed to grow in the right environment, will be babies born with Down Syndrome.

To screen and select is itself a discrimination.

How do you explain the Professor's response that it will cause stigmatization of disability in our society if you say it's not screening of disability?

Trial for screening of IVF embryos is eugenic

This letter was sent to ST Forum but was not published.

Scientifically and medically, the embryo is at every stage of its development a human being. Pre-implantation genetic screening is in reality a "search and destroy" mission, the modern face of eugenics ("Trial for screening IVF embryos to start soon" ; 11 Nov). 

According to Dr Christopher Chong, this screening can potentially reduce the number of abnormal babies, miscarriages, failures, reduce trauma for mothers as they can find out before pregnancy, compared to the anguish of discovering it during pregnancy over even after delivery. 

A human life would be eliminated when it fails the quality control. Isn't this based on parental and societal preference, just that the characteristic 'gender' has been replaced by 'degree of perfection'? 

Who will now leave their children's lives to nature's chance if defective genes can be detected in the laboratory? 

Furthermore, if chromosomal abnormalities account for more than half the miscarriages that occur, then the problem lies with this Assisted Reproduction Technology (ART) that goes against our natural body working. ART treatments not only pose ethical difficulties but is also intrinsically harmful to children conceived through it.  

The principle of freedom of conscience also requires that the government refrain from channelling the tax proceeds of those who conscientiously object to IVF into the procedure. 

 

Lastly, as a woman born with brittle bones, a genetic disorder, I testify to a life of resilience that comes from having a disability. My family, especially my late mother never regretted my birth.

Like what Prime Minister Lee Hsien Loong said, with many helping hands, persons with special needs can live full and worthwhile lives. No one deserves to be written off.

An open letter to PM Lee on true inclusiveness

Dear Mr Lee,

I thank God for your excellent health today, having seen you taken ill during the National Day Rally.

Your tenacity and perseverance to finish the speech in spite of your condition makes you a leader by example. 

I thank you for your support for The Purple Parade each year and the diligent effort of the government towards a barrier-free Singapore for people with disabilities (PWD). 

You said that with many helping hands, persons with special needs can live full and worthwhile lives.

I can't agree more because I am one of them.

On the day you were inaugurated as PM, you have declared to support this special community.

I thank you and all who have worked towards building a society where abilities are celebrated.

Truly, we have not shifted from focusing on a person's contribution to the society.

There are many PWD who have severe disabilities and it is a fact that they will not be able to contribute to our society in the way we would have wanted.

I am blessed to be alive because of good family support, the help of voluntary welfare organizations (VWOs) and the larger community.

I can now live a full and worthwhile life because of the many helping hands approach.

I am alive but I cannot say the same for other babies diagnosed with structural abnormalities.

During the spread of the Zika virus, abortion was readily pushed out as an option when no one can confirm that the baby with Zika virus would have microcephaly.

Even if the child is born with microcephaly, he is not unlike any child with a severe disability, deserving love, care and support like any other children without any disability. 

The Zika virus scare manifests the deep-rooted fear and misconceptions of disability.

On one hand, we celebrate the achievements of PWD and rightly so.

On the other hand, we are quick to dish out abortion to eliminate babies born with structural abnormalities.

It is the height of double standards to appeal to the routine foetal scan that is performed at 20 weeks gestational age to pick up structural abnormalities so that parents would have some time to "consider the implications and make an informed decision as to whether to keep or abort the child" as the reason for keeping the 24-week limit for abortion.

I remember myself crying when I first got to know that the contents of pre-abortion counselling is adapted for women diagnosed with foetal abnormalities.

Mr Lee, why is there no consistency in building an inclusive society, starting with the unborn?

Don't such parents deserve the same support from our government and the community?

It is a tragedy when our value as a human being is merely economic, rather than recognizing the inherent worth and dignity of every human life.

We will grow old, grow weak and may have accidents in life that make us unable to contribute to our society.

What then?

Do we trash ourselves in this throw-away culture that we choose to create?

I'm just a common citizen with no power, no fame, no status, no great achievement by the world's standards.

I have nothing to gain by speaking up for the voiceless.

I don't even know if you will get to read this letter but one thing I know, I cannot celebrate The Purple Parade, knowing that this inconsistency costs lives.

Let's wake up to this reality that discrimination is real for the unborn with structural abnormalities and that we do something about it.
We should have divine discontent in any matter that concerns life and death.

For those who determine that people with severe disabilities are better off being dead, I encourage you to watch The Drop Box movie.

Thank you Mr Lee for reading this long letter.

I believe in a government that is not hypocritical.

As the former President of the United States Thomas Jefferson rightly said, "The care of human life and not its destruction, is the first and only legitimate object of good government."

I sincerely hope that all the unborn will have equal opportunity to live in this place we call home.
Jesus bless you and I will pray for you.

Yours sincerely,

Serene

https://www.youtube.com/watch?v=yTQ2VTf5vWc