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Frances and Baby Gammy; Living with a Disability

Monday, 1 September 2014  | Helen Joynt and Frances Joynt


One of the issues that has been relatively neglected in all the commentary about baby Gammy and commercial surrogacy is the implied assumption that while to abandon a Down Syndrome child after birth is disgraceful, it would have been completely morally acceptable for the child to have been aborted, even expected if the diagnosis had been made before birth. Richard Dawkins added fuel to the fire with his moral certitude that the responsible, moral thing to do would be to have an abortion and try again. 

Frances Joynt, who has Down Syndrome, and her mother Helen have something to say about this aspect of the case.

(You can also read our earlier article on commercial surrogacy written by Denise Cooper-Clarke.)

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In the early 1970s, I was a member of an Evangelical Alliance sub-committee looking at various issues including abortion. From the confident vantage point of my twenty-something years and single status, I was quite sure that abortion in the case of a known impairment of the embryo was not only advisable but responsible and right.

Over a decade later, when I became pregnant at the age of 39 years (it happened to be the International Year for Disabled Persons), the question arose far more personally. Should I have an amniocentesis to check for the presence of a chromosomal abnormality, and if such an abnormality were present should I have an abortion? I cannot answer this question for anyone else now, but at that stage, my husband and I were certain that we should do nothing to interrupt the development of this new life, given to us, as were our two previous children, by God. In the event, our wee daughter was born, having Down Syndrome. That was over thirty years ago. So how do you judge whether or not her life is worth living?

In those thirty plus years, our daughter has given much joy to her family and to many others around her. There have been times too when she has brought her share of anxiety. She has succeeded—for instance, being included in the Victorian State swimming team for the Australian Special Olympics National Games this year—and the acknowledgment of her success has delighted her family. She has also failed—being unable to achieve her desire to be a doctor, or to become a child care worker—to her distress as well as the distress of those around her. She gained a position (‘my dream job’) in the Student Call Centre at Melbourne University for 15 months until the money ran out. Now she is seeking work yet again. But failure has not been an excuse for not trying, and she has become both strong-willed and obstinate.

From an early age she has been strongly independent, insisting on the dignity of doing things on her own, even when her family has disagreed with her assessment of a situation, or wondered if her maturity or ability to judge her own safety is great enough to warrant the independence. So, since secondary school years, she has learnt to manage public transport, even when it means using three different means of transport each way on each day’s trip.

She has grown into faith in Jesus, delights in being a member of the community of believers, and longs to be able to minister to those around her, having unbounded confidence in her ability to do so acceptably. She has been blessed by finding Christian fellowships willing, to a greater or lesser degree, to encourage her ministry to others—through prayer, reading the Scriptures, visiting the sick, liturgical dance, and serving morning tea. (Mostly, their first thought is that she can minister to other disabled people.) People are encouraged by her sympathy and care, and her willingness to express this care when others are more hesitant.

We in her immediate family have been influenced in so many ways by her presence in our family.

When she was a pre-schooler, her brother, a ‘Preppie’, had a friend over to play. She was sitting at the table with the two boys drawing. “What a mess!” the other little boy said, looking at Frances’ drawing. “No, David,” said our five-year old son, “You don’t say that! You say, ‘Very good, Frances’, because she has done the best she could!” A rather startled David looked up, and said, “Oh! That’s very good Frances!”

For Christians, the core understanding of humanity is that we bear the ‘image of God’. In every generation, theologians focus on a different aspect of this. What we have learned over the past thirty plus years, is that this ‘image’ does not depend on physical or genetic perfection; it is not earned by the intellectual or physical prowess of the human being. Like all else with which come into this world, it is a gift of the Sovereign Lord’s grace. We see that image, albeit imperfectly, in each of our children as also in ourselves. 

Helen Joynt is a retired science, Hebrew and Biblical studies teacher, and editor.


Living with a Disability: My Words

by Frances Joynt

A little while ago I asked my mother the question that most mothers hesitate in answering:  “When you had me, did you think about abortion?” My mother said that the doctor had given her the option of doing that but she quickly said, “No.” I must say I am glad she had me, because GOD gave her to me as my earthly mother and I want to thank GOD for doing that. 

I always had to rely on government funding, my school teachers, and my family for support as I was growing up. This was very difficult for me because I always felt that other people were dictating my life. I think this also led to my twenty-one year reign of rebellion! I have been a Christian since I was a baby but it really wasn't until I was introduced to the Anglican church that I actually changed. Doors of opportunity opened up to me and I have been a member of the Anglican Church for nine years. My life has completely changed, changed in a very good way, because now I want to devote the rest of my life to honouring GOD and repairing my relationship with HIM but also to help other people who need my help. 

I was always hard to handle, stubborn and cheeky as I grew up but, of course, all kids are like that, especially when they turn two. But when it comes to caring for or raising a child who has an intellectual disability like myself, you need to think about what's in the best interest of the child before thinking of what many people say is inevitable: an abortion.  I am convinced that abortion on the whole is murder and is something that we should be making illegal all across the world. Even if you have a child at birth who has a disability of any kind, I ask that you raise that child just as you would any other, to treat him or her like everyone else around you, and to love them for who they are and not just for what they are. 

For anyone who lives with a disability, they immediately feel that they can take other people for granted and use their disability to get away with just about anything. As someone who has Down Syndrome, I can tell you that I have done this in the past but I don't want that to dictate my present or future. I can accept the fact that I have a disability but I refuse to believe that I am disabled, because I don't feel disabled, and really I don't like being labelled for the rest of my life. I always like to think that there is strength in weakness and that the word we should be using is SPECIAL. 

We do need more Special people today because I believe that we can make a difference in our families, in education, in sport (like Special Olympics), in the workplace and in our communities.  

So I hope this will encourage all mothers to think about what is more important: life or death? I am living proof of this. I would be happy to talk with anyone on living with a disability.  

Frances Joynt (preferred name, Francesca), who has Down Syndrome, is the 32 year old daughter of Helen and Robert Joynt, and is currently doing Certificate 1 in Work Education at NMIT Preston.

 


Comments

Kathy
September 2, 2014, 11:42AM
Excellent piece. I totally agree. My son who has Down syndrome has just turned 16. I had a couple of comments thrown at me about abortion when he was born. But hey he is just as entitled to a full life as anybody else. God knows what He is doing and I'm all for it.
Gordon Preece
September 8, 2014, 5:48PM
Inspiring piece from both of you; absolutely terrific. I used to drive a bus for kids with Down's Syndrome. They were great kids, very affectionate. I wonder where they are today and what they're doing. Bless you both for sharing your story.
Frances Joynt
May 23, 2017, 3:30PM
I thank you both for what you said, I am touched. Thank you.

I am now 35 years old and am working at Endeavour Foundation, Keon Park, as their Receptionist.

I am still standing my ground and refusing to let anyone take me or my disability for granted, I am a human being and no-one can stop me for being who I am. I also hope that you are doing the same.

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