Photo Credit: Damir Sagolj, Reuters.
The other night Four Corners aired a report by Debbie Whitmont about the Surrogacy Business in Thailand with particular respect to Australian families.
The future of surrogacy in Thailand has been well and truly rocked by the alleged abandonment of baby Gammy. For those of you unaware of the story; it was alleged that Gammy, who was born via a surrogate in Thailand to Australian biological parents, was abandoned and left with his surrogate mother due to being born with Down syndrome.
There has been a tremendous outpouring of support for baby Gammy and a continued interest in the case as there is still so much that is unknown. Baby Gammy’s story has raised so many important questions with respect to how children are born and raised in our modern world.
Inspired by baby Gammy; today I wanted to push all of the legal and ethical questions aside to focus on our societies’ perceptions of children with special needs and the freedom that comes with the acceptance of different points of views.
Baby Gammy’s birth has raised many questions in me and made me reflect deeply upon my own beliefs, thoughts, fears, misconceptions and behaviours. I put my hand up to say that “I freak out when I see a child with special needs in a supermarket”. I don’t want to stare or make a fuss, I don’t want to seem uncompassionate or disinterested and I often find myself awkwardly smiling and trying to gauge the response of the parents. I am genuinely unsure of how to respond in a way that doesn’t make anyone feel uncomfortable or unseen.
Then I got to thinking about how I respond to children without special needs in supermarkets. I never seek the interaction; I interact naturally and when the situation calls for it. If they speak to me I speak back, if they stare at me I smile, if they bump into me I make a joke about it.
I’m also guided by the parents, if a parent is in a bad mood and dealing with a misbehaving child I don’t think,
“Oh I better interact with this family somehow otherwise they’ll think that I am disenfranchising them from our community.”
If I’m coming up an aisle about to walk past a family who isn’t paying any attention to me; I don’t think,
“What am I going to do once I get to them? They are standing in-front of the frozen peas and I don’t want to appear rude by asking them to move. Should I talk to the child first before I ask the parents to excuse me? I don’t want them to think that I don’t care about their child. Maybe I’ll just come back for my peas.”
I would never behave in such an awkward, calculated and conspicuous way; I would just be myself, I would act naturally and I would take my cues from the situation.
This all got me thinking about how we respond to the birth of children without special needs and what would happen if we behaved the same way upon the birth of children with special needs? What if we let the situation and the context dictate our responses?
In the past I haven’t shouted out any loud messages like “special needs children are born perfect as they are!” I’ve no doubt taken pity, offered sympathy and sentiments of commiserations; I’m sure behind closed doors I’ve made broad generalisations about how a special needs child “would ruin your life”. And if those words didn’t come out of my mouth directly then I have definitely allowed them to be spoken in my presence unchallenged.
I can’t speak to the realities of raising a special needs child, and that’s kind of my point. I would argue that none of us could understand the complexities until we were in that situation. I wish to be clear that I am only speaking of these ideals to the context of our collective society.
A close friend of mine gave birth to a normal, run-of-the-mill, healthy child yesterday. When we all heard the news her Facebook wall was littered with sentiments of ‘congratulations’,‘ how wonderful’ and ‘how exciting’. I wondered if we would share the same sentiments if she gave birth to a child with special needs?
Raising any newborn child is difficult, I don’t wish for the sleepless nights and total upheaval that my girlfriend is about to experience upon myself, but I certainly wouldn’t think it appropriate to offer my sympathies to her. I strongly believe in her ability to be a mother to this child and I know that she has the support that she needs to do a good job.
If in a few days, weeks or months time she comments to me on how difficult she is finding it then my sympathy and support would be offered, but it is in a context of her seeking it. There are so many variables in how someone raising a child with special needs, or without, is going to be able to cope. The family and support networks available, access to medical care, education, practice, experience etc. Surely these things would make the journey of caring for a special needs child different from family to family?
So what if we offered special needs families the option to have us offer our excitement, our congratulations and our joy from the beginning? If it wasn’t appropriate because they told us they were struggling then we could offer them our compassion and support. But ultimately it would be their context and their needs that would guide us rather than our hypothetical projections of what it must be like for them.
I get that in practise this is awkward stuff, this is why I’d encourage us to have those conversations with our friends and families before such a situation arose. We are so good at asking the question “Would you go ahead with a pregnancy if you found out the child had special needs?” but rarely do we ask “If it happened, how would you like me to respond?”
To ease some of the awkwardness we could start having a different type of conversation behind their backs. What if when we were having those discussions with our mutual friends about their ‘situation’; we focused on the positive aspects that our loved ones were not yet able to see? What if we started to tell stories of hope and appreciation rather than pity?
“I heard about Bill and Jenny’s poor bub. Isn’t it dreadful? I can’t even image how difficult it is going to be for them. Their lives are never going to be the same; it must be so stressful for them. I don’t know how they are going to be able to cope.”
What if we offered something similar to these sentiments as a new response?
“Yes I don’t think I could cope but who knows how’ll they’ll find it. They are amazing people and I’m sure they’ll surprise themselves. I’m excited for them because if any family can thrive with a special needs child it’s them.
I know this is not the child they were expecting but what a blessing and joy he has been. I’ve already learnt a lot and I’ve had a lot of my misconceptions challenged, and he’s only 3 months old. This child could possibly be the greatest thing that has even happened for all of us, I am really looking forward to being a part of his life.”
We don’t know how things are going to turn out for Bill and Jenny, but the same is true for all families. Their family could break under the strain or they could thrive. As their friend what service do I offer them by focusing only on their potential future struggles? It’s not like if I don’t point out the potential difficulties to them that they’ll never know they exist. Why do we feel like “telling it like it is” is a helpful approach? You can’t “tell it like it is” about the future because there is no ‘is’ yet.
This is a really complex issue and I’m not suggesting that having a child with special needs is something that every one should choose or even consider. I have no judgement about the choices that parents make, every family is different and every set of circumstances is unique. Even as this story about baby Gammy unfolds it is appearing that his life has taken a much better turn than if his biological parents had taken him.
I’m simply suggesting that as a society rather than focus on the struggle as our first point of call that we allow space for an alternative more hopeful viewpoint for families. Surely we can offer optimism to others even in situations that we would find undesirable for ourselves?
Isn’t celebrating the birth of every child something that as a society we would want to aspire to? Maybe this is a moot point; maybe upon the birth of a special needs child within our sphere of family and friends we would extend our congratulations and appreciation very naturally. Until that moment comes we are only speaking in hypothetical’s.
We’ve all over heard or participated in a conversation with friends and family behind closed doors that has been sparked by a prenatal Down syndrome test. During these hypothetical’s, declarations about “a zero desire to raise a child if the test came back positive” as well as “abortion being the only sensible option” are made. I don’t think for a minute that the decision would be so cut and dry if ever that choice had to be made for real. But maybe it would be, I’m not judging either way.
What is there to judge about people making decisions about what is best for them based on their own personal situation, needs and beliefs? I dream of living in a society that is able to do just that. Because the more capable we are of pursuing our own happiness free from guilt and shame the sooner we’ll stop caring about the choices that others make that are different to our own.
It is the allowance of a different point of view that I am arguing for. When those hypothetical’s come up; I can voice an opinion that for me the experience of having a special needs child may be one I see as difficult and unwanted, but I can also offer an acknowledgement that this wouldn’t be true for every family.
The truth is also that some families are thriving and have found it to be the greatest blessing of their lives. Why not tell those stories with our family and friends in front of our children as well?
It is the blanket belief that we hold as a society hold that “special needs children are always less desirable than children without special needs” that I am rallying against. For some people the statement may be true, but equally for others it won’t be. So let us only declare which statements are true for us and let others decide for themselves.
Let us create a space where parents with special needs children can celebrate all that their children have enriched their lives with without us projecting our hypothetical fears upon them.
The reason we find it so difficult to muster hope and optimism for others is because we are searching for solutions to what for us is a hypothetical problem. We cannot possibly predict how others are going to rise to challenges or the amount of help and support that becomes available to them until we witness them in the situation.
We can never know the wonders or challenges that lay ahead in the future, just as we cannot know what drives the decisions of others and nor do we have to.
But to allow for a broad spectrum of difference in those decisions, and to offer people real freedom to make decisions that are different to my own which are free from my projections…well that’s a world that I’d like to welcome baby Gammy into.