I’m not going to be adding a cute photo of River to this. It isn’t an article about proving to the world how amazing he is or how happy he makes me, it isn’t an article about how he is worthy of his life and it certainly isn’t a ‘look what you’re missing out on’ piece. Actually, this isn’t really about him at all. I also didn’t write this to try and make anyone feel guilty, angry, sad or regretful. I wrote it because I agree with a woman’s rights to choice. I believed in it before I had River and I still believe in it now. Women have fought long and hard for their voices, and having a son who happens to have Down syndrome does not make those voices any less important to me.
Here is Tanzania, just yesterday my sister in law returned home from work and found her 7 year old son sat on their doorstop crying because he could wake his Nanny up, she is 19 years old. When Victoria went into her home she found her led on the bed unconscious and rushed her to hospital. It turns out she found out she was pregnant, was so scared and alone, that she drank poison. She drank poison! Imagine how she was feeling to do that. As abortion is illegal here and so is suicide, she is now in hospital and handcuffed to her bed. We don’t even know if she is going to survive, but an hour after getting to the hospital the police arrested her and there is nothing we can d about it. Can you imagine that happening in the Uk? It could go that way if we take away a woman’s rights.
Last week a Mumsnet thread was brought to my attention, and it is full of statements from women who have had a prenatal diagnosis of Down syndrome and are planning to, or have already had a termination. I can’t deny that it’s a really hard read for anyone who has a child with a disability, the Down syndrome community are angry because they feel that their children are being attacked. It’s hard to see past that anger when you are so emotionally involved.
I want people to see that Down syndrome is not the end of the world
I don’t want women to keep their babies because they are forced to. I don’t want babies like my son to be seen as a punishment, to be born into families who don’t want them and even put into institutions. It could set us back years! Gone are the days when people with Down syndrome are shut away and I would never want to go back to that.
I want women to keep their babies because they want to. I desperately want them to keep their babies, but I want them to want to keep their babies. I want them to know that having a child born with Down syndrome is a blessing, that their babies can have a good life, have something to offer the world and will bring pure joy to their family life. I want women to want their babies, to love their babies and to recognize their worth. When a woman is given a prenatal diagnosis I want them to think –
‘This isn’t what I planned but I’ve got this. It may be a different journey but it’s a journey I want to go on”.
I want women to feel, supported, strong and not judged. I want women to know that their babies will be incredible, and that their life will become incredible because they chose life for their child. I want women to remember River and not feel sad or scared, but excited and lucky. I want them to know that there are people there to support them if they need advice, to chat or to just cry. I want women to know that there are women who already have children with Down syndrome who they can ask questions and not feel judged. I want them to know that we are there to listen, encourage, support, educate and be honest, and not to tell them that they are awful people if they don’t want a child like ours. I want parents with children who have Down syndrome to forget about being angry and concentrate on the importance of educating.
So although that thread on Mumsnet was hard for me to read, it didn’t make me angry at those women. To be honest, it just made me feel sad. In the majority of cases you can feel the pain that these women are facing and how difficult it is for them. These were not accidental pregnancy’s, they were very much wanted right up until the point of diagnosis. Its heart breaking that society’s view of Down syndrome has caused women to feel that the perfect baby they had yearned for, suddenly isn’t so perfect at all.
It’s societies perceptions that needs to be changed, not the law
I can’t blame these families for feeling scared or upset. The picture that society has created about Down syndrome is horrendous. It’s outdated, ill informed and untrue, but never the less that’s how people view our children. Even those of us who now have children with Ds were uneducated once, and my vision of Down syndrome back then was nothing like the reality that I know now. Today people with Down syndrome are proving exactly what they are capable of, but reality is that when people think of them, those old fashioned images are what they see. It’s a hard image for those of us who know different to change.
I don’t have the right to judge, I never had to face that decision
I didn’t find out that River had Down syndrome until after he was already here. I never had to go through the fear, uncertainty and confusion, or decide whether my son had a right to be born or not. I am thankful for that every single day and the fact that I never had to go through that pain. It is also why I will never judge anyone for their choices, because it’s a choice I never had to make. I’m also not special enough or perfect enough to pass judgement on anyone else, and I won’t do it. I also believe strongly that we could quite easily have been on the same team. If those women writing those comments had a diagnosis after birth I have no doubt that after the initial fear and upset, they would be right by my side adoring their child and fighting to change the world for them.
There are struggles, but for me they are far outweighed by the positives
Having a child with Down syndrome is not easy, and that is not something that should be overlooked. Not everybody wants or can take that on. River will be dependent on me in some way for his whole life, there are many things that I won’t see him do, we will face struggles along the way and I have very real worries about what will happen to him when I am no longer here.
BUT whether people to believe me or not, he is the best thing that has ever happened to me.
Choice means choice, the right to choose either way
Something I also want to be understood is that choice works both ways, and at present it’s just assumed that choice means to abort. When people discuss a woman’s right to choose, it is always about her right to choose a termination without judgement.
If I respect someone’s right to choose to end their pregnancy, then I have every right to ask for the same courtesy back when I don’t end mine. At present when a woman is given a prenatal diagnosis, termination is expected and in most circumstances it is pushed. To be blunt about it, whether people want to admit it or not, the medical world is desperately trying to eradicate our children. I’ve heard of stories where a woman has decided not to have an abortion, yet every time she goes for an appointment she is reminded that she still has time. Basically, she is reminded that in this world her child’s life has no value and that they think she is making the wrong choice. Inmost cases they’re told how hard there life will be and overloaded with scary medical information, putting fear into women regarding conditions their child may or may not be born with. River has no medical issues whatsoever.
Choice is not a really a choice, unless it is an informed choice. If all information is not given, it just becomes an enforced decision
I hear often about women having the right to choose to terminate their child, but what about a woman’s right to keep her child? To keep her disabled child without judgement and without people telling her that she is making the wrong choice.
Providing up to date information should be mandatory, families deserve that. Equal information needs to be provided from both sides, medical and real life experience from families that are actually living it. Without this truth, then the medical world is doing both pregnant women and people with Down syndrome a huge disservice. There are many people with Down syndrome who are blowing medical theories and expectations of them right out of the water. This needs to be shown. And once a family has been given real information and has made a decision, then that should be respected, whatever is chosen.
One thing I will say, is that I do really wish women would just own their decisions. Honestly, it’s really painful for me to hear people saying ‘I did it for my child’. That they loved their child so much that they didn’t want it to be born with no value of life. They didn’t want their child to lead such a terrible existence that they had to terminate for their own good. What I hear is that you think River’s life is awful and that you would never want to put a child through that. You couldn’t be more wrong and I will continue showing my son to the world to prove that opinion wrong.
It’s funny that people with Down syndrome and their siblings are often assumed to be be suffering, yet that couldn’t be further from the truth
I hear the argument that it’s unfair on the siblings often, and that having a sibling with Down syndrome is going to have a negative effect on their lives. But statements from grown up siblings of people with Down syndrome prove otherwise, and so does the fact that 96% of them say they wouldn’t change their brother or sister for another. And most important of all is the fact that 99% of people with Down syndrome are happy with their lives and who they are. So I respect your right to choose, but I also ask you to own it. There are so many valid worries when you’re given the diagnosis, I’m not saying these concerns are not real. But the truth is that you just don’t want a child with Down syndrome, the responsibility, the struggles and the changes it will bring to your life. Your life. And that’s ok, it’s ok to not want that. I respect and understand why you don’t want that, but own your choice.
I get that’s it’s a coping mechanism, a way to feel less guilty about your decision and defend yourself. I get that it’s one of the hardest decisions you will ever make. But you are also disrespecting me and my son by devaluing his life.
By educating children and showing them that being different is ok, we really can change the world
It’s a difficult one for me because of course I wish people with a prenatal diagnosis would choose to keep their baby. I would love my sons disability to not scare people, to not make people think their lives had been ruined. I would love there to be more people with Down syndrome, for it to become more acceptable and not feared within society. I want that for my son, I want him to feel wanted and not that he is part of a group of people that doesn’t deserve to be here. But I understand why people fear having a child with a disability, I understand that not everybody will choose to take that on and I understand why.
So here’s what I want to happen and it’s a big task. I want society to change. I want society to accept people with Down syndrome and know their worth. I want people to be educated about disabilities, to accept people for who they are and embrace differences. I want children to be raised with other children who are different to them and learn as they are growing up that being disabled is nothing to fear. Being disabled or different does not make you any less worthy of life. Educating the young is how we change society, not by inflicting rules upon the already grown.
I want to see people with Down syndrome in real employment, having great educations and being included within society. Really included, loved and valued. What I want more than anything, is for society to stop looking at my son and seeing a mistake. He is not a mistake. He is far from a mistake.
I want women and families to be given the opportunity to make an informed choice, all the true facts and every side of the story laid out on the table. If that is achieved, then whether a woman decides to keep her baby or not, to put it bluntly, is not any of my business at all. The choice is theirs, nobody else’s and that’s the way it should stay.