Me and The Little Fire

Dear Matt Hancock

I am a mother, with two sons both of whom I love very much. I stand with Heidi Crowter, and I wanted to write to you to explain my reasons for this.

As you know, the law in England currently allows you to terminate a baby after 24 weeks, and indeed to moments before they are born, if they are found to have a “serious disability”. Serious disability is not defined by the law and has been interpreted to include Down’s Syndrome. Heidi, a young, capable woman with Down’s Syndrome wrote to you. She has said that she finds the law “deeply offensive” and is launching a legal battle against the government with regards to this. Your Department of Health and Social Care said; “any decision to terminate must rest on the judgement of the women and her doctors”. As I see it, there appears to be two predominant voices within this debate; those who believe it is an issue of women’s choice, and those who believe it is an issue of the human rights of those with disability.

I have two sons. Both are headstrong, determined, independent spirits and loving. As their mother, they need me to care for them, to teach them about the world, to love them and to value them. As their mother, I can tell you I value them equally; but it appears that the law does not. The reason for this is that one of them has Down’s Syndrome, and the other does not. Let me tackle the two issues predominating this debate in turn.

I am part of a rather small club of women, who have received the news that their child has a “serious disability” in the third trimester. Currently, in the media, I am hearing a lot of voices who purport to speak for me and my right to choose. I feel compelled to use my voice to say, the words I am hearing do not reflect my own views and appear to lack an understanding of the experience I went through. Those voices do not speak for me.

I was 34 weeks pregnant when I discovered my youngest son would have Down’s Syndrome. There had been no indications of this throughout the pregnancy, and so it came as a huge shock to us. My immediate reaction to the news was one of overwhelming grief, for what I believed I had lost, and a fear of the reality I was now confronted with. During this time of great vulnerability, I was told that my child would not be able to live independently, may never walk or talk, would suffer through surgeries to correct his intestinal issues and possible congenital heart defects, that he may not even make it to the end of the pregnancy, and that he would make our lives so much more challenging. Within the context of this fear, vulnerability, bias and prejudiced information, I was given “my choice”. I was given “my choice” three times. In the two weeks before my son was born, I was asked whether I would like to abort him three times. The law designed to “protect my rights”, made me imagine something so horrifying that I am not sure I will ever recover from the trauma of it. It also added to my fear by implying that Down’s Syndrome must be very, very bad indeed.

I am pleased to say that, with the strength and support of my family and friends, I continued my pregnancy and gave birth to a beautiful baby boy at 36 weeks and 3 days. A time at which he still could have been aborted. He is now 9 months old and thriving.

You speak of women’s choices; but when you present two options with such heavy bias and misinformation, you are not truly giving women a choice. This must change, for the sake of women and for communities like the Down’s Syndrome community.

The other key issue in this debate is the rights of those with disabilities.

You say abortion is a matter of moral conscience and not for the government to decide; but that’s not true, is it? It is no longer a matter of moral conscience once unborn babies without disabilities have reached 24 weeks and that is legislated for. In both of my pregnancies, my right to choose was enshrined within the law; but for my eldest, that right to choose only lasted until I was 24 weeks pregnant. At that point, the law stepped in to protect his right to life. My younger son was not afforded the same right. A change to the law which would give my two sons equal rights whilst in utero should not solely be a debate around women’s choices – It should also be a debate around the human rights of those with disabilities, like my son. The law signals to the world that this society does not believe that my youngest son had the same right to life. Aidan may never be able to do the things they said he wouldn’t, he may be able to do them all; No medical professional can predict the future of any child, extra chromosome or not. Regardless, he is not worth less.

The law is not fit for purpose; worse than that, it is discriminatory, inflammatory and barbaric. By not addressing this issue properly, you are saying my beautiful baby boy, Aidan, is worth less than his brother. That he is not as valuable. By shutting down debate under the guise of women’s choices, you are taking away the voice of people like my son, and you are disenfranchising them.  Giving him equal rights to his brother is not eroding women’s choices, it’s just giving him equal rights. He is Aidan and he is equally worthy. For these reasons, I’m with Heidi.

For more information on Heidi’s campaign, or if you would like to donate to the costs of her raising this legal challenge, please see this link.

If you agree with this letter, please also do share it on your social media platforms to help raise awareness of Heidi’s campaign.