A Family of four smile in a selfie

Should Disabled People Become Parents?

Our kids are 10 and 5 this month. This is an update of a piece I wrote on how we made the difficult choice to become parents.

My Wife and I had always wanted to have children together, we’d just never agreed exactly when. Parenthood is not for everyone, but having a family life is a basic human right. We all have some difficult choices to make to pursue this, but we all have a choice. I want to tell you a bit about how my wife and I made our choice to become parents.

I was diagnosed with Friedreich’s Ataxia, a progressive and incurable nervous condition, at 15 and was told to expect to ‘survive’ into my thirties. That was 28 years ago, thankfully, things have changed a lot since then. The expectations of and quality of life of disabled people has grown as we take back control of their lives.

There were so many things for us to consider. In life, we play the percentages, we assess the risks, look at what we can control and try to make our decisions accordingly. For someone with a disability, those percentages change considerably. As human beings, we sometimes rely on our intuition and don’t always make logical decisions. But there are no guarantees, none of us know what might happen to any of us.

But there were dark thoughts too. I had focused on eugenics and medical killing during my degree, so was aware of the very worst things that the State and ordinary citizens can do to disabled people when they are dehumanised. I felt sad that I would probably not know my children as adults. I feared they might become child-carers, missing out on their own childhood to care for an ailing parent. Perhaps they’d get bullied. I even wondered what kind of future they could look forward to in this terrible world. But there are no guarantees, none of us know what might happen to any of us.

But some things I knew:

  • I knew I would not want my parents to deny me a chance of life if they had had that choice before I was born
  • I knew from living with Ataxia that we must live for the moment and that fear should not stop you but be seized as an opportunity to do great things
  • I knew our children would have a small chance of being a carrier, they would not have my condition. Before we were married, we had tests to make sure that Helen did not carry the necessary genetic defect herself
  • I knew I was in a strong relationship, a good job and good network of support
  • I knew that we’d give our children a loving and happy childhood and bring them up to be exceptional people.

We decided we would start a family. Isabella was born in 2009. Becoming a parent changes everything. There is a whole new world of responsibilities and feelings. As with all new parents, I had to face up to my own mortality; a new child is a painful reminder that the wheel of life has turned and that we are not children ourselves anymore. There are sacrifices, grey hair and a lot of hard work, but such amazing and wonderful things happen when you’re a parent. There’s the Birthdays, the first words, the first steps, the first day of school, the nativities, the sports days, Christmases. Children are a pure light that shine on you, everything and everyone else. Soon after Bella started school, and as family life finally started to get a little easier, our Son, William was born in the Summer of 2014. Although a little bit wiser, we were plunged back into a world of sleepless nights and nappy changes!

My amazing Wife plays a very important role in our family. She provides the physical care for all of us and is a super Mum. It is important to me to do what I can to set a good example. With the right support, disabled people can be anything they choose: artists, inventors, lovers, leaders, adventurers, parents and Grandparent or champions!

One thing I didn’t realise, although they recognise you, children don’t start making memories until about four; all those sleepless nights, expensive family holidays all those bed-time stories – they won’t remember them! Spare a thought for your own parents and take lots of pictures!

Bella is 10 and Billy is 5 in a few weeks, and we aren’t planning on having any more kids. Being a Dad is the best thing I’ve ever done; our children make me proud every day and it is a privilege for me to know them. I stand by the choice we made to bring them into this world. I hope they will look back when they’re older and agree it was a good one.

Richard Brown

June 2019

4 Comments

  1. Excellent post. I didn’t know I had Ataxia when I had my children. I often think about whether I’d have made a different decision but that kind of thinking is extremely unprofitable.

    Like

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