A journalist and parent carer on why words matter

Photos by Lela Beltrão

Katy Watson is currently in the process of moving – and not for the first time. The BBC journalist has previously reported news from Mexico and Central America, Washington DC, the Middle East and London. For the past seven years she’s been in Brazil, as the BBC’s South America correspondent. Landing on this continent as a mother of one, she now has four children including Otis, who has Down syndrome.

This month, the Watsons will relocate to Sydney, where Katy will cover Australian stories. That is, if she can make her way through the visa applications for her sizeable brood.

“One of the questions I was asked for Otis’ visa was, do you have a physical or intellectual disability that stops you being fully independent and taking a full-time job?” says the British journalist. “I wrote back saying ‘No, in all honesty, because I’m expecting him to be independent’. The biggest barrier to his independence is the fact that he’s two.”

Katy and her partner, Bob, are also parents to seven-year-old Wilfie, Isa, who’s four, and nine-month-old Sefi. “My neurotypical kids are also not independent and can’t get a full-time job,” says Katy. “The migration agents were like, for Otis, the answer is, ‘Yes’. And I’m like, well, we have to have an asterisk then. I cannot let this pass!” she laughs.

Since entering the disability space, Katy has become acutely aware of the language and assumptions that surround families like her own. And she’s doing all she can to set them right.

Here, Katy shares why her son’s surprise diagnosis rocked her life, how her perspective has shifted since he came along, and why we need more of our news reported by people with experience of disability.

Take us back to the day that you found out that Otis has Down syndrome…

So I wanted a homebirth. I wanted to avoid hospital, especially because it was the worst week of Covid for Brazil, and Brazil was really badly hit. My first was born in a hospital but it was very straightforward. My second was also pretty straightforward, so with this one I was like, I’m definitely having a home birth. They’re not that common in Brazil but if you get really good medical teams they are very open-minded. I remember thinking, what could go wrong?

Otis was due on World Down syndrome Day – March 21 – little did I know. That came and went and two hours later, he was born. It was a really fast birth and a bit of an emergency. I remember them saying, “You’ve got to do it in one push”. And I was like, “I can’t do that, I’ll do it in two!”

Otis was born a bit floppy. His breathing wasn’t great and he wasn’t thriving. The midwives we had helping us said his saturation levels were low, so we were transferred to the hospital. Bob was driving us there and I was looking at Otis and said to one of the midwives, “Oh, look at his feet. They’re a bit squidgy”. And she said, “You know that he’s probably got Down syndrome”.

I just went, “Right”. And then my life absolutely collapsed.

What do you remember from those early days with Otis?

He was in ICU for nearly three weeks and all I did was cry. People kept coming in and saying, “It’s okay. He’s going to be fine”. And I’d be like, yeah, that’s not why I’m crying. I’m crying for me. I honestly thought my life had ended. I thought I’d have this horrible child who would pull our family apart. I thought I wouldn’t be able to go to work – and I love work. I thought I wouldn't be able to be independent, I would have a burden. All of those things.

I would say I’m really open-minded. I used to work with kids with Down syndrome and I really enjoyed that, but when it landed in my lap, I didn’t want it. A lot of that came down to choice, because I kind of felt forced to have had him. I felt really betrayed because I went through the private system and there are ways of knowing. And that was the thing, for me. It was a shock.

If I’d known, I don’t know whether Otis would be here. Bob’s less convinced, but I’m not one of these people who at 12 weeks is very attached to a baby. Parents of a child with T21 feel really bad for saying things like this and they beat themselves up, but my honesty saved me. I did loads of talking therapy – I still do, every week. I have zero guilt.

How do you feel about Otis having Down syndrome now, almost three years later?

I love him to bits. I used to think about Down syndrome all the time – and I often still do, but it’s in more of a factual way as opposed to something really negative.

I guess I’m still quite scarred by the surprise element. That was just so awful, but has he ruined my life? No, not at all. He’s amazing. And it’s interesting because when he was born, I remember thinking, I’m a feminist. I do not need to take on disability advocacy. I am not interested in this. This is not what I want to do. But nowadays, I’m really angry that people treat Otis in a different way. That really bothers me.

I will advocate for any neurodiverse kids because, screw it, they’re here and why on earth should they not have equality?

Brazil is really, really inclusive. You can’t send a kid with disability to a special school as their main school. Wilfie, my eldest, goes to a school where there are two kids with Down syndrome in his year. And in Brazil, they do therapies for kids every week. Whereas in the UK friends with kids with Down syndrome don’t get them nearly as frequently.

Early on I was put in touch with a paediatrician who’s got an older child with Down syndrome. I remember crying, saying this is just the beginning – “He’s going to be autistic, he's going to be this and this…” and he was two weeks old. This paediatrician said, “Otis, tell your mother to chill out”. She’s super cool and a real advocate. So is Otis’ ENT, whose son has Cri du Chat syndrome. And Otis’ physio, ‘Aunty Mu’, who said to me, “Look, the first year’s tough, but I’m here for you and I’m here for Otis”.

There’s a real gang of people around us. I don’t know what other countries are like, but here, it’s just exceptional.

You thought that Otis’ disability would impact your work as a BBC foreign correspondent. Has it?

Careerwise, my bosses were amazing. They basically were like, “Just tell us what you need from us and we’ll work with you”. And I mean, in some ways, my job is not flexible because if there’s breaking news, I have to run. But when I’m working 15 hours a day on deployment, I come back to São Paulo and my time is my own. If there’s no breaking news and I want to take Otis to therapy then I can do that and it doesn’t really interfere with my life.

That said, I have an amazing partner who does more than his fair share and we have an amazing nanny. Cris saved me. She’d been with us for two years when Otis was born and when I totally collapsed, she just loved him from the word go.

I guess I worry more about the implications of me not being here. For example, Gaza, would I go? I would like to go, but I worry about death more than I used to because I want to make sure that Otis is okay before I leave this planet. I have to think more carefully about my deployments.

I do love my job and I don’t want to change it, but Otis has opened up different views. I think journalism – and especially being a foreign correspondent – can be quite blokey. The BBC has got far more women on air and that’s really good, but I do think we need people with disabilities in journalism and people with disability in their family. There’s a reporter with Down syndrome for Channel Four, which is amazing.

There was a story about a year and a half ago about a four-year-old girl, Liza, in Ukraine with Downs syndrome who was killed on her way to therapy. The BBC wrote this story really well – but two major media outlets did not. AP News reported that she “suffered from Down syndrome”, while the New York Times wrote that this girl’s death ended “a touching, loving effort by a mother to care for a child with a disorder, in peacetime and then during war”.

As I said on social media at the time, people don’t “suffer” from Down syndrome, they suffer from prejudice like this, assuming they suffer. And to say that her mother made a “touching, loving effort” to care for her is patronising and offensive. She loved her daughter like parents love any child – it wasn’t an “effort” and it wasn’t “touching”, it was parenting.

You would never say that about a neurotypical child, so I wrote to these media outlets and told them that you can’t say that sort of thing.

As a journalist, you know the importance and weight of language. How did you feel about the word ‘disability’ before you had Otis?

I don’t know whether I even had an opinion on it – but I’ve since been educating people. When I posted recently about how we need to say the word disabled, a friend said something like, “Oh, there’s a lovely word for it in New Zealand, which is ‘differently abled’.” And I said, “You know what, I thought that was all right, but it’s not alright. You just need to say disabled.” And she got quite offended by it.

It’s tricky, because you don’t want to be unkind – but you do need to educate.

One in five people have some kind of disability, so why would you not be engaged with that then? Everybody is engaged with racism and they should be, of course. Everybody's engaged with sexism, and they should be. So why are we not engaged with disability? Because it’s still seen as suboptimal – and this is the thing I’m having trouble with.

I still think we should all engage with disability and talk about these things, but for some reason, you’re seen as really ‘nice’ if you want to engage in disability, as opposed to this being normal.

You recently shared how Otis’ ENT thinks he’ll be going to university in the future. As a Cambridge University graduate yourself, how did this make you feel?

Would I like him to go to university? I guess it would be nice if he could do it. But if he doesn’t go, that’s fine. My experience with Otis has changed my view on things like selective schools. I don’t care when my kids go to Cambridge or not. That doesn’t bother me. You want to give your kids the best possible chances you can, but I now think about it in a much broader way.

It’s hard, because I don’t want to put down somebody who’s academic and wants to achieve naturally. But I just want my kids to be nice people. That’s what matters to me.

You can follow Katy’s story and work on her Instagram account.

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