谈谈图雷特综合征以及全民托儿服务可能的样子

嘿。

Hey.

我是萨娜·卡达尔，ABC国家广播电台《全在心中》节目的主持人，我有个问题想问你。

I'm Sana Khadar, host of All in the Mind on ABC Radio National, and I have a question for you.

你有没有想过别人脑子里在想什么？

Have you ever wondered what is going on inside someone else's head?

我经常思考这个问题，因为在《全在心中》节目中，我们探讨心理学、心理健康以及人们为何会如此行为。

I think about this lot because on All in the Mind, we cover psychology and mental health and why people behave the way they do.

别人是怎么做出这个决定的？

How do other people make this decision?

也许这是在向他人传递关于某人可靠性的信号。

Maybe it's sending a signal to someone about the reliability of someone.

这怎么可能呢？

How can this possibly be?

如果你对这个话题感兴趣，欢迎在ABC听播客应用中收听《全在心中》。

So if you like the sound of that, check out All in the Mind on the ABC Listen app.

你好。

Hi.

我是泰根·泰勒，这里是《生活要事》，您的故事塑造着全国的对话。

I'm Tegan Taylor, this is Life Matters, where your stories shape the national conversation.

去年的关键事件之一是澳大利亚托儿系统的状况。

One of last year's key stories was the state of Australia's child care system.

人员短缺，在一些令人震惊的案例中，还有虐待儿童的工作人员。

Staff shortages, in some shocking cases, abusive staff.

而在这一切之下，是人们普遍认为我们必须为孩子们做得更好。

And sitting underneath all of this, the sense that we need to do better by our kids.

关于改革，其中一个选择是普惠性托儿服务。

One of the options when it comes to change, universal childcare.

那会是什么样子？又该如何实现？

What would that look like, and how could it work?

接下来的二十分钟，我们将为您揭晓。

That is coming up in the next twenty minutes.

接下来还有：你的意识存在于身体的哪个部位？

Also ahead, where in your body do you reside?

少数科学家对头部移植的前景着迷，这让我思考的不再是技术细节，而是伦理问题。

A small number of scientists are fascinated by the promise of head transplants, which has got me thinking less of the mechanics and more of the ethics.

如果你的头被移植到另一个身体上，你还是你吗？

If your head was placed on a different body, would you still be you?

今天我们在这里的ABC国家广播电台探讨一些形而上的议题。

We're getting metaphysical today here on ABC Radio National.

但首先，本周早些时候，在英国电影学院奖颁奖典礼上，图雷特综合征倡导者约翰·戴维森出席现场，庆祝以他的人生为灵感的电影《我发誓》取得成功。

But first, earlier this week at the BAFTA Awards, Tourette's advocate John Davidson was in the audience to celebrate the success of a film inspired by his life called I Swear.

这部电影当晚斩获多项大奖，包括根据戴维森回忆录改编的最佳原创剧本奖，但典礼早些时候发生的一个时刻后来盖过了电影的成就。

The film ended the night with a stack of awards, including best original screenplay based on Davidson's memoir, but another moment earlier in the ceremony has since overshadowed the film's success.

当迈克尔·B·乔丹和德尔罗伊·林多走上舞台颁发首个奖项时，戴维森在观众席中大喊出一个种族歧视性词汇。

As Michael b Jordan and Delroy Lindo took to the stage to present the first award, Davidson shouted a racial slur from the audience.

德尔罗伊和我非常高兴能为电影制作中至关重要的一个环节颁发今晚的第一个英国电影学院奖。

Delroy and I are delighted to be presenting the first BAFTA of the night for a vital part of movie making.

我们在这里庆祝那位拓展了...

We're here to celebrate the artist who expand

与妥瑞氏症一起。

with Tourette.

那是他无法控制的无意识抽动，但意图无法抹去影响。

It was an involuntary tick that he had no control over, but intent can't erase impact.

在满是电影界最知名面孔的房间里，以及数百万在家观看的观众面前，这一幕引发了震惊与不适。

In a room filled with some of the most recognizable faces in film, and for the millions watching at home, the moment landed with shock and discomfort.

对于台上的两位黑人演员、礼堂里的观众，以及不了解背景的观众而言，戴维森随后发表了道歉，表示他深感羞愧，任何人听到这个种族歧视词后若认为‘抽动’是故意的，他都难以接受。

For the two black actors on stage, for the audience in the auditorium, for viewers who didn't know the context, Davidson has since issued an apology saying he's deeply mortified that anyone who heard the slur may have considered The Tick to have been intentional.

但这一时刻，以及BBC决定不剪辑播出版本中该词汇的决定，引发了激烈争论。

But the moment and the BBC's decision not to edit the broadcast to exclude the slur from the televised version has sparked heated debate.

我们如何真正为每个人创造无障碍和包容的空间？我们是否真正理解妥瑞氏症这样的病症的细微差别？

How do we make spaces genuinely accessible and inclusive for everyone, and do we actually understand the nuances of a condition like Tourette's?

今天，帮助我理清这些的是澳大利亚妥瑞氏症协会主席曼迪·梅西和妥瑞氏症大使西莫斯·埃文斯。

Well, here to help me make sense of it today is Tourette Syndrome Association of Australia president Mandy Maysey and Tourette's ambassador Seamus Evans.

塞缪斯，我先从你开始吧。

Seamus, I might start with you.

看到这一幕发生，你心里在想什么？

Looking at this play out, what's going through your mind?

我认为这真实地展现了妥瑞氏症及其实际表现方式。

I actually think it's a really perfect depiction of Tourette's and how it actually plays out and the reality of it.

我的意思是，这并不是什么新情况。

So we've got I mean, this is not a new situation.

我认识很多有同样抽动的人，事实上，在某些情况下，他们根本不敢出门。

I know many people with that same tick, and the truth is they can't go out in public in some instances.

有时候，他们甚至不得不关门，只为能出去给自己买内裤。

Sometimes they have to close the shop down so they can go out and buy themselves underwear for goodness sake.

所以我认为这真实地反映了妥瑞氏症的现状，我个人觉得根本不该做任何剪辑，应该直接播出，让大家看看这实际上是什么样子。

So I think it's a really accurate depiction of the truth of Tourette's and I personally don't think there should have been any editing, they should have just let them all out and then shown, hey, this is actually how it is.

我们刚拍了一部关于这个的电影，这就是现实。

We just made a movie about it, and this is the reality.

如果一个词，无论是否故意，仍然具有伤害他人的能力，为什么不进行编辑呢？

Why not edit it when a word, whether it's intentional or not, still carries the ability to harm?

如果这个个体拍了一部关于他生活的电影，这部电影可以获奖，但他的抽动和病情，是否适合直播播出呢？

Well, if it's if this individual, they've made a movie about his life and the movie is okay to win an award, but his tic and his condition, is it acceptable to be broadcast live?

我觉得这太双重标准了，我觉得这还不够好。

I think that's pretty double I think that's it's not good enough.

你知道的？

You know?

他们可以拍一部关于它的电影并获奖，却不允许他坐在现场观众中自然地抽动？

They're okay to make a movie about it and win an award, but they're not okay to have him in the actual audience and ticking live?

哦，不行。

Oh, no.

别让所有人都听到这个。

Don't let everybody hear that.

但他们刚刚拍了一部关于它的电影。

But they just made a movie about it.

有意思。

Interesting.

抱歉，我说什么了？

What sorry.

我想稍微深入探讨一下这个问题。

I'm interested to kind of unpack this a bit.

在现场有人做出了披露，但在家观看的我们并没有这些背景信息。

In the room disclosures were given, watching at home, we didn't have that context.

什么样的沟通方式可能帮助人们更好地理解这件事？

What kind of communication might have helped people understand it better?

我真的觉得这非常重要。

I I I do think it's I do think it's really important.

沟通始终是关键。

Communication is always the key here.

我认识很多患有抽动秽语综合征的人，那种会说出污言秽语的抽动，他们因此被逮捕、被打。

I know many people with Tourette's, with coprolalia, which is the swearing profanity tic, where, you know, they're arrested, they're beaten up.

在我的抽动过程中，虽然我没有秽语症，但我经常会向后点头，就像在跟人打招呼一样。

There have been many times with my tics, I don't have coprolalia, but I've got a head nodding backwards as if I'm saying good day to someone.

我曾在公共场合多次这样点头，人们却以为我在挑衅，甚至想跟我打架，说：‘喂，你盯着我干嘛？’

I've done that many times in public and people try and start fights with me because they're like, Oi, what are you looking at?

你想跟我聊聊吗，伙计？

You wanna talk to me, mate?

你知道的。

You know?

所以事后往往就会引发一场对话，哦，不。

So I think it then ensues a conversation after the fact, oh, no.

不，伙计。

No, mate.

我有妥瑞氏症。

I've got Tourette's.

现在，如果我们能提前预测一下，嘿。

Now, if we are predicting, hey.

我们刚刚拍了一部关于这个人的电影，他现在入围了英国电影学院奖，而他也有秽语症，所以当时确实应该放个提示声明。

This person we've just made a movie about and they're up for a BAFTA is going to be in the audience and they have coprolalia, yeah, there probably should have been a bit of a disclaimer.

就像任何电影播放前一样，如果有暴力主题或成人内容，都会在开头给出提示。

Just like before any movie, if there's any sort of violent themes, any adult themes, they say a disclaimer at the beginning.

所以我觉得，是的，他们应该先放个提示声明，然后再让所有抽动行为正常播出。

So I think, yeah, I think they should have done a disclaimer and then let all tics go to air.

曼迪，你是澳大利亚抽动症协会的主席。

So, Mandy, you're the president of the Tourette Syndrome Association of Australia.

你有三个孩子都患有这种病。

You've got three children with it.

当你观看这段视频以及随后的讨论时，你心里在想什么？

What's going through your mind when you're you're watching this clip and the subsequent debate?

这很难，因为我曾经身处那种情境——安静的礼堂里，台上有人在演讲，而我的孩子却对着台上的人骂脏话，全场观众都陷入了尴尬。

It's difficult because having been in that situation, a quiet auditorium where people are up on stage and my kids are hurling abuse at the people on stage, and everybody in the audience is having a bit of a moment.

无论你去哪里，几乎都会遇到这种情况：有人在抽动，而别人却在评判。

Pretty much anywhere and everywhere you go, you will find that there are people that, you know, tics are happening and people are judging.

你会变得有点厚脸皮。

You get a bit of a thick skin.

对我们家人来说，我知道言语的威力不像对很多人那样大。

Words for us as a family I know don't have as much of a power as for a lot of other people.

所以，当我大儿子转过身来，过去也曾这样看着我，直视着我的眼睛说：‘我希望你死，你这个笨蛋。’

So, I mean, when my eldest turned around to me, or has turned around to me in the past, and looked me dead in the eye and said, I hope you die, you bee.

你知道的，得癌症吧，你是个失败者。

You know, get cancer and you're a loser.

是的，这很伤人，但我也知道他并不是真心这么说，因为那是他的抽动。

Yeah, and it hurts, but I also know that he didn't mean it because it's his tics.

我有幸能分辨什么是抽动、什么不是抽动，所以我不会把它当真。

I have the privilege of knowing the difference, I guess, between what's a tic and what's not a tic, and I know not to take it personally.

但当你和妥瑞氏症生活在一起，作为妥瑞氏症患者的父母，你会被拳打、被咬、被扇耳光、被踢。

But, you know, when when you live with Tourette's, you get as as somebody a parent of somebody with Tourette's, you get punched in the face, you get bitten, you get slapped, you get kicked.

这些全都是抽动，并非故意的。

And they're all tics, it's not it's not deliberate.

是的，这很痛苦，但他们无法控制，这对他们自己来说也极其痛苦。

And yes, it hurts, but they can't help it, and it hurts them immensely.

当我们查看图雷特综合症患者的统计数据时，我要提及一个敏感话题：五名图雷特患者中有四人曾试图自杀，原因是社会孤立带来的压力以及与这种疾病共处的重压。

And when we look at the statistics for people with Tourette Syndrome, and I'm gonna touch on a sensitive subject here, but four out of five people with Tourette's attempt suicide because of the pressure of the social isolation and just the pressure of living with the condition.

所以我认为我们不应该淡化这一点。

So I think we should not detract from that.

但话又说回来，那是一个极其恶劣的词，一个可怕的词，仅仅想到那个对迈克尔和德洛伊说过的词，就让我觉得嘴里发苦。

But having said that, it is a terrible word, it's a horrible word, makes my mouth feel awful just the thought of saying the word that was said to Michael and Delroy.

因此，房间里每一位有色人种一定都感到极度难受，但他们在事前都已得到过警告。

So every person of color in that room must have felt horrific, but they were all warned beforehand.

我认为，如果非要追究责任，BBC和英国电影学院本该采取行动。

I think if we're gonna lay the blame in anybody's feet, the BBC and BAFTA should have done something about it.

他们不该把麦克风放在约翰坐的位置旁边，事后也不该不去关心每个人的状态。

They should not have placed a microphone right next to where John was sat, and they should have checked up on how everybody was after the event.

据我所知，事情并不是这样的。

And I don't think that was what happened from from what I understand.

但他当晚说的脏话不止这一个。

But it's not the only slur that he said during the evening.

他说了很多脏话。

He said lots of slurs.

只是这一个恰好被录了下来。

That's just the one that happened to be picked up.

其他脏话实际上被静音了，唯独这个被保留了下来。

That's the one that happened to be left in when others were actually muted.

我们能谈谈抽动吗？

Can we talk about tics?

丽莎，如果你在短信上想给我发消息，我的号码是0418226576。

Lisa, on the text line, if you wanna send me a text, my number is 0418226576.

丽莎问，你能问问你的嘉宾，这些不由自主说出的词，是不是在患者脑子里也存在，只是像我们这些没有这种状况的人一样，无法过滤掉那些不可接受的词？

Lisa's asking, can you ask your guest if the involuntary words are in the person's head, but unlike thus those of us without the condition, don't have the ability to filter out the unacceptable words?

西穆斯，西穆斯，我知道你说过你没有秽语症，这种极端形式的图雷特综合症，但你能谈谈抽动吗？

Seamus Seamus, I know you said you don't have coprolalia, this explicit version of Tourette's, but can you speak to ticking?

怎么了？

What what's going on?

是的。

Yeah.

每个人的大脑运作方式都是自我调节以维持生存，你的大脑会随机发出一些不想要的信号，每个人的大脑都有一个过滤机制来阻止这些不想要的信号，但患有抽动症的人这个过滤机制比较弱，就像想象一个没有锁的门，它会时不时地自己打开又关上，对吧？

So the way everybody's brain works is everyone's brain self regulates just to stay alive, and your brain will just fire off random unwanted signals, everybody has a gate to stop those unwanted signals but people with Tourette's just have a weak gate so it's like imagine having a gate without a lock it just kind of flies open and shut every now and then right?

所以这些每个人大脑都会产生的不想要的信息，有些会通过，有些则不会。

So those messages that are unwanted that everybody's brain does they fire through, some get through and some don't.

我的能力在于，我能够重新引导这些信号，因为我已经能够识别出这些信息，在它们中途经过时捕捉到，并尝试进行引导。

So my ability, I've been able to redirect because I've been able to identify that message, catch the message mid path, so to speak, and and try and and redirect it.

但这确实就像手臂上发痒一样，你知道吗？

But it definitely is like an itch on your arm, you know?

当你无意识地发痒时，你会不假思索地去抓挠。

Unconsciously, if you're itchy, you're gonna scratch without thinking.

你甚至不会注意到自己正在这么做。

You won't even notice you're doing it.

这并不是说我会重新引导每一个信号。

And that's not to say I redirect every single one of them.

很多信号还是会通过，很多人会说你在抽动，而我自己甚至都意识不到。

Many of them get through, and many of them many people say, you're ticcing, and I won't even realise.

它们就是自然而然地发生了。

They just happen.

是什么让这个‘闸门’变弱或变强？

What makes that gait weaker or stronger?

环境或你的心理状态会对你们有影响吗？

Are they does the environment play a role for you or your mental state?

焦虑、疲劳、压力这些东西肯定会增加你的抽动频率，让你抽动得更多。

Definitely anxiety, being tired, stress, and things like that will will increase your tics and make you tic more.

另外一点是，看到别人抽动、想着抽动、或者觉得别人在盯着你看。

The other thing as well is seeing people tic, thinking about tics, thinking people are looking at you.

所以我确实觉得，在我的重新引导过程中，心理因素起着至关重要的作用。

So I definitely feel there's a huge mental game at play when it comes to my redirecting.

你必须先在心理上战胜自己的大脑，但归根结底，你还是会抽动。

There has to be a, you know, a psychological element of winning your brain first, but at the end of the day, you tick.

抽动会自发出现，有时你能察觉到，有时却无法控制。

They fire through, and sometimes you catch them, sometimes you can't.

曼迪，作为父母，你是如何帮助孩子发展出应对这种状况的策略的？

Mandy, how have you managed that as a parent helping your kids develop strategies that can help them with this?

这真的很难。

It's really difficult.

作为一家人，我们一直很清楚，我们处于一个独特的位置，可以为抽动症发声。

We, as a family, have always been very aware that we are in a unique position to advocate for Tourette Syndrome.

所以我们努力活得响亮而自豪，这么说你能理解吗？

So, we try to live loud and proud, if that makes any sense.

我一直以来都说，实际上约翰道歉时说‘如果我所说的话冒犯了你，我很抱歉’，这引发了大量争议。

I have always said, and there's been a lot of controversy actually with John's apology when he said, I'm sorry if what I said offended you.

人们说这并不是他在承担责任。

And people said that wasn't him taking responsibility.

但当你抽动时，你是无法控制它的。

But when you tic, you have no control over it.

你可以为伤害别人的感受而道歉，也可以为身体上伤害他人而道歉。

You can apologize for hurting someone's feelings, you can apologize for physically hurting someone.

但你不应该为抽动而道歉。

You shouldn't actually have to apologize for ticcing.

人们不会因为坐轮椅而道歉，也不会因为失明而道歉。

People don't apologize for being in a wheelchair, people don't apologize for being blind.

所以，抽动在很大程度上也是一种残疾，但人们不应该为此道歉。

So, tics are very much disabling in the same way, but they shouldn't have to apologize.

因此，我始终努力区分：为造成的伤害道歉，但不要为抽动道歉，因为你无法控制它。

So I've always tried to make the distinction that apologize for the hurt, but do not apologize for ticcing because you can't help it.

你要学会变得坚强，因为人们总是指指点点、盯着你看，或者问你为什么你的孩子这样。

You grow a thick skin because people are always pointing, staring, or you why is your kid doing that.

我最小的孩子在小学二年级时出现了秽语症。

My youngest developed coprolalia when they were in grade two at school.

他们嘴里说出来的词，是你不希望任何二年级孩子说的。

The words out of their mouth are words that you don't want to hear any kid in grade two saying.

但学校处理得非常好。

But the school handled it beautifully.

但这需要不断倡导、不断争论、不断与学校开会来缓和局势，而且这种持续不断的教育需求从未停止。

But it's a constant advocating, constant arguments, constant meetings with the school to try and smooth things over, and just that never ending need to educate.

您正在收听ABC广播国家台的《生活要事》。

You are listening to Life Matters here on ABC Radio National.

我是特根·泰勒，正在与澳大利亚抽动症协会主席曼迪·梅西以及澳大利亚抽动症协会的公众演讲者和倡导者西缪斯·埃文斯交谈，讨论在BAFTA颁奖礼上发生的事——一位患有抽动症的男士因一部关于他生活的电影而受邀出席，但他的出席却被一个被麦克风录下的抽动所掩盖，当时两位黑人演员正在台上，而那个抽动说出的是一个种族歧视性词语。

I'm Tegan Taylor chatting with Mandy Maysey, who's the president of the Tourette Syndrome Association of Australia, and Seamus Evans, who's a public speaker and advocate with the Tourette Syndrome of Australia, talking about what happened at the BAFTA's where a man with Tourette Syndrome who was there because they'd made a movie about his life that was celebrating has sort of been overshadowed by a tick that was caught on a microphone, which was a racial slur that happened while two black actors were up on the stage.

以及在为像抽动症这样的人群创造包容空间的同时，平衡这个词所造成的伤害和已带来的痛苦。

And just balancing this inclusion space for people with a condition like Tourette's and also the harm that that word can cause and has caused to people.

在短信留言中，你们正在告诉我你们的想法。

And on the text line, you're telling me your thoughts about it.

梅丽莎说，我不认为抽动症患者的利益高于黑人演员的利益。

Melissa says, I don't think the Tourette person's well-being trumps the black actor's well-being.

在那之前，我们已经听过塞缪斯的看法了，曼迪。

We heard Seamus' take on this before, Mandy.

你对此有什么看法？

What do you say to that?

我不是有色人种。

I'm I absolutely I am not a person of color.

我不能代表有色人种发言。

I cannot speak for people of color.

我明白这个词是极其痛苦的，我无意淡化任何听到这个词的有色人种所感受到的痛苦和伤害，但关键在于意图。

I do understand that the word is an incredibly painful word, and I'm not trying to detract from the upset and pain that was caused to everybody, every person of color that heard that, but it is about intent.

两件事可以同时存在。

Two things can exist in the same space.

我们确实必须意识到造成了伤害，但同样地，我们也必须接受约翰的抽动是无心之失这一事实。

We do have to be aware that hurt was caused, but in the same vein, we also have to accept the fact that the person ticking, John, did not mean it.

那并非有意为之。

It was not intentional.

那天晚上在场的每个人都看过这部电影，因为他们都是投票成员。

Everybody in that room on the evening had watched the film because they were all voting members.

所以每个人都看过这部电影，大家都清楚约翰的能力。

So everybody had seen the film, everybody was well aware of what John was capable of.

BBC和BAFTA过去都曾与约翰合作过，BBC以前就和约翰合作过。

The BBC and BAFTA have worked with John in the the BBC has worked with John in the past.

BAFTA非常清楚他有犯罪记录。

BAFTA were well aware that he has cop pro.

我认为本可以做很多事情来保护所有相关人士。

I think there's an awful lot of things that could have been done to protect everybody concerned.

我认为值得指出的是，我们三个人都不是非裔美国人。

I think it's probably worth calling out the fact that none of the three of us are African American.

是的。

Absolutely.

白人在谈论我们没有切身经历的事情，有人在文字留言中指出了这一点。

White people talking about something that we don't have lived experience of, and someone's called this out on the text line.

我认为，为了让这个关于图雷特综合征的环节更加全面，应该邀请一位非裔美国人参与讨论，听听他们的观点。

I think it'd be great for this segment on Tourette's to have an African American in the discussion to hear the other side of the argument.

我要指出，确实有一些创作者对此发声了。

I will say there have been some creators who've spoken out about this.

我想播放一段来自一位患有图雷特综合征的黑人女性在社交媒体上的发言。

I do wanna play a clip from a black woman living with Tourette's who posted on social media.

她叫希拉·阿马米亚。

Her name's Sheila Amamia.

这是她的一些原话。

This is what some of what she had to say.

铜语症会导致不由自主地咒骂和不当的抽动。

Copperlalia causes involuntary swearing and inappropriate tics.

这可能包括种族歧视词汇、侮辱性用语等。

This can include the n word, slurs, etcetera.

我是一名黑人，就连我也会出现包含种族歧视词汇在内的抽动。

I am a black person and even I have the n word tic and slurs as tics.

这是否是因为像这样的情况，我很少看到人们谈论它？

Is This something I don't see many talk about because of situations like this.

这是一件令人失望的事吗？当着整个观众的面在公共场合发生，就该闭嘴吗？

Is it a disappointing thing, shut up, that it happened in public in front of that entire crowd?

迈克尔·B·乔丹和其他主持人有权利感到不满，尤其是如果他们并不知情的话。

Michael b Jordan and the other presenter have the right to be upset, especially if they were not aware.

然而，我们需要理解和自我教育。

However, we need to understand and educate ourselves.

感到被冒犯是可以理解的。

It is okay to be offended.

闭嘴。

Shut up.

但绝不能做的，是带有能力歧视，试图让人觉得患有妥瑞氏症——特别是患有秽语症的人——是有意说出这些抽动的。

But what it is not okay to do is be ableist and try to make it seem like people with Tourette's, specifically those with coprolalia, say their tics on purpose.

所以这就是谢拉·阿马米亚，一位患有妥瑞氏症的黑人女性，在社交媒体上谈论这件事。

So that is, Shayla Amamia, a black woman living with Tourette's, talking about it on social media.

实际上，我强烈推荐你去看看她的频道，如果你想获得更多见解的话。

Actually, really recommend you check out her channel if you want some more insight.

她对这个问题非常有思考。

She's really thoughtful on this.

又有一条留言进来，我想问问，患有抽动症的人能否选择自己的话语？

Another text coming through, I'd like to ask if people with Tourette's are able to select their words.

我知道他们会发出不由自主的声音和动作，但他们能过滤吗？

I understand they produce involuntary sounds and movement, but can they filter?

西默斯，你之前谈到了一些你的经历。

Seamus, you talked a bit about your experience before.

曼迪，你能不能从你孩子的情况出发谈谈这个？

Mandy, do you wanna speak to that from what your kids deal with?

是的，当然。

Yeah, absolutely.

而且，作为我们与抽动症协会一起开展的教育工作的一部分，我们在学校进行教育时经常会谈到这一点。

And also, as part of the education process that we do with the Tourette Syndrome Association, we talk about this a lot when we're trying to educate in schools.

尤其是秽语症，其使用的禁忌词更多与情绪相关，而非词汇本身，因为这些词在我们大脑中是储存在情绪区域的。

So, the coprolalia especially is based very much Taboo words are based more in relation to emotion rather than vocabulary in our brains, that's where they're stored.

而妥瑞氏症的一个特点就是会有大量侵入性想法，正如塞缪斯之前所说，神经通路并不会储存这些想法。

And one of the things that we have with Tourette Syndrome is there are an awful lot of intrusive thoughts, and as Seamus was saying earlier on, the gait doesn't hold the thoughts.

我们的大脑中存在过多的神经递质，它们会涌入神经通路，而通路无法应对这种过载。

We have an excess of neurotransmitters that flood the gait, and the gate can't cope.

这些侵入性想法往往是：此刻我最不该说的会是什么？

The intrusive thoughts are, what's the worst thing I could say at this point?

天啊，如果我说出约翰在书里提到的那些对女王的不敬之词，那该多糟糕啊？但他一路上都在想：如果我真的对她说出来会怎样？

Oh my God, wouldn't it be awful if I said John says in his book, he called the queen some awful things, but he was thinking on the way there, what happens if I say that to her?

如果我对她说出这些话会怎样？

What happens if I say this to her?

在BAFTA颁奖典礼当晚，对他来说情况也完全一样。

It would have been exactly the same for him the night of the BAFTAs.

但秽语症的问题在于，深入大脑时，是在触及——抱歉。

But the thing with coprolalia is that reaching into the brain is reaching Sorry.

让我重新开始。

Let me start again.

因为这是个禁忌词，且根植于情感，所以会带来更大的多巴胺冲击。

Because it's a taboo word and it's based in emotion, there is a bigger dopamine hit.

患有抽动症的人有一个特点：我们的多巴胺水平非常低，会非常迅速地消耗掉多巴胺。

And one of the things that people with Tourette Syndrome have is a very very low We burn through dopamine really, really quickly.

由于多巴胺被迅速耗尽，你会不断追逐更多的多巴胺，因为你感到压力、沮丧或过度兴奋。

And because that dopamine is burnt through, there's that never ending chase for more dopamine because you're stressed, because you're upset, because you're overexcited.

多巴胺被消耗殆尽，因此你需要某种能刺激多巴胺释放的东西。

The dopamine is burnt up, so you need something that's going to hit the dopamine.

于是强迫性想法会出现，它们会说：如果我们说了那句话，会不会很糟糕？

The So obsessive thoughts come in and they say, wouldn't it be awful if we said that?

这个闸门本应阻止神经递质……呃，它其实并不能完全阻止。

The gate stops the neurotransmitters from, you know, stops doesn't stop them.

能引发最多多巴胺的词语，是那些与你情感紧密相连的词。

And the words that create the most dopamine are the ones that are linked to your emotions.

因此，会出现那些禁忌词汇，因为它们能产生多巴胺，从而调节神经系统，让患有图雷特综合征的人感觉稍微舒服一些。

Therefore, it's the taboo words that are going to come out because that's going to create the dopamine, which is going to regulate the nervous system, which is going to make the person with Tourette's a little bit more comfortable.

所有这些过程都在大脑中发生，而患者本人并不能控制它们。

All of that goes on in the brain without the person with Tourette's actually being in control of it.

所以你无法控制它。

So you can't control it.

许多抽动是情境性的，因此会出现那个N字头的词。

A lot of tics will be situational, hence the n word.

如果是一个体重严重超标的人，那么抽动中就会出现与体重相关的词汇。

And if it was an incredibly overweight person, then there would have been something related to weight in the tic.

如果舞台上有一位烧伤患者，抽动中就会出现与毁容或疤痕相关的词汇。

If there was somebody with burns up on the stage, there would have been something related to the disfigurement or scars.

如果有人坐在轮椅上，抽动就会涉及无法行走的内容。

If somebody's in a wheelchair, it'll be something about not being able to walk.

这正是大脑的本性在说：别说了，别说了，别说了，别说了。

That's just the very nature of the brain saying, don't say it, don't say it, don't say it, don't say it.

这就是它的运作方式。

And that's how it works.

西穆斯，不管好坏，这一集已经将妥瑞氏症推到了聚光灯下。

Seamus, for better or worse, this episode has brought Tourette's into the spotlight.

你希望人们从中了解和理解什么？

What do you hope people take away and understand about it?

我认为，让每个人更好地理解人类以及人类所经历的一切，真的非常重要。

I think it's really important that everybody gets a better understanding of human beings and what humans go through.

之前有一条短信说，一个人的冒犯并不能凌驾于另一个人的感受之上，我认为你无法比较痛苦，这一点适用于所有人类。

Earlier, there was a text message says about the someone's offense doesn't someone's feeling doesn't trump someone else's feelings, I don't think you can compare suffering, and I think this goes across the board with all human beings.

我们每个人都在经历自己的小小旅程，都在经历作为人类的独特体验，我认为彼此友善非常重要。

We're all going through our own little journey, and we're all going through our own human being experience, and I think it's really important to be kind to one another.

我认为，最重要的是，我知道这么说听起来有点傻，但少一些评判，多一些善意。

And I think more than anything, that's I mean, I I know it sounds silly to say that, but I think less judgment, more kindness.

非常感谢你们两位今天来参加我的节目。

Thank you so much both of you for joining me today.

曼迪·梅西是澳大利亚抽动症协会的主席。

Mandy Maysey is the president of the Tourette Syndrome Association of Australia.

西莫斯·埃文斯是该协会的公众演讲者和倡导者，我们刚刚听了曼迪谈到这种综合征对人们心理健康造成的负担。

Seamus Evans, public speaker and advocate with the association, and we heard Mandy talk about the mental health toll that this, syndrome can take on people.

如果这个故事触动了你，请寻求帮助。

If this story has brought up stuff for you, reach out for help.

澳大利亚抽动症协会网站上有大量资源。

Tourette Syndrome Association of Australia has lots of resources online.

你可以搜索这些资源。

You can search them.

你也可以随时拨打131114或Beyond Blue的130224636。

You can also always call 131114 or beyondblue, 130224636.

接下来，在ABC国家广播电台的《人生大事》节目中，如果我告诉你十年后，孩子们会去当地公立学校上日托，你会支持吗？

And coming up next here on Life Matters on ABC Radio National, if I told you that in ten years' time, kids would be going to day care at their local public school, would you be on board?

每天工作日13:30，锁定ABC国家广播电台，让你的下午更精彩。

Smarten up your afternoons on ABC Radio National each weekday at 01:30.

星期一是科学节目。

On Mondays, it's the science show.

每个星期二，我都问：这是啥？

Every Tuesday, I ask, what the duck?

星期三是科幻小说。

Science fiction on Wednesdays.

全部都在

All in

星期四是心灵话题。

the mind on Thursdays.

星期五则是：这是什么皮疹？

Then on Fridays, what's that rash?

还有实验笔记。

And lab notes.

你带午饭吗？

You bring the lunch?

我们带来科学。

We bring the science.

我们会带来科学。

We'll bring the science.

工作日早上1:30，敬请锁定ABC国家广播电台。

01:30 weekdays right here on ABC Radio National.

澳大利亚正面临一场关于150万 enrolled 在托儿服务中的儿童的反思时刻。

Australia is having a reckoning moment for the 1,500,000 children enrolled in childcare.

你已经听过那些骇人听闻的故事：一个被利润主导、被掠夺者渗透、长期人手不足的体系，最终导致我们的孩子被抛在身后。

You've heard the horrific stories, a system dominated by profit, infiltrated by predators, chronic staff shortages, ultimately, our kids being left behind.

在过去一周里，参议院就澳大利亚早期儿童体系的质量与安全举行了听证会，报告预计将于下月底发布。

Over the last week, there's been hearings at a Senate inquiry into the quality and safety of Australia's early childhood system, and the report is due at the end of next month.

一些团体希望在现有托儿体系之外，为补贴性照护提供更灵活的选择。

Some groups want more flexible choice for subsidized care outside the existing day care system.

另一些人则希望彻底重新构想整个体系。

Others want to reimagine it entirely.

提出的其中一个方案是普惠性托育。

One of the options put forward is universal child care.

那这意味着什么？

So what does that mean?

这能实现吗？

Is it achievable?

它会是什么样子？

And what would it look like?

Georgie Dent 和我在一起。

Georgie Dent is with me.

她是育儿倡导组织“The Parenthood”的首席执行官。

She's the CEO of The Parenthood, a child care and parenting advocacy organization.

该组织积极推动普惠性托育体系。

It's behind the push for a universal child care system.

Georgie，首先，你能记得自己的电话号码吗？

Georgie, first things first, can you remember your own phone number?

早上好。

Good morning.

是的，在大多数日子里，我可以。

And yes, on most days, I can.

但我

But I

我懂，因为我以前也处于过那种记不住的状态。

I feel you because I have been in that position before where I couldn't.

我们来谈谈托儿服务。

Let's talk about child care.

全民托儿服务，意思是免费的吗？

Universal child care, does that mean it's free?

我认为当我们谈论全民体系时，最好参考一些我们现有的全民体系，比如学校或医院。

So I think when we talk about a universal system, it's useful to think about some of the existing universal systems that we have, and so, for example, with schools or hospitals.

大多数人对教育体系都很熟悉。

And so most people are familiar with the schooling system.

如果我们花点时间看看这一点，无论你住在哪里，只要你的孩子到了上学年龄，当地学校就会有一个学位可供他们入学，而且注册过程也很简单。

So if we look at that for a minute, wherever you live, if you've got a child that is at school age, there is a position available for them at the local school, and enrolling them is simple.

在澳大利亚大多数公立小学，家长需要支付一些费用，但金额很小。

And at most of the public primary schools around Australia, there is some fee that parents pay, but it's nominal.

我们并没有要求家长承担学校运营的全部费用，因此这种方式要实惠得多。

We're not asking parents to fund the full operating of schools, and so it's far more affordable.

当我们思考一个普遍的早期教育和保育体系可能是什么样子时，我们会想到几个关键原则。

When we think about what a universal early education and care system could look like, we think about a couple of key principles.

它必须是安全的、简单的、可负担的，并且是可获得的。

It has to be safe, it has to be simple, it has to be affordable, and it has to be available.

这些就是我们认为必须作为普遍早期教育和保育体系基础的原则。

And they're the principles that we think must underpin a universal early education and care system.

你刚才说的这四个词，感觉应该是最基本的要求。

Those four words you just said feel like they should be the bare minimum.

但根据过去一年的报告以及参议院调查所显示的情况，在很多情况下，现实并非如此。

But if anything, from the last year, the reporting the Senate inquiry has shown us, that's not the case in a lot of instances.

是的

Yes.

当然

Absolutely.

实际情况是，澳大利亚有太多家庭在为孩子选择早期教育和照护服务时，真正可选的选项却少得可怜。

And and the case is that far too men far too few families in Australia have got genuine choice when it comes to the early education and care that their children have access to.

有些家庭居住的地区根本没有任何相关服务可用。

We've got families who live in areas where there are just no services available.

有些家庭所在地区的服务提供方会拒绝接收他们的孩子，理由是孩子的特殊需求超出了该机构的能力范围。

We've got families who live in areas where the services that are available turn their children away because their needs are deemed too high for that particular service.

还有一些家庭虽然身处该体系中，但费用高得离谱，让他们几乎难以维持生计。

We've got other families who are in the system, but the cost is so prohibitive that they're barely keeping their heads above water.

因此，当我们思考这些原则时，结合我们当前的现状，可以清楚地看到：在许多情况下，家庭还无法获得安全、可负担、可及且便捷的早期教育与照护服务，我们必须朝着这个目标前进。

So, when we think about those principles, where we are right now, we are not in a position where families do have access in every instance to safe, affordable, accessible, simple early education and care, and we have to move to that place.

我认为，有必要思考一下，为什么我们今天要讨论普及型早期教育与照护这个议题。

I think it's relevant to consider why we're having this conversation about universal early education and care.

事实上，早在2020年10月，现任总理还是反对党领袖时，他在议会中表示，如果他成为总理，他最希望留下的遗产就是普及的早期儿童教育与保育。

The truth is that back in October 2020, when the now Prime Minister was the opposition leader, he stood in parliament and said that if he was to become the prime minister, the ultimate legacy he would like to leave is universal early childhood education and care.

至于为人父母，我们是一个倡导组织。

Now, for the parenthood, we're an advocacy organization.

我们代表全国八万名父母和看护者。

We represent 80,000 parents and carers around the country.

我们成立于2013年，自那时起就一直在为这一愿景奔走呼吁。

We started in 2013, and we have been campaigning for that vision since then.

因此，当我们看到这一承诺被作出，反对党领袖成为总理并执政后，我们正朝着建立一个普及的早期教育与保育体系迈进。

So for us to have that commitment made, and for then the opposition leader to become the prime minister, and in government, we are on a path towards building a universal early education and care system.

显然，我们离这一目标还很遥远，要建成这个体系还有大量工作要做，但认清我们为何需要这个体系至关重要。

It is very clear that we are not near that yet, and there is significant amounts of work that need to be done to build that system, but it's really important to recognise why we need that system.

我们需要这个体系的原因有两点。

The reason we need that system is because it's twofold.

当儿童有机会参与高质量的早期教育与保育时，他们会从中受益。

Children benefit when they have the opportunity to participate in high quality early education and care.

但其次，对于父母而言，在当前的经济环境下，如果父母能够长期不参与有偿工作，那是一种非常优越的处境。

But secondly, for parents, particularly in the current economic climate where it is a very privileged position where a parent doesn't have to be engaged in the paid workforce for an extended period of time.

大多数家庭都需要父母外出工作。

Most families require parents to be working.

这意味着，对于有幼儿的父母来说，如果附近没有家人可以填补这一空缺，他们就必须依赖某种形式的早期教育和照护服务。

What that means is, for parents of small children, if they don't have family nearby who can step in and fill that gap, they need to rely on some form of early education and care.

因此，这是一项至关重要的基础设施。

So it is really essential infrastructure.

我经常将其描述为父母在家庭照护责任与维持家庭生计所需的有偿工作之间来回奔波所必需的‘道路’和‘桥梁’。

I often describe it as the roads and the bridges that parents need in order to move between the caring responsibilities in the home and the paid work they need to participate in to provide for their family.

这与其他正在考虑的方案有何不同？

How does this differ from some of the other options that are on the table?

因为这并不是唯一一个正在审议的修订方案。

Because it's not the only revised model that's under consideration.

我认为，在过去十二个月里，我们已经进行了大量讨论和关注，这绝对是我们乐见的。

So I think that there's been a huge amount of conversation and focus really in the last twelve months, which we think is absolutely welcome.

因为正如我所说，早期教育和照料是关键的基础设施。

Because as I said, early education and care is critical infrastructure.

它并不是一种小众的奢侈品。

It's not a niche luxury.

我们知道，绝大多数家庭都需要某种形式的早期教育和照料，而目前，中心式照料是主要使用的服务形式。

We know that the vast majority of households require some form of early education and care, and at the moment, center based care is the primary service that is used.

我们知道，目前有140万儿童参与这一系统。

So we know there's 1,400,000 children who currently participate in that system.

当我们谈论家庭的选择时，选择的前提是存在多种可选项。

When we talk about what are the choices for families, choice is predicated on there being options available.

正如我所说，目前许多家庭并没有可用的选项。

And as I've said, at the moment, a lot of families don't have options available.

当我们谈论建立一个普遍的早期教育和照料体系时，并不是说它是强制性的，也绝对不是说要一刀切。

When we talk about building a universal early education and care system, it's not saying that it's compulsory, and it's certainly not saying that it's one size fits all.

澳大利亚竞争与消费者委员会（ACCC）在2024年的调查中明确指出，在澳大利亚这样多元化的国家，普遍性永远不可能等同于统一性，因为我们有不同的社区，需要不同的选择。

The ACCC, in its inquiry in 2024, was really clear on this, that in a country as diverse as Australia, universal will never be able to translate to uniform, because we have got communities that are going to need different options.

我们相信，建立一个普惠平台，为每个有需要的家庭和儿童提供安全、简便、负担得起且高质量的选择，如果没有这个基础，那么选择权就只会落在那些负担得起的人身上。

We believe that building a universal platform where there is a safe, simple, affordable, quality option for every family and child who needs it, without that foundation, then choice becomes something that is only exercised by those who can afford it.

这并不意味着我们不需要系统中的其他替代方案。

That's not to say that we don't need alternatives in the system.

在The Parenthood，我们长期以来，尤其是过去五年，一直为居住在地区、农村和偏远社区的家庭大力倡导，我们知道这些家庭需要高质量、监管得当且适合的托育选择，而目前太多这样的社区还缺乏这些资源。

At The Parenthood, we have been advocating really fiercely, particularly over the last five years, for families who live in regional, rural and remote communities, and we know that those families need high quality, well regulated, suitable options for care, and we know that far too many of those communities don't have that right now.

但如果我们没有为有需要的家庭提供这种普惠平台，那么选择权就只是空谈。

But if we don't have the sort of a universal platform that is available for families who need it, then choice is theoretical.

您正在收听ABC国家广播电台的《生活要事》。

You're listening to Life Matters here on ABC Radio National.

我是特根·泰勒，正在与The Parenthood的首席执行官乔治·登特交谈，该组织代表父母和照料者，讨论关于澳大利亚早期儿童系统质量和安全的参议院调查。

I'm Tegan Taylor chatting with Georgie Dent, who's the CEO of the Parenthood, an advocacy group representing parents and carers, talking about the senate inquiry into the quality and safety of Australia's early childhood system.

该报告将于下月底发布。

Its report is due at the end of next month.

这一报告是在大量报道的基础上发布的，尤其是去年ABC揭露了澳大利亚早期儿童教育和护理在质量方面存在的严重差距。

It comes on the back of a lot of reporting, a lot of it from the ABC last year, uncovering some real chasms in quality when it comes to early childhood education and care in Australia.

今天早上我想问你，如果你负责重新设计我们的早期儿童保育体系，你的路线图会是什么样子？

I'm asking you this morning what your road map would look like if you were charged with redesigning our early childcare system.

是的。

Yes.

简单点，直接用一段话告诉我。

Simply put it into a single text to me.

我们一起解决这个问题。

We'll fix it together.

Georgie，我注意到我收到的一些留言中出现了一个共同的主题。

And, Georgie, I'm really seeing a theme with some of the texts that I'm getting.

Rhonda问：为什么所谓的儿童保育解决方案从不包括支持父母自己照顾孩子，并获得本应支付给托儿中心的补贴？

Rhonda says, why do so called solutions to childcare never include supporting a parent to look after their own children and receive the subsidy that would otherwise be paid to a childcare center?

当然，Rhonda认为，背后的隐性议程是尽快让父母重返职场。

The hidden agenda, of course, Rhonda says, is to get the parent back into the work force as soon as possible.

来自新南威尔士的Kelly说：我认为应该考虑向父母提供经济支持，让他们能够自己照顾年幼的孩子。

Kelly in New South Wales says, I think consideration should be given to financial support for parents to look after their own young children.

我有两个双重特殊的孩子，他们上过幼儿园和普通学校，但在那之前，我辞职在家照顾他们。

I have two twice exceptional kids who went to preschool and mainstream school, but prior to that, I resigned to look after them at home.

一些额外的资金会有帮助。

Some extra money would have helped.

乔治，这在你所提议的体系中该如何体现？

Georgie, where would that fit into the system you're proposing?

在育儿方面，我们明确表示，如果我们不讨论将带薪育儿假延长至十二个月，就不可能就一个普遍的早期教育与保育体系展开有意义的对话。

So at the parenthood, we have been really explicit that we don't think we can have a sensible conversation about a universal early education and care system if we're not talking about expanding paid parental leave to twelve months.

我们知道，在孩子出生的第一年，让父母和婴儿待在一起至关重要。

We know that it is critically important to give parents and babies the opportunity to be at home in that first year.

我们知道，目前许多父母因为根本没有选择留在家里的机会，而被迫在尚未真正准备好时就返回工作岗位，我们坚信，澳大利亚现在是时候延长带薪育儿假，使我们与经合组织国家的平均带薪育儿假长度保持一致。

We know that right now, a lot of parents are forced back to work before they are genuinely ready because they simply do not have the option of staying at home, and we believe that it is absolutely time for Australia to expand our paid parental leave so that we are in line with the average length of paid parental leave that's available in OECD countries.

目前，经合组织国家的家庭平均带薪育儿假时长超过五十三周。

At the moment, the average length of paid parental leave that families in OECD countries have is over fifty three weeks.

在澳大利亚，我们对带薪育儿假从十八周延长至二十六周表示欢迎。

In Australia, we have welcomed the expansion of paid parental leave from eighteen weeks to twenty six weeks.

我们欢迎将养老金纳入其中，但至关重要的是，必须将带薪产假延长至十二个月，以给予家庭所需的空间。

We have welcomed the inclusion of superannuation on that, but it is absolutely critical that we expand paid parental leave to twelve months to give families the breathing space that they need.

我认为我们必须认识到，我们的经济和家庭结构已经发生了根本性的转变。

I think we need to recognise that there has been a fundamental structural shift in our economy and our family units.

正如我所提到的，对于许多家庭来说，让一位家长长期在家照顾孩子已经不再具有经济可行性。

As I have referenced, it is just not financially viable for very many families to have a parent staying at home for a long period of time.

我们认为，至少十二个月的充足带薪产假是家庭在孩子早期阶段所需支持的一部分；同时，我们也坚信，如果家庭有需要、有意愿，必须让他们有机会让孩子进入高质量的早期教育与保育机构，这样他们若需重返职场，也能放心地相信孩子得到了良好的照顾。

We believe that having adequate paid parental leave, at least twelve months, is one part of the picture that families need in those early years, and then we believe that it is critically important that families have the opportunity, if they need it, if they choose it, to have their child participate in a high quality early education and care setting, so that if they need to participate in the paid workforce, they can do so while having the trust and confidence that their children are being well supported.

我们面临的一个问题是，当前用于早期儿童教育与保育的托儿补贴机制，导致了如今的局面，并暴露出澳大利亚各地早期教育中心在多大程度上辜负了儿童和家庭。

One of the problems that we have is the childcare subsidy, which is the current funding mechanism for early childhood education and care, has led us to the place that we're in, and has led us to the absolutely devastating revelations about the extent to which children and families have been failed in early learning centres around Australia.

因此，托儿补贴推动了营利性托儿服务的指数级增长，但并未在需求迫切的地区促进服务供给。

So the childcare subsidy has underpinned an exponential growth in for profit provision of childcare, And the childcare subsidy has not driven supply in areas of need.

服务机构被激励在能获得更高利润的地区开设服务，而这主要取决于家长能够承担的自付费用。

Providers are incentivized to open services in areas where they can make a bigger profit, and that is largely dependent on the out of pocket fees parents are able to pay.

因此，我们面临的情况是，四分之一的澳大利亚家庭生活在所谓的‘托儿荒漠’中，那里没有可用的服务，或者三个孩子才有一个学位。

So that's why we have a situation where a quarter of Australian families live in what's described as a childcare desert, where there are no services available, or there are three children for every one position that's available.