Charity Questions podcast 3×02: Red in the Spectrum speaks
Red in the Spectrum’s Janine Booth was a guest on the Charity Questions podcast run by the Directory of Social Change (DSC).
This is the video of the podcast episode. Below it is an edited transcript.
Charity Questions: Welcome back to another episode of DSC’s ‘Charity Questions’ podcast. Today we’ve got Janine Booth from Red in the Spectrum joining us. I first met Janine last year at DSC’s staff day and I had to get her on the podcast, because we were hugely inspired about her mission, which is to talk to many organisations of different sizes, including trade unions, about neurodiversity and in particular neurodiversity in the workplace.
Janine, so welcome to the Charity Questions podcast. Thank you for joining us.
Thank you for inviting me!
Charity Questions: Janine, tell our listeners, what is Red in the Spectrum, your organisation?
Red in the Spectrum is about empowering organisations to harness neurodiversity. All of that needs unpicking and explaining, doesn’t it?
First of all, what’s neurodiversity? Neurodiversity is short for neurological diversity. It is a term that was coined in 1998 by Judy Singer, an Australian autistic activist. She based it on the idea of biodiversity. She said: Look, it’s the late 20th century, human society’s finally getting to grips with the fact that we share the planet with lots of other species, that they interact with each other, that that’s a good thing and that it’s about time we stopped stomping around the planet trying to eliminate it and started appreciating it and protecting it instead. And she said: Let’s apply that same principle to the naturally-occurring variation in human brain structure and accept that human society consists of individuals whose brains are structured differently from each other, that having individuals who are different from each other is a good thing, and instead of stomping around the planet trying to eliminate it, it’s time to value it and protect it and appreciate it.
So she coined the term ‘neurodiversity’. Since then, it has taken off and spread around the world like the proverbial Australian wildfire, because it struck a chord with so many of us who were say, autistic or ADHD or dyslexic, and are sick of being told that we’re broken, that there’s something wrong with us, when what we want to say is that we just think differently from how you do and that’s a good thing.
If, say, you’ve got a team of people working on something and they all come at it from a slightly different angle, you’re going to get much better results.
Yet, we live in a society that makes it very difficult for people who are not neurotypical, whose brain isn’t structured in the most common or predominant way. ‘Neurotypical’ just means the brain structure that we think is the most common. Apologies to any neurotypicals listening to this Charity Questions podcast that no-one has yet come up with a more descriptive or interesting name for your brain type. Until they do, unfortunately you’re just common.
Charity Questions: We’re not that cool, are we? I like that a lot, I’m already inspired. This is why I knew you’d be a great guest, Janine, and I’m sure you’ve got some listeners ears’ pricking up. I can see where your inspiration comes from. This has led to you creating Red in the Spectrum. Any personal experiences that led to this?
You’re going to get a bit of my life story now, but it is relevant! I have three sons who are, at the time we’re recording this, 25, 22 and 20.
My middle lad, Joe, just before he was five, was diagnosed as being autistic and me and his dad – my ex – we had no idea what that meant. We went on this learning journey, learning about autism, and the more we learned, the more little lights started going off in my own head, until in 2012 at the age of 45, I was – I like to say identified rather than diagnosed – I was identified as being autistic, and for the first time my life made sense. It explained why I’d always felt a bit different. It’s like having being shortsighted your whole life and finally getting a pair of glasses. You finally find out who you are.
At that point, I was on the national executive of RMT (the Rail, Maritime and Transport Workers’ Union) and I started thinking that more and more people are talking about autism these days, more and more people are talking about neurodiversity, but they’re mostly talking about it as a children’s issue or as a medical issue or as a school issue, they’re not really talking about it as an issue for grown-ups – I don’t know what they think neurodivergent kids grow into – they’re not really talking about it in terms of workplaces or campaigning or trade unions.
So, I started developing and delivering training for trade unionists, first of all about autism and then about neurodiversity more broadly.
At the time, I was as a station supervisor on London Underground. I did that for 26 years. Then, the year before last, I realised that I couldn’t really do that job any more. So I left that job and started doing the training stuff full-time. It’s expanded beyond trade unions, and I’m working now with charities, with local authorities, even the occasional private company.
We don’t just do training. We can provide speakers. One thing we’re starting this year is the neurodiversity audit. We’ll audit your organisation about how neuro-inclusive it is. That will mean looking at your publications to see how dyslexia-friendly they are, looking your events to see what the sensory environment is like, and all sorts of aspects including stuff you might never even have thought of! We can do an audit in as much depth as the particular organisation wants to. We then give you a plan about how to become more neuro-inclusive, which is going to make you stronger in the long run because the more people you involve, the more you’re going to be able to achieve.
Charity Questions: And if we can bring people closer to the work that they enjoy and the work that they’re able to do in the way that suits them, we’re going to have more purpose, we’re going to have less people leaving, we’re going to have more people engaged. There may be an element of cost bringing in Red in the Spectrum, but once you’ve addressed this stuff, most of this stuff is free and just about dealing with people.
And we are also very cheap compared with everyone else!
Charity Questions: Of course, and I’m sure that’s pricking the ears up of the charity people listening to this, so we’ll give you the jumping off board to go and find out more about Janine at the end of this Charity Questions podcast.
So, you’re talking about how it’s evolving now since its inception. Did you say that you’ve only been doing this a couple of years?
I’ve been doing the training since 2012, but branded it as Red in the Spectrum when I left London Underground a year and a half ago. We’ve now got other people involved, for example in doing some of the research.
Charity Questions: It looks really impressive. I’ve got to ask you what stations did you work at? I’m in Camden myself.
The first and last station I worked at was Oxford Circus. But over the years in between, dozens of different stations. I spent quite a while working at Bank, which is not a station, it’s an underground city! But I worked at some quieter station too.
Charity Questions: I would love to hear a success story, Janine, or a moment that kind of made you proud of where you’ve come with Red in the Spectrum.
I run the neurodiversity training program for the Fire Brigades Union. We do three-day residential courses for their reps and activists. At the end of one of them, one of the reps on the course came up to me and said thank you. He said, I’m dyslexic and I’ve spent my whole life thinking I’m thick and this week I found out that I’m not. That was amazing.
And then at another FBU event, a rep came to me and said that she had saved three firefighters’ jobs using the knowledge she’d learned on the course.
Those are those are a couple of things I’m pretty proud of.
Charity Questions: Lots of people come on here and give me chills from the things they say, and that’s definitely one of those. Both of those are so powerful, aren’t they? You’ve given someone an identity maybe similar to what someone did for you, Janine, all those years ago. I imagine that it’s quite a powerful experience. And this is just the like the tip of the iceberg in terms of where we’re going to go with these conversations.
Charity Questions: You have a lot of organisations that bring you in, and they’re really engaged. But I imagine there’s probably still a bit of misunderstanding from people as well …
The biggest shift I have try to work on with people is that pretty much every time I run a course or talk to an organisation, people want to know what reasonable adjustments they can make for individuals, and I want to challenge that. I want you to think of reasonable adjustments for individuals as Plan B. Plan A is an accessible job, an accessible organisation. We want to get to the point with your organisation where nobody needs a reasonable adjustment because it’s accessible.
If you worked in an office and the only way in was three steps up to the front door, and say you were the management or say you were a union rep who went to the management and you said, ‘We really need to put a ramp in’, and the boss said ‘No, we’ll do that as a reasonable adjustment if and when a wheelchair user works here.’ You wouldn’t accept that, would you? We need that to be the same for everything.
For example, there are some ways of laying out printed materials that are more dyslexia-friendly than others. If Charity Questions listeners want to find out what they are in detail then Google (other search engines are available) ‘British Dyslexia Association style guide’. What we don’t want is organisations to say, ‘OK, when one of our people tells us they’re dyslexic then we’ll produce a version in that layout’. Just produce everything in that layout! Then you won’t have to go the trouble of doing a separate one for someone, you won’t be highlighting them, making them look different, and you won’t be relying on them knowing that they’re dyslexic. Not all neurodivergent people know they neurodivergent. I didn’t know for 45 years. I wouldn’t have asked for reasonable adjustments because I wouldn’t have known where to start.
Charity Questions: You said something that really stayed with me, Janine, about constellations …
Most people know now that autism and other neurodivergent conditions are spectrums. They present differently in different people. The spectrum of course is a range of colours. We are Red in the Spectrum because the red represents our passion and it represents leftiness. There are neurodiversity organisations out there that will teach you about how to – this is a bit rude – but how to exploit neurodivergent people at work more effectively.
There’s this notion called the ‘competitive advantage’ which is about how it makes your company more competitive to hire autistic people. That’s not us. We don’t think that a neurodivergent person’s work is their worth. We don’t think people’s rights are dependent on their productivity. So that’s where the Red in the Spectrum bit comes from.
But you asked me about the spectrum … Some people say ‘He’s on the Spectrum’ as if they can’t possibly say ‘He’s autistic.’ It’s kind of a euphemism. It’s almost like it’s embarrassing. The important thing about the spectrum is that it’s not a straight line from mild to severe. You’ll hear people use phrases like ‘mildly autistic’ and ‘severely autistic’ and that’s not helpful, because it’s much more multi-dimensional than that. There was an autistic activist who suggested ‘constellation’ rather than ‘spectrum’ because it’s much more multi-dimensional – and, of course, it is full of stars!
That’s also linked to people using phrases like ‘high-functioning’ and ‘low-functioning’. That’s not very helpful. Partly, you occasionally hear parents say ‘My son’s autistic but he’s high-functioning’ and it’s almost like saying ‘My son’s autistic but he’s not one of the stupid ones.’ A whole person is pretty much never either high-functioning or low-functioning, because people – autistic people in particular – tend to have what we call a spiky functional profile, simultaneously high-functioning at some things and low-functioning at other things. Or high-functioning at something on one day and not on another day. To use a particularly clichéd autistic stereotype, say you’re brilliant at maths, to the extent that you’re professor at a university, but you can’t get out of bed and get to work on time to deliver your lectures without someone to help you do it. Are you high-functioning or low-functioning? The whole person is neither.
If we call people low-functioning then we overlook their strengths and abilities, and if we call them high-functioning then we overlook their needs. It’s best to think of people in terms of their individual profiles and needs.
Charity Questions: We do this a lot, don’t we? We try to profile people. People would call me an extrovert, I’m sure, but if you took me to a painting class or a drumming class, I’d be hiding in the corner trying not to show my painting and I wouldn’t be an extrovert. It’s not my skill set. So we have to think about it from a broader perspective. I think language is crucial in many places. Are there any other misconceptions that you tackle head on as Red in the Spectrum?
There are loads of stereotypes, but let me just give an example. Most people think that people with Tourette’s can’t help swearing all the time. But swearing tics – the proper name for that by the way is ‘coprolalia’ – only affects about 10 to 15% of people with Tourette’s. Other people with Tourette’s have different kinds of tics. They might be motor tics or vocal tics, which might be swearing, but it might be grunting or saying a particular word over and over again.
Can I go off on a tangent and tell the story of Madame Dampierre? She was one of the first recorded cases of what later became known as Tourette syndrome. She was in Paris 200 years ago. France led the way in modern neurology, because it was a developed country but also because they had lots of heads to study because of the revolution chopping them off people!
Madame Dampierre was a French aristocrat and she had what we’d coprolalia. Her medical records for the whole of the 19th century, for her whole lifespan, survive and it’s really interesting reading them. They’re all at different times of her life and they’re written by different doctors, but they all make the same observation – that her swearing tics, her vulgar outbursts, are ‘in marked contrast with the lady’s social standing’.
You’ve got to imagine this French aristocrat sitting in her boudoir effing and jeffing and the doctors are saying, ‘Ladies don’t behave like that. There must be something wrong with her.’ Meanwhile, half a mile down the road at the local market, there’s a shedload of working-class and peasant women effing and jeffing their heads off and no one’s diagnosing them with anything because that’s just how the great unwashed behave.
I love the story of Madam Dampierre because I think it illustrates beautifully that since human society started investigating how our brains work, about 200 years ago, it has always been a class issue. The various neurotypes that I’ve mentioned – autism, dyspraxia, dyscalculia, etc – there’s no physical test for any of them. No blood test or brain scan shows you whether you’ve got one of these things. They’re all diagnosed on the basis of observed behaviours, and the way our society judges people’s behaviours doesn’t judge everyone by the same yardsticks. It’s subjective. It has different yardsticks based on different demographics, the main one of which is class.
There are others as well, for instance gender. Madame Dampierre’s doctors thought the cure for her swearing tics would be to get married. They were sadly disappointed. I like to think she swore more when she got married, but I don’t have any evidence of that.
Charity Questions: There’s a lot of history there in terms of how far we’ve come and you’re right, it’s so class- and gender-based. I really like the message about let’s not wait to do an appropriate change for someone, let’s get ahead of that.
I think people tend to think ‘Let’s learn about neurodiversity so that when someone here tells us they’re ADHD or dyscalculic or whatever, then we know what adjustments to make for them.’ My main advice would be: No, don’t wait for that. Think now how you can make your workplace more neuro-inclusive. Start using dyslexia-friendy print layout now, get rid of the fluorescent lights in your office and replace them with dimmable, full-spectrum lighting: it’s less grating to people with sensory sensitivities.
All these measures make your workplace or your organisation’s premises or whatever better for everyone or at least neutral. There’s nothing I found that makes your organisation more neuro-inclusive that makes it more unpleasant for neurotypical people. Fluorescent lighting is really bad for us generally, and some people have a sensitivity that’s higher than others’.
Charity Questions: You’re right. We make these changes and potentially others are also then recognising the benefit – like with British Dyslexia Association style guide. Are there any other things like that to shout out while you we’re here?
Quite a lot of the charity websites are good for things like that. But if you’re looking for useful websites, then don’t just stick with the national charity ones. Look at the blogs written by neurodivergent people. The charity ones, I tend to think, are good for information, but they’re not speaking on behalf of neurodivergent people, they’re speaking about neurodivergent people.
And check out the Red in the Spectrum website, because we’ve got loads on it. It’s not just adverts for our course: there’s all sorts of blog articles.
Charity Questions: I think that’s how we found you, to be fair.
We’ve got a very good web master. Everyone who’s involved in Red in the Spectrum is neurodivergent. Our web chap is autistic, is absolutely brilliant, hyperfocused on Search Engine Optimisation, meaning that people like you find me!
Charity Questions: You mentioned the accreditation system – that sounds very sensible, giving people that opportunity to work a bit deeper with organisations, see a bit about their processes potentially maybe. That sounds really powerful. Is that good to go now? Can people can come and do that straight away?
Yes. And again, it can – depending on your resources – have a quick overview or you can have a more in-depth one. It’s geared to your organisation’s capacities.
Charity Questions: Any more visions for the future in terms of where you want Red in the Spectrum to be?
Honestly, I don’t let myself dream of it being this massive organisation! It’s an organisation, but I see it as being part of a movement.
It’s absolutely not about doing things for you, it’s about empowering you to make the changes yourselves.
Charity Questions: The movement is bigger than Red in the Spectrum and you’re a small part of it, but if we can keep the movement going in the right direction with a snowball effect, maybe get some similar organisations doing the same work …
The important thing is for neurodivergent people to be in the leadership of this work. There is a long-held important slogan of the disabled people’s movement: nothing about us without us.
That’s important for all marginalised groups that are fighting against discrimination. It’s particularly important for disabled people because we are so used to being talked about and talked over. There was the scenario called ‘Does he take sugar in his tea?’ Two people go into a café, one of them’s a wheelchair user, one of them isn’t. They order cups of tea and the person delivering the tea says to the person who’s not the wheelchair user, ‘Does he take sugar?’ Why didn’t you ask him yourself?! People get talked over a lot, in the sense that they think because if you’re different in one way, then you’re incapable of anything, and in particular you’re incapable of talking for yourself.
The leading autism charity in America is called Autism Speaks. Why it calls itself Autism Speaks I do not know because it doesn’t allow autistic people to speak. It’s an extremely cure-driven, pathologising organisation. Autistic activists picket its events.
Charity Questions: It’s funny, isn’t it, when these kind of charities end up with this figurehead of actually the opposite of what their name dictates? And they probably always had this kind of approach, that’s been proven to be misdirected and fundamentally wrong. But they got the funding – that matters, unfortunately, for those sorts of projects. And this is why your work is so important.
I’m sure lots of Charity Questions listeners resonate with what you’re saying and probably come with their own stories about how they’ve experienced it within their workplaces. ‘Nothing about us without us’ is very true for all charities and all kinds of fundraising. I also love that one of the habits of highly effective people is to understand before you can be understood.
We do a thing called NeurodiVERSE, emphasis on the VERSE, which is poetry. If your charity is having an event and you want some entertainment, and you think, ‘I know, let’s get some neurodivergent poets’, then give us a call, we can sort it. I have a side hustle as a poet and I know loads of neurodivergent poets.
Charity Questions: This is so good. We’ve got our accreditations, we’ve got our poetry, we’ve got our training, and obviously we’ve got Janine as a speaker as well, which I can’t recommend enough.
My son Joe, who I mentioned before, he’s 23 tomorrow. You’ll see on the Red in the Spectrum website and on my personal YouTube some interviews I’ve done with him. He speaks particularly about his experience as an autistic young man. There’s a bit about sports and leisure, what it’s like for autistic people, what barriers you face in sports and leisure. There’s one about his time in education.
If you don’t want me (whyever not?), there’s a range of speakers that we can arrange for you.
Charity Questions: Nice. So we did this as part of our staff day. We always try to have a learning session. Sometimes we’ve had people teach us sign language, and of course you came in for us, Janine, last year and you left a lasting impression.
I think it’s always worth, if you are having an event like that, to bring in a speaker like Janine or Joe, or anyone else as part of Red in the Spectrum, to just give that little bit of thought provoking. Also in terms of how we deal with our beneficiaries, nothing about them without them – maybe this will help us to be in the shoes of another human being a little bit more effectively. This can only empower our missions.
Give us your website and socials.
www.redinthespectrum.co.uk. There is a lot of information there and there’s also a contact form on there.
You can email directly to [email protected]
And my personal YouTube channel is www.youtube.com/JanineBooth. There’s a playlist on there about autism and neurodiversity, but there’s also lots of poetry and ranty speeches and some little Doodly videos.
Charity Questions: I’ll give you a subscribe. Thank you so much, Janine. Honestly, it really left a lasting impression on many of us at DSC and I’ll definitely be taking your stories and your learnings from you as I go forward in my career, and absolutely shouting about Red in the Spectrum, because I think it’s a powerful message you bring. The movement is taking over, isn’t it, so maybe one day, Janine, you get to sit back and just watch the movement take over without you, but for now, your’re fighting the good fight. DSC are here to help if we can.
Thank you for listening to another episode of the Charity Questions podcast, brought to you by the Directory of Social Change. DSC provides training courses, publications, online funding databases, research, conferences and lots of free resources just like this to the charity sector. If you want to get more involved with this podcast, follow us on social media where we announce the guests we have upcoming and you can contribute your own questions for me to ask on the Charity Questions podcast.
Thanks again for listening.
Thank you from Red in the Spectrum to the Charity Questions podcast for inviting us.
As well as appearing on the Charity Questions podcast, and speaking at DSC’s staff day, Janine also spoke at DSC’s recent management conference and wrote a blog post for DSC in the run-up to it.
