TOYAH ON
THE DYSPRAXIC HELP 4U PODCAST
WITH BILLY STANLEY
10.10.2021

BILL: Welcome to the podcast, Toyah. How are you?

TOYAH: I'm really good. Thank you very much. It's nice to have some normality back in life

BILL: I must start by asking when did you learn that you were dyspraxic?

TOYAH: Very early. I had a very remarkable teacher when I was in infant school and it was about my second year and she realised I was very, very bright and very creative. My very first year at school when I was four and a half, we were allowed to work with colour and crayons. So when we were taught mathematics, we had different coloured bricks, which represented numbers

I (was) top of the class at that. Then with using crayons - top of the class with that. And then when we moved to the following year when I was five people very quickly realised I could not pick up the normal standard training reading and the normal standard training of numbers. They were just gobbledygook to me

So I was put on phonetic writing - the “Janet and John” books I was given in phonetics and then I could immediately read. But once I was six, none of that was available to me. It was completely taken away and treated as if I was lazy, treated as if I wasn't making an effort. I think part of the problem was is the school didn't like me having special treatment. They didn't want me being singled out to be someone special. I went from being top of the class to the next 10 years being bottom of the class until I left

BILLY: Did you have the support of your immediate family and friends?

TOYAH: They didn't even support me when I was an international megastar!

BILLY: Did you struggle to conform to social norms and the trials and tribulations of being neurodivergent and did having a personality suppressed throughout your mainstream education somehow mould you into the person you are today?

TOYAH: I think I felt very alone. But teenagers generally feel alone. School for me was tedious and it was boring. I should have been at a drama school where I would have excelled or a music school where I would have excelled. I just did not fit into the conservatism of my education. So I would say in answer to your question that I became quite insular and incredibly independent because of it because there was no one I could rely on

There was no one I could go to and say, “why can't I do this? Why don't people listen? Why don't people see me as me?” So everything I did I was told I was wrong and I was told I was being the wrong person. So no one saw me in my true natural state and my true nature. So I think it actually made me who and what I became as a star

BILLY: Dyspraxics often say that they play the fool as a means of masking our differences. Do you consider yourself to have been always the master your true persona?

TOYAH: I tell you one thing that I did do was I covered up brilliantly in social situations, where I knew what was coming because of culturally where I came from. I had a bad speech impediment and at that time I had a limp because I was born with a twisted spine and pelvic dysplasia, which is all been corrected. I knew that people were going to make a joke out of me. So I knew how to cover this up. I knew how to bluff my way. When I went to my first job interview, I just lied and I'm a great actress. So I just lied and I got the job

Interestingly, the director Derek Jarman, who I did two movies with, who used to come and see me sing - he said to me “Toyah, you’re still acting”, and he understood that I had to create these layers. I think the most frustrating thing that I found - it wasn't really until I met my husband at the age of 25-26 where he was so crystal clear about my cognitive issues. Up until that point, I just went with being highly individualistic and deliberately not fitting in. But I thought that was part of my personality rather than my inner internal neural pathway wiring

BILLY: Given that dyspraxia is a lifelong disability, has it impacted you more throughout adulthood?

TOYAH: My my dyspraxia has got worse as I've got older. When I was younger, say from when I was born until I was about nine I had no idea I had disability. No idea. I led a perfectly normal life. I was being trained to be a junior ice skater alongside John Curry, the Olympian. I had a very normal life and then once my corrective surgeries started, I realised that this was a disability that was going to be with me on a certain level all of my life

People made me aware of the limp, which I was never aware of and people made me aware of my speech impediment, which I was never aware of. I just thought I was being treated like the village idiot all the time, which is what culturally happened 55 years ago. So my dyspraxia has definitely got worse as I've got older but in lockdown I found the most incredible teacher who has a military background and he studied my movement. And by studying my movement, he was able to reverse my dyspraxia so I can now play keyboards and I can now play guitar. I've written 30 odd albums and I've never been able to play one instrument

There are ways of connecting those neural pathways and he did it through physical exercise. In 2000 I did the “Dore Programme” which is highly controversial. The government have tried to sweep it under the carpet. I did this for three months and went away and wrote two books. That's all about connecting and firing the neural pathways in the front cerebellum through movement. Through spinning, through disorientation and balance

BILLY: Without the intervention of a family friend do you believe you would have gone on to achieve the career you've had? And as such did the lack of awareness and support for your respective disabilities in adolescence hold you back in some regards later in life?

TOYAH: It's a very good question. I think if people saw and accepted and realised what was going on with the relationship between my brain development and my body growing rather than giving up on me I would have had a far more advanced artistic career. No doubt about it. But I was written off very early as purely baby making material. I never had children and I think instinctively I knew I was carrying a gene that had this disability

So it's such a good question, because when I was about 14, and this is just a story of complete luck, a man that ran BBC Pebble Mill had a boat next to my parent's boat down on the River Avon. He said to my parents "you know your daughter is incredibly talented. You've got to get her out of the school system and put her in drama school" and he nominated me into the Birmingham Old Rep Theatre School. I never looked back. I just excelled! I was put in the right environment. So up until the age of 14 I was never in the right environment

BILLY: You had an early interest in dancing. Did you encounter any difficulties such as a lack of spacial awareness?

TOYAH: I took up dance when probably about 14. I earned my own money, I paid for my own dance classes. And again, anything to do with movement will trigger the neurons. What I didn't know back then was dehydration and the neurons not quite firing goes hand in hand. I was never given water at school. I drank one glass of water a day. Now I drink five litres of water a day. The brain cannot function in a state of dehydration, neither can your heart

So I never knew this at school. We never had water in the classroom. We never had water available to us until lunchtime, and then again when we got home. So all of that is a perfect storm. When I was dancing and even still today, I think it's why I'm never still when I move my neurons - I can feel the fireing. I can feel my brain activate. You want to feel good, just move. We’re water, fat and electricity. So connect with all of that

BILLY: Dyspraxics often struggle to learn new information at a rapid pace and have weak short term memory. We do however seem to have fantastic long term memories. Has this been the case for you?

TOYAH: It's a great question because I can give you two examples. I did a play in London called “Trafford Tanzi” about a female wrestler. I‘d pick the fight sequences up on first show. The fighting instructor, a judo Olympian showed me the fight sequences for this two and a half hour play. He never had to show me them again. They were there. When you give me a script, and I have a reading technique where I'm very, very slow but it’s there

But give me a dance routine in a West End musical (Toyah in "Cabaret" in 1987, below) it takes me months because I need to connect the counting to the music score and I feel music as as a kind of heartbeat. Musicians feel music has 1234 1234. I don't feel music that way. And dancer’s choreography - they build dances through counting. It's hopeless for me. Hopeless. So I excel at some things and other things I have to find my own way in and that can take time

BILLY: Did you encounter any difficulties such as the lack of spacial awareness, poor balance and where you're also impeded by needing to wear a raised shoe?

TOYAH: The thing is most of the time I wore a raised shoe on my right leg. My right leg has now been made the same length. 10 years ago I had surgery to make my right leg the same length. So when I wasn't wearing the raised shoe, my balance was affected and also my gait. Limp is called a gait and I had an emphasised gait. But again, I'm incredibly muscular so I can cover these things up

But I think my movement is very individualistic. And it's not what I'd call feminine movement. It's strong movement. I move like a gymnast. I'm very, very strong and very supple, and that’s partly because my tendons are just too long for my joints. So I overextend but my movement is quite unique

BILLY: You've had numerous operations in the past to help with your physical disabilities, unbeknownst to your fans and peers. Would you say it was a conscious decision and what impact does all this have on your dyspraxia?

TOYAH: No, I wouldn't because I managed to disguise it. So up until about the age of 30 my life was pretty normal. I'd had joints removed in my toes to stop them growing and I'd had corrective surgery on my right foot when I was 11. But after that I had a relatively normal life other than I could never wear lovely shoes and still can't because I have a club foot. When I was 30 my right hip socket wasn't formed. It was a shallow socket and it developed a very bad abscess when I was 40 that hollowed out the thigh. There was a huge hole there

For 21 years I had to live with that and that was done through pain control. So when I say pain control, that's physiotherapy, it's not drugs. I was allowed to carry Co-Codamol (painkiller) if I needed it, but I managed not to use it. They didn't want to do the surgery on me until the prosthetics were fully developed

So when I was 51, a very wonderful incredible surgeon called Richard Villar designed a prosthetic for me. It's very, very tiny. He took the hip joint out and put in the metal plate into my hip, pelvis, and then this tiny prosthetic goes in to the hole that the cysts formed. I couldn't walk for three months. I was off my my legs for three months while bone grew around that. And I've had a normal life since

So from the age of 30 until I was 50 I was under pain control management. That was all done through extreme muscle. I tell everyone this, if you've got joint problem problems you've got to be built like Arnold Schwarzenegger, because this muscle helps that tendon function through a dysfunctional joint. Then you can support that joint and you could probably live with it for your whole lifetime. By the time Richard Villar did my right hip he said the whole area had completely disintegrated. He had no idea how I coped and I said “I've just had to do this all my life. I know how to mask”

So I found - once I had my hip replacement at 51, I'm now 63 - my dyspraxia became worse because my brain had to adjust to a different leg length so I became clumsier. And I'm now dealing with that. It has actually taken about eight years to deal with it

BILLY: Is there anything in particular that you've struggled with when it comes to masking?

TOYAH: You see it in the hands. It's a classic sign that when I'm acting and when I'm expressing my hands kind of freeze. So now I've trained my hands so you will often see me - I will not spread my fingers. I've taught myself not to do that. So my hands are always closed fingers now

BILLY: I strongly believe that through dedication and perseverance one can overcome adversity to achieve success. Was there ever a time when you felt like giving up?

TOYAH: I'm not someone who gives up because in my upbringing, even though my family felt they loved me, it was so unnutritious on my soul, my body and my heart. I was brought up to be a failure, everyone reflected back at me failure. So because of that I'm the toughest fighter you will ever meet. I just don't give up, I will fight to the death whatever the subject matter is. And that's partly my upbringing, because I was always told I was going to fail

So when I reached 30, I had to disguise the pain. That was the biggest thing, disguising the pain, so no one knew and I think there must have been times when people wondered why I was tense rather than relaxed. It's as simple as that. I was always masking pain. There are certain things and I can only explain this through a performance. I was playing “Puck” in “Midsummer Night's Dream” about 1994 (above). So I would have been about 36 and I masked the pain by working on skateboards, roller skates and a penny-farthing so I didn't have to run

So I could get my sweeping movements on stage by using the skateboard as a body board. So I would run in the wings, jump onto the skateboard onto my body and curve around on the stage and then stand and deliver my lines. That was a way of masking pain because I knew the pain built

I could do shows but by the end of the show the pain would be building to intolerable. When I did “Calamity Jane” in the West End, which was incredibly physical - the irony of that was because it was so physical I didn't experience any pain in the whole year because I was so physically tuned up and that helped. Except on one night and an actor dropped me and it did my back in. But that’s the only time I've ever had an injury

So it's been a very interesting journey and I would say to people you just don't give up. You just have to keep learning any kind of mild physical disability, which is how I say I am. Just keep working with it. You don't give up because everyone around you is is telling you to give up. You just don't

BILLY: There is a common misconception in society that dyspraxia affects intellectual ability. We generally struggle to absorb information that has no bearing on our intelligence overall

TOYAH: I'm a complete sponge. I'm ahead of everyone in the room, which I think is what confuses people so much. I'm very, very small. I have a slight lisp. I have a slight gait. My malatropisms are frequent in every sentence I say, but I'm ahead of everyone. So I think it's this super intelligence. It has absolutely nothing to do with the condition in your body. You're still intelligent. I read every newspaper every morning within an hour and maintain that information. But there are certain areas that I can't maintain information on

I would never make a politician because it just makes no sense to me what politicians do. If you're not helping someone earn a living, have food on the table and be healthy you're not doing your job and as far as I can see everything politicians do is illogical and just help CEOs get big fees in big companies

So when I see something illogical and there's so much in the world that isn't logical I can't work that out. It will never make sense to me. But on other levels I have super intelligence and I don't mind patting myself on the back with that. I'm ahead of everyone in the room

BILLY: How are you when it comes to reading between the lines both in your personal and professional life?

TOYAH: I have to study myself all the time in mirrors. Going up for a part I have to change the way I move. I have to deal with the hands. I'm incredible at reading people. You get people that do face recognition for the police. I can read someone literally in five seconds because I’ve studied myself so much. So I'm a very good reader of personality traits

BILLY: After many years as an actor and a musician touring, can you withstand the constant changes of the lineups and surroundings? Are longtime colleagues supportive of your neurodiversity and the way that you work?

TOYAH: It's a good question because in the following week I'm working with three different groups. I've always kind of ended up with different bands. The Toyah band, what's fabulous about the band is we've been together for 18 years. They know how I need to learn something and they know when I can't learn something. They know the route in and we have kind of eye signals and hand signals on stage when I've lost the count. I anchor by the downbeat. Now, most musicians don't need a downbeat, they can work around that downbeat (makes a tsk tsk tsk noise) I need the boom, boom, boom, that's how I recognise music

So the Toyah band make that very easy for me. As a solo artist - it's important to me to be a solo artist because it's important to me to establish who and what I feel I am rather than what other people feel who and what I am. I'm not a person that lives by others opinions. And I think that makes some people … I'm difficult to be with for some people because I won't let people tread on me. It's all my upbringing, it's all survival. It's all how dare you tell me that my precious time isn't how I perceive it

BILLY: Is it fair to say you're still fighting an uphill battle with acceptance and credibility as a neurodivergent woman in the entertainment industry?

TOYAH: I’m fighting the war and I'm a woman and you've got that as well - being a woman in the music industry. There's quite a war going on all the time

BILLY: I discovered via your blog on toyahwillcox.com that you are also dyslexic. As a fellow dyslexic myself, I am in awe of the fact that you've penned two books and have co-written nearly 30 albums throughout your impressive career to date. Have you ever felt like you've been at a disadvantage in comparison to your peers?

TOYAH: There are some authors I will never be able to read because they have a way of thinking that I believe is brought to them through their education and it's quite an elite education. There are some authors like Stephen King - I can pick a book up and read it in two hours. But there's other authors I have to go through with a dictionary. I have to go through each paragraph three times

There is an elitism in writing and because I read the newspapers - the simpler writing techniques like The Sun and The Mail - I can read those in five minutes. If I'm going to go to The Independent and The Guardian and The Observer I'm like oh, I don't understand that. So what do they mean? Why have they said that? Three sentences later, they're saying that … I just have to go over and over and over it

BILLY: Do you find putting pen to paper easy and does it play a big part in your day to day life?

TOYAH: Both books are a stream of consciousness. I don't know about you, but I think about my life like a diary. So say that's a diary (rustles some paper) Every single note of every single day is in that order in my brain right through virtually to my first memories. I could tell you what I was doing a year ago and what I was wearing, and that really freaks people out

So when I'm in a situation and I was in the situation two days ago rehearsing the tour band for “Posh Pop”, which is the new album. They wanted to change an arrangement. So that in my head is like taking the ABC and just throwing it at the wall. It's literally like that. I can't hold it down. I can't sequence and I'm saying sorry, I'm having a brainstorm here

I'm going to have to stop everything, write it down in its order, learn it, see it, photograph it in my brain to get the line still. So sometimes when I look at print, the print becomes a black block. Impenetrable. You're just looking at a blank block or it's like confetti firing off and I can't control the images

So reading books … I know a good writer Alice Sebold, “Lovely Bones”. That is an intellectual book. I read it in two hours, because she wrote it as a stream of consciousness. So with both of my books “Living Out Loud” and “Diary Of A Facelift” - they’re streams of consciousness. But because my consciousness is so ordered, when I write something it has that order in it

BILLY: Your incredible acting career has seen you star in a cult classic film “Quadrophenia” and opposite Laurence Olivier in “The Ebony Tower”. You've also tread the boards in big West End shows and have appeared in TV shows, both as an actor and presenter. What impression did the people you've worked with leave on you?

TOYAH: I’d say in “Quadrophenia” we were soul brothers and sisters, we're all the same. There was one standout, absolutely brilliant intellectual and that was Sting. He could do anything with such eloquence and brilliance, but the rest of us we were of similar mental ability and function

Laurence Olivier was exceptional and I think part of this exceptionality was his generation. Seen two wars, have had to survive, gone without food, not knowing waking up every day and I think not knowing made exceptional human beings. I'm not saying it's good but Katharine Hepburn, Lord Olivier, Sir John Mills, Diana Dors, exceptional human beings. They shone

BILLY: What did it feel like working with Laurence Olivier?

TOYAH: I came out of “Trafford Tanzi”, which was a massive critical success so I was pretty confident when I worked with Laurence Olivier (below, with Toyah in "The Ebony Tower") What I was aware of that he was in the latter part of his life and he wasn't well, but I absorbed him like a sponge because he had done so much and he had fought so much for what he believed in. The National Theatre was not an easy thing for him to do and then to be put into a Hollywood system when really he was passionately in love with the stage was not an easy journey for him

The Hollywood system messed up his wife, Vivian Leigh, and I witnessed this with Katharine Hepburn that the Hollywood system of the golden era of Hollywood was a cruel system. So I was looking at another survivor and recognised that and just was absolutely in awe of all of them. Huge respect

BILLY: You've got the same fight and spirit that those stars of yesteryear had. Does it hold you in good stead?

TOYAH: I've got my limitations. My physicality gives me limitations as an actress. I was looking at people who were seen as chameleon who could be anything. So I didn't actually hold myself in the same regard as them. But I am still a fighter

BILLY: In 1984, you had the honour of being invited to make a speech at the Women of the Year in the presence of Diana, Princess of Wales (above with Toyah) Your speech expressed views on how being disabled incites creativity. What was the driving force behind your speech?

TOYAH: It was a huge honour, Woman Of The Year celebrations. It's so motivationally important and you think well, why in a time today but it's incredibly important. To be invited to do that was just amazing. I wanted to just say that because I've been perceived educationally as a no hoper - and even my husband Robert Fripp, one of the world's greatest guitarists - then two weeks ago, (he) said to me and my guitar teacher "Toyah is unteachable". Even he thinks I'm unteachable

I felt it was an opportunity to stand up and talk about the people I attract in my life, who seem definitely to have some form of disability. And the question is, is it disability or is it a different perception and experience? All are viable

So in this speech I talked about two deaf male friends in an audience at Shaftesbury Avenue Theatre. I think 1982 or 83 where I was giving a concert and they were sign languaging the lyrics to each other. I realised they couldn't actually hear the music, but they were experiencing it. So I told this story

In 1987 that's was revolutionary, we were just beginning within music theory to understand that people who are locked into their bodies but can't express themselves were still experiencing life and experiencing emotions. So this was all revolutionary and has come a long, long way since then

I gave this speech and I just wanted to say that we need to see disability as these people have rights of access to everything but their disability doesn't stop them being phenomenal. So how do we use the word disability? I think we've come a long, long way in those last decades to making everything accessible and possible for everyone and that if we're educated at school, to know that we are all utterly physically unique, then we develop languages and connections no matter who and what we're connecting with

It crosses boundaries, we need to cross boundaries and I think that's what that speech was about. If you read it today, I was probably using politically incorrect language but all of that is being ironed out and I'm certainly learning every day about the new language and the new acceptance and what can be said and what shouldn't be said (Watch the speech HERE)

BILLY: As a 31 year old with significant hearing difficulties I applaud you for taking a stand and making the speech that resonated experiences you'd had at the time. Every generation must play its part in spinning the wheel of change for the greater good with the best of intentions

TOYAH: Every generation must have the right to change the world for good. Every generation must do that. Our present young generation who’ve had 15 months of COVID now deserve the mantle, they deserve the right to change the world for good and it's quite an extraordinary time to be alive. I think it’ll only change if people are taught about this

So when I work with my band and if a firestorm starts in my head, I tell them. I say "could you just stop talking while I sort my head out?” Because sometimes you're having a firestorm and you just need to put everything back in place and conversation can be exhausting. I just educate them about what I need

Three years ago, I was in a play (as Queen Elizabeth I in "Jubilee", 2018, above) with a profoundly deaf actress. Sophie Stone, breathtaking actress and she said to us if we talk away from her she's not involved in the conversation. We had to learn to socially interact in that way to make sure we were always facing Sophie. But another thing she said that after eight hours of rehearsal, of reading sign language and doing sign language and reading lips, she was exhausted and she needed to be alone

So it's all about interaction and learning and acceptance on a social and a work level. If we're not given that time, or we're not given that journey, the integration and the acceptance and the equality of it hasn't got a chance. So we need to learn this from the dyspraxics and the dyslexics and the hidden disabilities as well

BILLY: What coping strategies do you use for dyspraxia and dyslexia? Awareness of dyspraxia pales in comparison to other hidden disabilities. What do you think is the cause for this?

TOYAH: It's always been a big problem for everyone in my life that I am so capable of sitting in silence for weeks on end. I've actually gone months, well, let's say a month without even uttering a word. Silence and solitude for me is as informative creatively as it is for people in a nightclub. I think part of that is I have exceptional hearing. It's a massive problem. I am three doors away from the street and I can hear people talking on the pavement outside

So everyone that comes into this house who knows me is aware that my hearing is exceptional. Because of that I do get very, very tired. There's a lot of information coming in all the time. Socially I say to people, let's get together, let's have a cocktail hour. If it goes to two hours, great. But after that I'm not good company. I get very, very tired by overstimulation of being social. And it's not criticism. It is just how I’m made

BILLY: During the pandemic, you and your husband Robert kept the fans entertained while uploading many short, humorous videos online, going viral and racking up billions of hits. You've evidently helped people throughout the past year to keep a smile on their faces, but how have you coped mentally as a neurodiversive person?

TOYAH: By doing exactly what you just said. I can't really do nothing. The first three weeks of lockdown I was in silence. I was meditating. I was actually praying a lot. Praying for my friends. We had a lot of people pass from cancer in that first three weeks. We lost two musicians. That first three weeks were very, very hard and then after that I realised that we were all in the same boat

I wanted my husband to move and I started to teach them how to dance, which he hated. And then we started to do these crazy little films which he absolutely loathed in the beginning. But the messages coming back with “thank you, you saved my life. I'm alone in a single room apartment and I don't know what to do.” So all these messages were coming from around the world

Slowly we realised that we'd hit on something that neither of us had ever touched upon before - that is our music was actually really affecting people's lives in a good way. So for me, the lockdown has been the busiest part of my life creating Toyah YouTube. But it's also kept me sane because I'm a performer and a performer needs an audience and it's as simple as that

BILLY: Did it feel like you were personally letting fans down when having to cancel gigs despite it being out of your control? Did the move on to YouTube reassure your fans that all is well and normality will resume eventually?

TOYAH: Not only that. People who bought tickets didn't know when they were going to see you and people can't give up that money easily in a lockdown if they're not being furloughed, but they're out of work. You want to protect your audience, you want your audience to know that you see them, hear them and honour them. I had three tours cancelled and I wanted people to know that they hadn't lost that ticket money. So the whole of the connection through internet became vital and very, very precious

BILLY: I am very much looking forward to seeing you live on tour in March 2022

TOYAH: Oh, that's fantastic! Good! We’ll know what we're doing by March. Completely new lineup, completely new sound

BILLY: The “Posh Pop” tour gets underway in autumn of 2021. performing songs from the new album, hits and classics with electro acoustic band. Thank you for appearing on the The Dyspraxic Help 4U Podcast

TOYAH: Thank you and thank you for understanding the process

Listen to the podcast HERE