This is the second interview of my blog series 'Hidden Voices.'
Hidden Voices shines a spotlight on talented local people based in and around Plymouth. These people balance successful careers with a disability or life long health conditions.
Last year when I spoke out about my experience of Tourettes it liberated me. Speaking loud and proud about my condition has given me opportunities to connect to a diverse community of people and it has given me a whole new perspective to the work I create. There are some real tough moments, and moments where I want it to all go away, but there are also beautiful connections and wonderful people I have met along the road.
I came out of hiding, (though I do hibernate from time to time) and I wanted to offer others the platform to do so too. I have interviewed 5 people I know, who all have a hidden disability. Hidden sometimes by choice and sometimes hidden because of the nature of the condition. I hope you enjoy reading these honest and eye-opening posts and that you feel inspired to come out of hiding and share your true self!
I met Carina last year at a Tourette Syndrome meetup group. We both have Tourette Syndrome, and I have discovered through reading this blog that we have lots in common!
Meeting Carina has been an absolute blessing, and she is someone who has helped me greatly in my TS journey. She is super talented and cracks me up with her epic Instagram stories! I really wanted to interview Carina as I am always inspired by her approach to life- she navigates her day to day life in a way that suits her and she doesn't let her label define who she is!
Over to Carina...
What's your name? Carina Louise Miles
What do you do for job?
I am a Youth and Community Worker and currently work with children and young people in care and care leavers for a voluntary sector organisation. I also work creatively as a freelance musician/arts practitioner working with young people to introduce and engage them in the arts.
What do you do for the pure love of it?
This is a hard one as I do a lot of things I love so I will give you all of them! I love to play squash and have played this from a very young age, I have played competitively and have always enjoyed the sport so much. I LOVE the theatre and would never be without it, I enjoy watching shows (particularly musicals) but I also love to perform and (apparently) am most famously known for being the sugar bowl in the Beauty and the Beast theatre production (perhaps not my proudest moment!)
I love my beautiful family - Lisa my gorgeous partner and my dogs, Ruby the sausage dog and Wilma the Cockapoo. They are my absolute world and we do the greatest things together, but most of all I like to go out with them on our adventures and laugh together. I really enjoy making people laugh, being silly and taking risks! Humour is a big part of my life and to make someone smile or laugh makes my little heart beat with joy
SING! As my partner will tell you, I sing a lot!
Do you have a disability that you would consider as a hidden?
Would you be up for sharing a bit about your experience of this?
I have Tourettes Syndrome and Dyspraxia. These are both very important together as they affect my life a great deal. The Tourettes for me mainly consists of tics that include; grimacing my face, twitching and blinking my eyes, tensing my muscles, croaking my throat, humming, clearing my throat and shouting/saying/screaming all kinds of random things!
I have cluster tics otherwise known as “tic attacks” which basically mean a mish mash of all of my tics at once. I can’t communicate when this is happening, it can be very painful and last from anything between 5 minutes - 5 hours long. I consider this disability hidden because I very regularly suppress all of my tics, so many people don’t actually see them or know I have Tourettes. My tics are very situational and for example when I am at work I often don’t tic very much at all because I am distracted and things don’t trigger me very much. I tic mostly when I am at home and out in town etc etc.. too many examples to give!
The dyspraxia really impacts on my ability to navigate and I even have to use a sat nav to get home from work! So when I say to people I have difficulty with directions they normally take it to be a slight issue that would be “the norm”, and still try to give me directions when I just cannot follow them. I get lost in buildings, basically everywhere! It makes me very clumsy, I have a lack of awareness of spatial awareness and have trouble with fine motor skills.
Things like sewing are a no go area! I have trouble planning and organising which means I am very organised but it causes a lot of stress. I spend ages doing everything which is about a lack of awareness of time too. Memory is also a big issue which links both with the Tourettes and the dyspraxia.
If you could squeeze the world up into ball of of Plasticine and remold it, what would it look like? What would be the biggest change you would make in our society?
It would look like a shape with lots of bumps, swirls, ridges, holes, flat surfaces, twist and turns! Because it would be diverse, vibrant and cater to everyone’s needs and differences.
Do you feel hidden because you hide intentionally or does your disability just go unnoticed?
I am ashamed and embarrassed about my Tourettes and society can be very cruel towards individuals with differences, so as hard as it is to hide a big part of myself, it’s also easier sometimes. Most people who know me are aware I have Tourettes but don’t actually know how bad this can be for me like the tic attacks and having to be admitted to hospital.
Often when I am talking to people about my Tourettes I minimise how it impacts on me, therefore “hiding” parts of me and my condition. I regularly go to hospital to have Botox treatments in my face, neck and back muscles to try and lessen the tics but for me this isn’t about hiding anything it’s to treat how difficult the tics can be in my life. It can be incredibly distracting, painful and very annoying!
Granted, my tics can be very funny and when I was having a tic fit the other day my partner was laughing a lot as I was saying and doing the weirdest things. Like.. saying “how many eyelashes do you think you have and shall we go to the shops with them”. I have also had a tic for a while now where I just say/shout “Mum!”. My girlfriend obviously loves that one when I say it in public seen as I am 15 years younger than her haha! I am most comfortable ticing in front of my girlfriend and my beautiful Tourettes family friends <3
Sometimes I can’t hide it very well or I will go and hide in the bathroom or something to release them. This can cause confusion amongst others and often people think people with Tourettes “fake it” or can’t understand how they can suppress and then not at other times.
Some people with Tourettes can’t suppress or choose not to and if I was in a position where I would tic openly in public all the time I think I would find that very hard. When I can’t control them in a supermarket or something all I want to do is leave and hide myself away. Part of the reason this is a hidden disability is because I feel society and its reactions have forced me to have to do this in order to survive, and it’s also hidden because I can appear “normal” for long periods of time. However, I am always ticcing but some tics just won’t be noticeable.
But, deep down instead of trying to hide it with pride, I wish I could....just be.
I feel the dyspraxia can make people think I’m thick if I can’t get somewhere or don’t know anywhere on a map... like literally I could not draw you the world map it would be incredibly wrong!
So I think it’s hidden in that way as it’s misunderstood and it makes me feel stupid anyway which makes me feel sad. I often forget people’s birthdays or don’t remember an important event and then it can upset others when I truly don’t mean it and just have profound difficulty with my memory. I desperately put measures in place to try and avoid this by writing everything down all the time no matter how small.
If you could make one invention that would make a part of your life a little smoother, what would it be? (welcome to draw a piccy).
I would definitely create a time machine. My life is so so busy and it’s impossible to fit everything in no matter how I try and manage it! Also due to the Tourettes and dyspraxia it makes things slower to do so a time machine would help me out majorly!
Does your disability give you a gift?
I think it makes me a bit quirky but maybe I’m like that anyway I don’t know... maybe it doesn’t matter how. I think it enables me to think really creatively as my tics come out with some random things that I would never think of in my “normal thoughts”. Ironically I am also very organised as it’s caused me to have to learn techniques to manage everyday life. I perhaps also get away with a lot as many people couldn’t just shout obscenities in public without having consequences... although of course I have had to face these consequences at times too.
What just really gets your goat!!!???
INJUSTICE! I can’t bear to see people and animals getting treated unfairly. I will always have people’s back and say speak out when I think it’s right to. To me it’s important to challenge and fight against things I believe in.
Can you tell me what projects you are involved in at the moment and how others might be able to get involved?
I go to a local Tourettes support group and there are many spread across the country both for people with Tourettes and those who are friends, family etc with Tourettes.
It’s important to recognise that these people should get support to. My partner has been and continues to be an amazing support and she has suffered at times due to my difficulties. Sport and exercise is something I do very often and my sport of choice is squash and I love playing it. So as many of you already know there are some great community projects, gyms and exercise classes everywhere.
Another thing I value is mindfulness and I use various different mindfulness apps every night to get me to relax and help with my sleep. I use; smiling minds, calm and a podcast called “tracks to relax”. I would recommend these to anyone and strongly would urge people to give mindfulness a go as it can really help us to stop in the moment and have time just for you in our chaotic lives.
You inspire me a great deal! Could you tell me someone that inspires you and your favourite quote by them…
I get far more inspired by what people do rather than what they say so I don’t really have one! So for me Martin Luther King was an incredibly inspirational man and did things based on what he said; “ I have a dream that one day little black boys and girls will be holding hands with little white boys and girls”.
Hidden Voices shines a spotlight on talented local people based in and around Plymouth. These people balance successful careers with a disability or life long health conditions.
Last year when I spoke out about my experience of Tourettes it liberated me. Speaking loud and proud about my condition has given me opportunities to connect to a diverse community of people and it has given me a whole new perspective to the work I create. There are some real tough moments, and moments where I want it to all go away, but there are also beautiful connections and wonderful people I have met along the road.
I came out of hiding, (though I do hibernate from time to time) and I wanted to offer others the platform to do so too. I have interviewed 5 people I know, who all have a hidden disability. Hidden sometimes by choice and sometimes hidden because of the nature of the condition. I hope you enjoy reading these honest and eye-opening posts and that you feel inspired to come out of hiding and share your true self!
I met Carina last year at a Tourette Syndrome meetup group. We both have Tourette Syndrome, and I have discovered through reading this blog that we have lots in common!
Meeting Carina has been an absolute blessing, and she is someone who has helped me greatly in my TS journey. She is super talented and cracks me up with her epic Instagram stories! I really wanted to interview Carina as I am always inspired by her approach to life- she navigates her day to day life in a way that suits her and she doesn't let her label define who she is!
Over to Carina...
What's your name? Carina Louise Miles
What do you do for job?
I am a Youth and Community Worker and currently work with children and young people in care and care leavers for a voluntary sector organisation. I also work creatively as a freelance musician/arts practitioner working with young people to introduce and engage them in the arts.
What do you do for the pure love of it?
This is a hard one as I do a lot of things I love so I will give you all of them! I love to play squash and have played this from a very young age, I have played competitively and have always enjoyed the sport so much. I LOVE the theatre and would never be without it, I enjoy watching shows (particularly musicals) but I also love to perform and (apparently) am most famously known for being the sugar bowl in the Beauty and the Beast theatre production (perhaps not my proudest moment!)
I love my beautiful family - Lisa my gorgeous partner and my dogs, Ruby the sausage dog and Wilma the Cockapoo. They are my absolute world and we do the greatest things together, but most of all I like to go out with them on our adventures and laugh together. I really enjoy making people laugh, being silly and taking risks! Humour is a big part of my life and to make someone smile or laugh makes my little heart beat with joy
SING! As my partner will tell you, I sing a lot!
Do you have a disability that you would consider as a hidden?
Would you be up for sharing a bit about your experience of this?
I have Tourettes Syndrome and Dyspraxia. These are both very important together as they affect my life a great deal. The Tourettes for me mainly consists of tics that include; grimacing my face, twitching and blinking my eyes, tensing my muscles, croaking my throat, humming, clearing my throat and shouting/saying/screaming all kinds of random things!
I have cluster tics otherwise known as “tic attacks” which basically mean a mish mash of all of my tics at once. I can’t communicate when this is happening, it can be very painful and last from anything between 5 minutes - 5 hours long. I consider this disability hidden because I very regularly suppress all of my tics, so many people don’t actually see them or know I have Tourettes. My tics are very situational and for example when I am at work I often don’t tic very much at all because I am distracted and things don’t trigger me very much. I tic mostly when I am at home and out in town etc etc.. too many examples to give!
The dyspraxia really impacts on my ability to navigate and I even have to use a sat nav to get home from work! So when I say to people I have difficulty with directions they normally take it to be a slight issue that would be “the norm”, and still try to give me directions when I just cannot follow them. I get lost in buildings, basically everywhere! It makes me very clumsy, I have a lack of awareness of spatial awareness and have trouble with fine motor skills.
Things like sewing are a no go area! I have trouble planning and organising which means I am very organised but it causes a lot of stress. I spend ages doing everything which is about a lack of awareness of time too. Memory is also a big issue which links both with the Tourettes and the dyspraxia.
If you could squeeze the world up into ball of of Plasticine and remold it, what would it look like? What would be the biggest change you would make in our society?
It would look like a shape with lots of bumps, swirls, ridges, holes, flat surfaces, twist and turns! Because it would be diverse, vibrant and cater to everyone’s needs and differences.
Do you feel hidden because you hide intentionally or does your disability just go unnoticed?
I am ashamed and embarrassed about my Tourettes and society can be very cruel towards individuals with differences, so as hard as it is to hide a big part of myself, it’s also easier sometimes. Most people who know me are aware I have Tourettes but don’t actually know how bad this can be for me like the tic attacks and having to be admitted to hospital.
Often when I am talking to people about my Tourettes I minimise how it impacts on me, therefore “hiding” parts of me and my condition. I regularly go to hospital to have Botox treatments in my face, neck and back muscles to try and lessen the tics but for me this isn’t about hiding anything it’s to treat how difficult the tics can be in my life. It can be incredibly distracting, painful and very annoying!
Granted, my tics can be very funny and when I was having a tic fit the other day my partner was laughing a lot as I was saying and doing the weirdest things. Like.. saying “how many eyelashes do you think you have and shall we go to the shops with them”. I have also had a tic for a while now where I just say/shout “Mum!”. My girlfriend obviously loves that one when I say it in public seen as I am 15 years younger than her haha! I am most comfortable ticing in front of my girlfriend and my beautiful Tourettes family friends <3
Sometimes I can’t hide it very well or I will go and hide in the bathroom or something to release them. This can cause confusion amongst others and often people think people with Tourettes “fake it” or can’t understand how they can suppress and then not at other times.
Some people with Tourettes can’t suppress or choose not to and if I was in a position where I would tic openly in public all the time I think I would find that very hard. When I can’t control them in a supermarket or something all I want to do is leave and hide myself away. Part of the reason this is a hidden disability is because I feel society and its reactions have forced me to have to do this in order to survive, and it’s also hidden because I can appear “normal” for long periods of time. However, I am always ticcing but some tics just won’t be noticeable.
But, deep down instead of trying to hide it with pride, I wish I could....just be.
I feel the dyspraxia can make people think I’m thick if I can’t get somewhere or don’t know anywhere on a map... like literally I could not draw you the world map it would be incredibly wrong!
So I think it’s hidden in that way as it’s misunderstood and it makes me feel stupid anyway which makes me feel sad. I often forget people’s birthdays or don’t remember an important event and then it can upset others when I truly don’t mean it and just have profound difficulty with my memory. I desperately put measures in place to try and avoid this by writing everything down all the time no matter how small.
If you could make one invention that would make a part of your life a little smoother, what would it be? (welcome to draw a piccy).
I would definitely create a time machine. My life is so so busy and it’s impossible to fit everything in no matter how I try and manage it! Also due to the Tourettes and dyspraxia it makes things slower to do so a time machine would help me out majorly!
Does your disability give you a gift?
I think it makes me a bit quirky but maybe I’m like that anyway I don’t know... maybe it doesn’t matter how. I think it enables me to think really creatively as my tics come out with some random things that I would never think of in my “normal thoughts”. Ironically I am also very organised as it’s caused me to have to learn techniques to manage everyday life. I perhaps also get away with a lot as many people couldn’t just shout obscenities in public without having consequences... although of course I have had to face these consequences at times too.
What just really gets your goat!!!???
INJUSTICE! I can’t bear to see people and animals getting treated unfairly. I will always have people’s back and say speak out when I think it’s right to. To me it’s important to challenge and fight against things I believe in.
Can you tell me what projects you are involved in at the moment and how others might be able to get involved?
I go to a local Tourettes support group and there are many spread across the country both for people with Tourettes and those who are friends, family etc with Tourettes.
It’s important to recognise that these people should get support to. My partner has been and continues to be an amazing support and she has suffered at times due to my difficulties. Sport and exercise is something I do very often and my sport of choice is squash and I love playing it. So as many of you already know there are some great community projects, gyms and exercise classes everywhere.
Another thing I value is mindfulness and I use various different mindfulness apps every night to get me to relax and help with my sleep. I use; smiling minds, calm and a podcast called “tracks to relax”. I would recommend these to anyone and strongly would urge people to give mindfulness a go as it can really help us to stop in the moment and have time just for you in our chaotic lives.
You inspire me a great deal! Could you tell me someone that inspires you and your favourite quote by them…
I get far more inspired by what people do rather than what they say so I don’t really have one! So for me Martin Luther King was an incredibly inspirational man and did things based on what he said; “ I have a dream that one day little black boys and girls will be holding hands with little white boys and girls”.
This photo best describes my experience because it’s like a tornado and keeps going round and round and has lots of other things going on around me at the same time!
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