Chantal Boyle:
Hi, I'm Chantal and joining me today on The Sunflower Conversations is Fire Phoenix Rising. Hi, . How are you?

Fire Phoenix Rising:
Hi, I'm good. How are you, Chantal?

Chantal Boyle:
Lyndsey, can you tell us a little bit about yourself please?

Fire Phoenix Rising:
Well, I'm Lyndsey and I've got hidden disabilities. Dyspraxia, Dyscalculia, and Dyslexia.

Chantal Boyle:
Your first diagnosis was of Dyspraxia, when you were in year six, did you say?

Fire Phoenix Rising:
Yeah.

Chantal Boyle:
So, and for people that don't know. Can you explain what Dyspraxia is, please?

Lyndsey Rowe-Gidley:
Yeah, it's like a coordination difficulty. We have a delayed reaction to things and I think it's four seconds and we trip over things, we don't pick up social cues. It affects different people in different ways. For me, I'm just clumsy, I've got no filter, I'm constantly getting into trouble for that and not knowing my left from my right. Can't tie shoe laces and it's just difficult in doing every day tasks.

Chantal Boyle:
So what was it that the teachers or your Mum, or whoever it was, thought, "Okay, well I think we need to see what's happening with Lyndsey?" What was it that flagged up to your adults around you that perhaps you needed to get a diagnosis?

Fire Phoenix Rising:
I couldn't talk until I was three. I found it difficult to do the everyday tasks like tying shoe laces and doing other stuff. And they'd just take me to the doctors who'd just say, "Oh, she's just a bit slow. Oh, she's just a bit delayed. Oh, she's just got the clumsy child syndrome." 

Fire Phoenix Rising:
What happened was, my Mam was reading the News Paper one day and there was a lad and there was a description of Dyspraxia in this paper. And then she shouted. I still remember this day like yesterday. I was in the bedroom, and she shouted "Lyndsey, this is you." I'm like, "What, What's me?" "This lads got something called Dyspraxia and it's just like everything that you struggle with and you have." So I read it myself and she read it out to me. I'm like, "Oh my God, it is." And then she found it really difficult to get me a diagnosis. She has to go like, "The school wouldn't take you on". She has to go to the head of the child... is it called the Child Diagnosis Team? or whatever you call it anyway to get a diagnosis... and then when they got a diagnosis... Yeah, it just all made sense.

Chantal Boyle:
It's sad to hear that your mum then had to fight to get the diagnosis. You were in year six, so had already done a lot of your formative education.

Fire Phoenix Rising:
Got diagnosis at the beginning of year six and I needed to go off to a special needs school. So we needed to get all this diagnosis before, for being eligible to go to a special needs school.

Chantal Boyle:
So you did go to the special needs school, anyway?

Fire Phoenix Rising:
Yeah.

Chantal Boyle:
And they were able to really help you specifically with dyspraxia, and the challenges that you face with that, and then is that where your Dyslexia was discovered?

Fire Phoenix Rising:
No, the Dyslexia didn't pick up until I was 19. I thought it was always part of my Dyspraxia and writing and stuff like that, and it was the Prince's Trust Program and then they picked it up and said to me, "Do you not think you've got Dyslexia?" I was like, "What's that?" "It's like writing and difficulty reading, writing things and seeing words jumbled up. I want you to get a diagnosis." So I said, "Well, I don't know, because I've got Dyspraxia," and I thought it was always part of that and they said, "There's no harm in just going and getting a diagnosis test." So I did, and then that's when I got diagnosed with Dyslexia.

Chantal Boyle:
And the final D, Dyscalculia?

Fire Phoenix Rising:
Yeah. I diagnosed that myself. .

Chantal Boyle:
It was the easy part!

Fire Phoenix Rising:
Well, I always struggled with numbers and stuff and had to and get that proper diagnosis, but...

Chantal Boyle:
So for someone who doesn't know what Dyslexia is, you touched on it briefly. 

Fire Phoenix Rising:
Yeah.

Chantal Boyle:
What does that mean for you?

Fire Phoenix Rising:
Dyslexia for me, is I have... I can read and write, but I have trouble interpreting what people are saying. And sometimes I can read the words wrong, like this poem. I always get "who" for "how" mixed up, and "what" for "where". 

Fire Phoenix Rising:
Constant confusion sends me in such delusion. When my eight year old niece tells me to, "Put the comma there," it sends me in despair. Using the dictionary sends me everywhere. I just want to tear out my hair. 

"Why didn't you go to English class?" they say. So you can sit there and look daft, because I can't spell the word raft? But what's that word? it don't make sense. This is constantly making me tense. When you can't play Scrabble or Google, constantly have to choose Google. Do you want the yellow or and sheet, sitting there trying not to admit defeat. What's that word, Dyslexia? What does it matter? I Can't spell it, anyway. 

Chantal Boyle:
Yes, that's good. I think we should say at this point that Lyndsey is a poet.

Fire Phoenix Rising:
Yeah.

Chantal Boyle:
I'll come onto that.

Fire Phoenix Rising:
Sorry.

Chantal Boyle:
We'll come onto that.

Fire Phoenix Rising:
Sorry some random poetry there. That's alright. 

Chantal Boyle:
That was beautiful, I love that, thank you doing that, and sharing that with us. So that's Dyslexia for you, and Dyscalculia? Have I said it correctly? Dyscalculia?

Fire Phoenix Rising:
Yeah. It's like the numbers and stuff like that. Seeing numbers the wrong way around, like I'm always getting 96 and 69 mixed up, and other stuff like I don't see numbers properly and I don't like to doing maths. I really struggle with maths.

Chantal Boyle:
I was going to say, does that mean it's not just the seeing, it's also the computing of numbers as well?

Fire Phoenix Rising:
Yeah. And adding and taking away, and multiplying work.

Chantal Boyle:
You are listening to The Sunflower Conversations with Chantal. To share your story and find out more information, details are in the show notes.

Chantal Boyle:
You are listening to the Sunflower Conversations with Chantal, to share your story and find out more information details are in the show notes.

Fire Phoenix Rising:
There's many things that I've achieved in my life and stuff that made me proud, because my Mam always encouraged me.

Chantal Boyle:
Yeah. 

Fire Phoenix Rising:
Like never to let it stop you.

Chantal Boyle:
So your disability is not disabling?

Fire Phoenix Rising:
Yeah. It's what I said, it's not a disability, it's an ability.

Chantal Boyle:
What tools have you learned to help you with that?

Fire Phoenix Rising:
Well, most of that is sitting on a computer. So I can zoom in on the text, I can use Text Reader to read on my phone. To get Text Reader to read that out, and use some of that software that Grammarly, and other stuff and send audio files.

Chantal Boyle:
How does that make you interact with the world? Like what challenges do you face?

Fire Phoenix Rising:
Well, I think, sometimes I get myself in a lot of trouble because I end up having no filter. I lived a sort of isolated life, I've only had a few friends that I've known from school; and because they are all like, married and settled down and stuff like that. Well I just sort of like, not been able to go out and socialise much, so I've been too much in my comfort zone, stuck within relationships.

Chantal Boyle:
It's the social connection really is what it is mostly.

Fire Phoenix Rising:
Tripping or getting food down there. 

Chantal Boyle:
Yeah.

Fire Phoenix Rising:
My best mate always comments saying I need a big bib.

Chantal Boyle:
A bit bib?

Fire Phoenix Rising:
Yeah. 

Chantal Boyle:
With the scoop thing on the bottom?

Fire Phoenix Rising:
Yeah. I'll get the sugar off with my mouth then won't I.

Chantal Boyle:
What coping strategies have you started to use, because if you don't notice that someone is unhappy with what you're saying?

Fire Phoenix Rising:
Well, I'll try to like apologize now if I've upset them. I'll say "Sorry, I didn't mean to upset you by saying that if I recognise that I've upset them. And I'm trying to get myself out of my comfort zone. Try to throw myself into more and more social situations, so I can learn and pick up like how to interact and what's acceptable and what's not unacceptable. Tell people about my Dyspraxia, and sometimes you overcompensate with Dyspraxia by trying to fit in, by like, meeting new people. Like show off, and it's just like, "Oh, sorry I've got Dyspraxia" and stuff like that, and they either accept it or not, and if they don't accept it, I don't see them again. 

Chantal Boyle:
Yeah. Yeah, So you're just quite open?

Fire Phoenix Rising:
There's only so much that I can do.

Chantal Boyle:
Yeah and I think if you're being honest and open and letting people know, then it's up to them to decide, isn't it? And, but you mentioned you've got a best friend?

Fire Phoenix Rising:
Yeah. My best friend of like 30 old years. 

Chantal Boyle:
Oh, that's nice. That's good. So is it a lady, or?

Fire Phoenix Rising:
Yeah, girl, yeah. I call her Sarah because she's only like five-foot-one. I call her "Titch". She calls me big Lynds have a friend called Lyndsey, so she calls me big Lynds.

Chantal Boyle:
So, she knows you inside out? And is your friend?

Fire Phoenix Rising:
Yeah, and she's got four kids and I absolutely adorable her four kids as well. They're like my own, and we've got a really understanding family. 

Chantal Boyle:
And that's so, if their understanding, it's important isn't it?

Fire Phoenix Rising:
Yeah, definitely. My mam has always tried to push me to achieve things, even things that I don't want to do. She says "oh just give a go". So I end up doing them. We'd always go on courses together and do stuff. 

Chantal Boyle:
Tell us about your poetry. Can you talk about it? How did you get into it, and how do you use it?

Fire Phoenix Rising:
Well, I started using poetry when I was 18, because the family situation very destructive, so my dad left due to the destruction of the family. And I end up going into a hostel.  I volunteered to move into a hostel because I was getting really angry and frustrated at my Mum and at my sister. It wasn't fair on them, and I'm going through all the emotions and stuff of being like, in this hostel on my own. I'm know I had support staff there, and my best friend was there, but; it's like the first time living in your own little flat and even though you've got support, it's still like, the emotions are very difficult. 

Fire Phoenix Rising:
So then I just started writing poetry just for myself. Just to get my feelings out there, because I always struggle with expressing myself. And, never showing anyone, just kept it to myself, and then one day, I just showed it to a person I trust, one of the staff members. And, ended up showing her, and she said "You're very talented, Lyndsey." And she read it and said, "You should write more of this." And then I just started to like think of things and writing poetry, and starting doing my poetry. There at the open mic, and the feedback I'm getting, and it's so positive, and then I just started thinking of poems when I was walking on my way round them, and it just stemmed from there. 

Chantal Boyle:
So Lindsey is going to be, the judge in the "Invisible Disabilities and Me" poetry competition, that we are launching. She is going to be one of our three esteemed judges. Lindsey not only writes her own poetry, but she also runs workshops. So, can you tell us about those, Lindsey? 

Fire Phoenix Rising:
Yeah, I've not got the workshops off the ground yet. I'm waiting for the new year and stuff like that, and people have been, a lot of people have been having "Covid" and stuff like that. So, I'm looking to get people to interview and maybe run like workshops on Zoom or something. To talk about their experiences about being judged. And I want it open it up to not just people who have a  hidden disabilities, but the LGBQ community and stuff like that, and interview people. And, once I've got their experiencesI  could turn it into a video at the end, or do poetry with it, and then send it out to people. Just to make them aware this is what people been through. and then just share their experiences. Enable them to give them the advice, maybe like run a campaign to parliament. I don't know, the possibilities are endless. 

Chantal Boyle:
That would be a really awesome project, and you volunteer. Where is it that you volunteer? Is it with "Shelter"? 

Fire Phoenix Rising:
Yeah, with Shelter, yeah. 

Chantal Boyle:
And, do you use any of your poetry when you're there? 

Fire Phoenix Rising:
Yeah I'm group coordinator for art and wellbeing, yes. And I use a lot of my poetry, and I've got in various things like Arthur and Martha and competitions and stuff like that. And exhibitions, that we've had through there. 

Chantal Boyle:
You are listening to the Sunflower Conversations with Chantal. To share your story, details are in the show notes. 

Chantal Boyle:
You tackle really hard subjects that really matter, and by using your skill, with poetry your able to relate that to somebody who might not have even, thought about the particular topic. 

Fire Phoenix Rising:
It can be a be really triggering for people that have experienced it. I like to express how I think it is and how I feel about that subject. And to look at it and write it home with poem. I want people to look at it from that perspective. 

Chantal Boyle:
Would you feel comfortable to recite one of your poems for us, and our audience now? 

Fire Phoenix Rising:
Yeah, which one would you like?

Chantal Boyle:
Well, why don't we go for "Don't Judge Me"? 

Fire Phoenix Rising:
"Don’t judge what you can’t see as I sat in the disabled seat on the bus the passengers with their prying eyes

Looking over full of disgust with their demoralising glares, makes me want to hang my head down with shame. Like I’m to blame for my dyspraxia the passengers think I’m  playing a game. Making the elderly walk the walk of shame to the back of the bus. I can hear all fuss, the chatter on the bus.

Why she’s sat there she doesn’t look disabled, she’s perfectly abled. What’s she doing sat there she should be disgusted with herself she don’t look like she needs extra help.

Why’s she sat there not wanting to help the elderly and infirm, selfish her, she gets what she deserves. Why did she sat down there its totally unfair. Where’s burning me like a knife to my chest.

Why is she not leaving that seat free for what someone with a wheelchair needs.

I will leave seat free but don’t need to make me feel defeated. It’s fair to say don’t know or don’t stare when you don’t know what’s going on there.

So don’t judge what you can’t see."

Chantal Boyle:
Beautiful. What do you notice about other peoples reactions to your health conditions? You said that you tried to explain. 

Fire Phoenix Rising:
Mostly it's positive, but sometimes I do get the odd person that that just gets offended and really upset and if I try to apologise, they just ignore me. 

Chantal Boyle:
So, you started recently wearing the Sunflower, has that helped?

Fire Phoenix Rising:
Yeah, it really has cause since I've been wearing it, I've got a lot of positive people showing kindness. I've gotten from the curious and stuff like that. 

Chantal Boyle:
What situations are you wearing the Sunflower? Where do you wear it? 

Fire Phoenix Rising:
Oh, I wear it all the time, everywhere. I'm excited to be speaking to you fantastic people, I'll even wear it more. 

Chantal Boyle:
Well, I'll send you a placement card, we can sort that out, maybe at the end of this. 

Fire Phoenix Rising:
Oh, thank you.

Chantal Boyle:
How did you?... How did you first find out about it?

Fire Phoenix Rising:
Well, I heard of it a while ago, like what people were talking about it. And like my best friend who we talked about, her sons have autism and they use them.  

Chantal Boyle:
Mm-Hmm...

Fire Phoenix Rising:
And, I've seen a lot of people wearing it and then... A girl did a documentary on hidden disabilities, and they were talking about who invited the Sunflower wearing and because of his daughter, and his disabilities and he said "You should wear it, even though you don't want to wear it, but just to be proud of your disability and stuff."

Chantal Boyle:
What were the reactions that... Did people smile at you? Where they kind? Did they acknowledge it?

Fire Phoenix Rising:
Yeah, there was just a lot more. I couldn't believe how much of a positive impact it had. Like people ll=et me go in front of queues, smiling at me. Not judging me sitting on the disabled seat, and being really helpful, considerate. 

Chantal Boyle:
Would you recommend the Sunflower to somebody else that has an non-visible disability?

Fire Phoenix Rising:
Yes, definitely. 

Chantal Boyle:
Yeah. 

Fire Phoenix Rising:
I'm proud of wearing it, like me, I didn't want to wear it but since I have it's changed my perspective completely. It's actually making me proud to wear it in here. While I've shown I've got a hidden disability and I'm not afraid to wear it. 

Chantal Boyle:
Your keen to raise awareness generally, aren't you of non-visible disabilities? You started a Facebook group to bring people together. What's the response feel like? 

Fire Phoenix Rising:
Well, yeah it really actually positive. I'm not getting as much people to comment on their own issues, but they comment on my mine. I want them to share it in the group.  Not many people here speak out about hidden disabilities and stuff like that. 

Chantal Boyle:
Yeah. 

Fire Phoenix Rising:
But I think that since Covid, the response is one of the positive things that come from Covid. 

Chantal Boyle:
And, what are your hopes for the future, Lydnsey? 

Fire Phoenix Rising:
One of my plans is to get all the signs on the buses. I want more night clubs and venues to be aware of hidden disabilities. I went to Manhattan's on Saturday and spoke to the Manager, and he wants to get involved in the campaign. An art studio in Manchester, that does live act shows, they wanted to get involved. So, I'm just speaking to business owners to get the word out there, and to make it more like, you're acceptable. 

Chantal Boyle:
With how you are and your personality you'll definitely succeed as well. I think it'd be really nice to end our chat with your new poem, about his disabilities, if your ready? 

Fire Phoenix Rising:
Hidden Disability Sunflower lanyard, I didn’t want to do this, it angers me
with the judgement within their prying eyes and the demoralising glare at me.
It shamed me to say that I have to point it out in this way, 
and make it obvious that I have a hidden disability.
Why can they not just accept me for me, without having to label on myself? 
this is not good for my mental health.
I wish people wouldn’t point at me or look at me and stare or judge me as much.
Think I’m just being awkward and not following the rules or acting just like a fool, 
or I want to give them covid by not wearing a mask.
And treating me like some sort of outcast, or some poisonous gas.
Or I want to take your disabled or elderly seat on the bus.
I had to give in to defeat and wear this label round my head.
The dread of humanity was like infested in my head.
Now I’ve started to wear it seems to ease the toxicity of others because they feel pleased and at ease and reassured that I have a hidden disability.
It’s made me proud that I have the ability to say that I have a hidden disability.
I'm no longer having to hide my hidden disability away.
And people are treating me better,
with kindness and respect, and I’m just acting myself.
It’s made me proud and given me the ability to say, I have a hidden disability.
Now I have no regrets even though I didn’t want be labelled to be treated this way but now I have it it’s filled me with confidence and pride in my heart,
I wish I had worn it from the start.

Chantal Boyle:
Lindsey, Thank you so much for giving up your time to have a chat with us today. I've learnt a lot about the Triple-D's. Dyscalculia, Dyslexia and Dyspraxia, and I personally think that you have amazing tenacity and perseverance, and hugely talented. I'm in awe of your poetry skills, I really am. And thank you so much for taking part in this and I'm sure that our audience will really enjoy it as well.