#26 1 in 0.0002% of the population, Dee Smith

Dee Smith has Friedreichs Ataxia, one in 15,000 people worldwide.

That means there is 0.0002% of the population have Friedreichs Ataxia. 

Dee explains University life and her career as an actress and model. How she battles with those less accessible to her and gives advice to others on how to be more exclusive.

She tells a story of when she was asked to be a bridesmaid - which led to her being forced to cut off her friend due to ableism

It was great speaking to Dee and seeing her outlook on disabled life.

Voiceover for intro and outro by Jennie Eriksen | LinkedIn

Music granted free of charge very kindly by Music: https://www.purple-planet.com . The track is called Hope and Inspire.

Transcript

Scott Whitney: 0:45

Welcome to the All4Inclusion Pod, today I am joined by someone who I've met on Twitter called Dee. Dee nice to meet you. Do you mind telling our listeners a little bit about yourself?

Dee Smith: 1:01

First of all, nice to meet you. A little bit about myself. I have a rare condition called Friedriechs Ataxia but I use it in a way that kind of fuels my career. So acting, writing, modeling I kind of love using disability inclusion into everything like that.

Scott Whitney: 1:25

Your condition, help me pronounce it. Is it, did you say it was Friedreichs Ataxia

Dee Smith: 1:32

Don't worry when I was diagnosed with it I no idea. It's called Fr iedreichs Ataxia.

Scott Whitney: 1:38

Friedreichs Ataxia, okay. So there's going to be lots of people who are going to be, listening who want to know what that is? Do you mind describing it for the listeners, please.

Dee Smith: 1:49

First of all, don't worry, because neither did I. When I was diagnosed, I was like what is that? I've never heard of it. It is rare. So 15,000 people have it worldwide, so it's a small number. The way I see it, it, impacts, it's a different cause though it's not what MS is, but it's very much to do with mobility, balance, speech things like that. So it's like MS but it's slower. But yeah, it's to do with mobility, coordination and balance and speech and like that. So that's why I describe it because people have often heard of, so they can have idea. Yeah. Okay.

Scott Whitney: 2:31

And how old was you when you was diagnosed with Friedreichs Ataxia

Dee Smith: 2:35

I knew something was wrong at 16, but because it was so rare, it took, at least, it took three years to get that, to get to atleast an ataxia. Definitive because with Ataxia there are like 300 versions. Yeah. So to get it took that we knew it was Ataxia, but it was finding out which part of it was. So I was diagnosed with that 19.

Scott Whitney: 3:02

19. Okay.

Dee Smith: 3:03

And it's a kids disease, so it's very rare. You get it late onset, but mine obviously showed itself later.

Scott Whitney: 3:12

And when you was you said you felt something wrong when you were 16 or felt not wrong, you felt something different at 16. Mentally, how did you feel, because I know for me it took two years to get a diagnosis. three years. How was your mental health, your mental wellbeing during that period?

Dee Smith: 3:32

I was scared all the time. I had insane anxiety about falling, tripping, looking different to other people because I may walk differently or I worried about doing things that people wouldn't have a second thought in doing. So I was very anxious all the time. All the time, and I was depressed because obviously I didn't know what was wrong and I thought I was going mad. Besides doctors tell me, it's not what it is, but I knew something was wrong. So it was a combination of all of that.

Scott Whitney: 4:08

And people listening will, hear three years, and three years is way too long for a diagnosis. And, yet people take sort of six, seven years and, it's, I think people don't always understand. How long it takes for some conditions to be diagnosed. So how did it feel then when you got that diagnosis? Because, we just said Friedreichs Ataxia I struggled even to pronounce it after you said it 20 seconds before. How did it feel when they described it to you first?

Dee Smith: 4:43

All confused because obviously we didn't know. We'd never heard of it, but it was strange cause it obviously it was an nightmare because the doctor had no bedside manner. Yeah, it was very cold and callous, like telling someone that this was gonna be their life and she gave like ultimatum of where I would be in five to ten years, which aren't true cause everyone with Ataxia is different. So it felt like I was being hit with this kind of, like I said, definitive. Oh my God, this is gonna happen to me and I'm not gonna be able to. So it felt very much like the floor was being taken out underneath me, but in a strange sense towards relief that I had a name to it. Even though the name was complicated, then I've never heard of it. But yeah, it was strange, happiness, relief, but also at the same time complete loss and I didn't know where I was going to be.

Scott Whitney: 5:49

And I guess when it's something that you've not heard of, once you've been told. You've got a condition whether, if it's something you haven't heard of, you've got no kind of founding to say, Yeah, yes, this, but you've,

Dee Smith: 6:02

I was told by the nurses not to Google it because apparently the information is very much this is what is going to happen. And it's very scary. And I was an idiot and I Googled it. I then scared myself. But yeah it's a hundred percent the condition, the symptoms you can get them all or you cannot or they'll hit you at different times. There is no one size fits all. Everyone with FA is different. They move differently and it affects them at different times. And it's not, like I said, it's not one size fits whole thing.

Scott Whitney: 6:42

Yeah. And when you've got a condition, you don't know about it, you don't well you know about it cause you're living it, but you don't know what the future kind of can, can develop into. And you've not got then anyone to be able to ask because there's so few people in the world who've got it. It's a natural thing to Google. And surely the responsibility should then be on getting better information on online. Yeah. Let's dilute the rubbish with the good.

Dee Smith: 7:16

Yeah. I was very lucky that there's like a, I don't know if it's four or five Ataxi centres countrywide and Sheffield, where I'm from is one of them, and it has an Ataxia specialist unit. It has nurses and a team, so you can go to. wIth questions, but they're not, it's not personal because obviously they don't have it. So it, they're giving you the info without kind of the personal

Scott Whitney: 7:48

No lived experience and it's all from a textbook. Yeah, so it's like a postcode lottery, like myself with FND, I'm in Manchester, but Manchester doesn't have a FND Centre, but if I was, in Bristol or I think there's one in Leeds, if I'm in those places, the treatment would look a lot different for me than it is where I am.

Dee Smith: 8:11

That's why I'm very lucky because of Sheffield has that unit and that place I can call or just go to, like every year I'll have a checkup with them and that is something that maybe other people won't. Even around the world, they may not have the same facilities that I do.

Scott Whitney: 8:30

Yeah. Yeah. So we, was talking a little bit before we, we started and I think wrongly very wrongly, some people hear about conditions that might be, and they think that stops you from being able to do things. However, you've then gone on to university and done very well at university. Do you mind just explaining to the listeners, A, what you've achieved at university, but B, also what was university like for you?

Dee Smith: 9:04

I've got an undergraduate degree in Creative Writing with honours. So it was like more modules to get the honours. I graduated that and then I went on to do a postgraduate in psychology and that was meant to be a year, but Covid happened and it was two years. I was at Sheffield Hallam University and I did, I was at the, there's two campuses, so for Creative Writing I was at the city and then I was a college for the postgraduate in psychology. And honestly, they were incredible. They were really understanding. They have a disability team that you can go to and talk. And they made sure I had everything. So much so they put me to a disability benefit system that the university offers. All universities offer it, it's national, and they gave me a car service. Not a taxi service, a private car service that would pick me up and take me any time to any campus, and they were absolutely amazing and I couldn't thank them enough.

Scott Whitney: 10:25

That's excellent to hear because I speak to people and they say sometimes at university they may fall between some of the gaps and I think it's really good to hear that balance that other side just, that some unis are really providing that top service that

Dee Smith: 10:44

On days that I couldn't get in because I was run down or I was dealing with symptoms. I emailed them and they understood, and they were incredible. They really were.

Scott Whitney: 10:56

Excellent. Now we, we have a partner podcast called The Purple Pound Show, and I'm recording an episode of that tomorrow, and it's all about recruitment. So what does recruitment. And job seeking look like for you?

Dee Smith: 11:11

For me first of all, I am not in a generic field. I'm in acting, modeling, writing. Unfortunately it revolves around look that is like how you get recognized or you. You've gotta have headshots, they've gotta see you. So obviously I made sure my headshots were involved the wheelchair, and I made sure I disclosed that. And I think because now diversity is so important and people want diversity, that it's become a wanted thing and they want more. People involved in that, which I'm very lucky is fallen at the right time for me. But it, it is like showing that you still can do these things with the disability and yet it's very look associated and physical, but the physical can look whatever that I want it to look like and happily I'm too sub stubborn to let the industry define me. So recruitment to me is however I want it to be.

Scott Whitney: 12:24

And that's how it, that's how it should be. There's a, yeah, you've used the word stubborn. And, yeah. Resilient keeps, the fact that you keep going. We shouldn't have to be stubborn. It should be it. It should be the same whether you are able-bodied or you are disabled, and accessibility should be the same.

Dee Smith: 12:50

Should always be that. But fortunately it's not the world we live in.

Scott Whitney: 12:54

No, quite agree there. So socially then how did university look for you?

Dee Smith: 13:00

It I'm not a partie or a drinker, so that was like not my thing. And I lived at home. I had friends obviously. It wasn't really a big thing for me, the social aspect. So I guess it, it, through no fault of disability, just my own, it wasn't have something that I was interested in,

Scott Whitney: 13:22

I guess that, listening to that socially it works for Dee. You got what you wanted to, which some people want the opposite. They want to be out every night and dancing up all hours of the morning. And some people just want to be able to, pick up a book

Dee Smith: 13:41

Give me good book, a glass of wine, and I'm happy. I don't need to go your gigs.

Scott Whitney: 13:49

So what books do you like to read? Because being having creative writing, I'm sure you've got an eclectic book.

Dee Smith: 13:57

Yeah. I love. Anything to do with like else and wizards and witches. And I like all of that. But I also like the supernatural aspect of things. I love real life fiction, but it thatnuses real life issues. Holly Born is incredible author for doing that. I don't know. I have a cat that I named Scout after How to Kill a Mockingbird, but if that gives anything away for I go towards, I dunno. I just think I love reading and I think it open, it opens worlds, so I always like to see. How vast the world can go.

Scott Whitney: 14:42

Yeah. I, I don't know how it is for your condition, but with my condition, I can be in lots of pain at different times and. If I'm in pain, that can then impact my mental health my sort of wellbeing. And what I like to do is I like to then pick up a book and that takes in my head, it takes me away completely. Yeah. Is that similar for yourself?

Dee Smith: 15:04

Correct. Very. I think as well, if having a bad day. It could be health wise, mental health wise, physical wise, whatever. Picking of a book for me just allows it all to dissolve or, going into a TV show and just allowing no thought no, nothing else. And I think it a good tool for that cause it allows you to not think or overthink, which I'm very good at doing. Yeah.

Scott Whitney: 15:35

And so what other strategies have you have you come up with or worked for you?

Dee Smith: 15:40

It's gonna sound really straightforward, but I think the main strategy that I have is one step at a time. Don't rush it, because if you rush, you are going to hurt yourself. So take it slow and also listen to your body. If your body is telling you we can't do it, accept it because it's, it may not, it won't last further, but understand that here and now you're gonna hurt yourself. Push it. So it's just, they're like I go by just step by step, slow and steady and listen to what your body.

Scott Whitney: 16:14

Excellent. So we've talked then a couple of positives, but I know you've faced some negatives as well. What do you want to just speak about a couple of examples that, that you've faced are the recently or some that have really stuck with you?

Dee Smith: 16:33

I think the one negative that's stopped with me came from a friend who I was friends with for eight years. She was, I would've consider a best friend close and she was getting married. And that was, exciting. And she, first of all wanted me to walk down the aisle in heels unaided. So no walker, no cane, no nothing. And Deborah, when I told her I was gonna be in a wheelchair because it was better for me, less, nerves or issues, she didn't like that. And she was like, Can't you stand? It's my wedding. And just made out that it was a be all and end all. And that kind of stuck with me because that person is ableist and I don't want them around. So I cut her off and was, I was done, but it did.

Scott Whitney: 17:31

Yeah, no, I can imagine. And yeah, it's not often on lost for words, but it's one of the, the kind of things hearing that I am lost for words. Yeah. In the sense that Yep, it, what is the equivalent to try to make. People understand who haven't got a health condition could be, I want to go on holiday with you to America, but I want you to fly like Superman.

Dee Smith: 18:00

Yeah, exactly. It's, and then she turned it around when I was like, Hang on a minute, I can't do that. And she turned around and threw, it's not how. People have disability to have this fear and basically saying it's my fault and I'm giving up, which going in, in, into a wheelchair or, using a aid is not giving up Not at all. So I was like, Yeah, I'm done. I couldn't.

Scott Whitney: 18:28

Yeah. And you can say about, there's some people that I've spoken with who, who who believe that things can be overcome by positive mental attitude. Let's read this book and then, yeah, after you've read this book, You'll be healed. There's a difference between a pure injury. There's a difference between an injury and an illness. There's differences between every disability and I'm not going to say there is not a single person who's got a disability, who hasn't reached a point where they've given up, but that isn't the case. Every person I speak with seem to be fighting every single day to keep going. And I find, when people speak to me and say, Yeah, read this book, Listen to what this guy said. I, it's hard to then, I almost just ignore the conversation and move on because it's,

Dee Smith: 19:32

Yeah. I think what the saddest thing as well is she saw me at my lowest. So obviously when I was diagnosed, I give up. I think it's it you've gotta overcome at yourself. There is no other, no book will fix it. No nothing. Go fix it. You've gotta do it yourself. And she saw me at my lowest and then this was, Getting everything back on track and like being okay with it and just dashed it. Yeah. Yeah.

Scott Whitney: 20:03

Okay. So if we was if we were looking and going we've got one fix that we want to put into to society as a. And you had that power, what would you do?

Dee Smith: 20:16

Equity. Equity, not equality, equity. So understand that everything needs to be accessible for everyone, and if it isn't, then it's not equity, it's not equality.

Scott Whitney: 20:29

So equity, equality, two completely different things. Yep. But does everyone see it that way?

Dee Smith: 20:36

No. No. People, I think people think you give everyone a equality and that's fine, but it's hang on a minute. If you give an able body person ladder, they can climb it. But if you give a disabled person who's paralyzed a ladder, They can't do it. So you giving them the same thing to get to the same place, but they can't do that. So give the able bodied person a ladder and the disabled person a ramp, they get to the same place at the same time, and they meet the needs that each other needs. That's equity and that is so important to.

Scott Whitney: 21:14

And that's a great way of a great way of explaining it

Dee Smith: 21:18

Cause using a ramp towards the equivalent of you climbing stairs, it's not any easier. It just benefits us the way stairs benefit you. Yeah. It's ridiculous when they say we're having easy, it's like we really don't. But Okay. Yeah

Scott Whitney: 21:37

and for me, going back to to the Purple Pound show, which we're recording tomorrow, which will be out before this episode comes out, but when people say you've got it, when people who are disabled have got it easy, but there's so many disabled people who want jobs, there's so many businesses that are crying out for staff. Yet, if you're not considering 20% of the population you're saying you don't want 20% of the talent and in that 20% of the population, there will be people for your business that are extremely talented. There will also be people for your business who won't be so talented. But they, those people will be talented for a different business.

Dee Smith: 22:18

I think that's what people need to understand and they don't, with jobs for disabled people, I think companies are, and I'm not siding with them, but I think they're scared because they're uneducated, they don't understand the ins and outs, nuances of disability. So they're scared that they'll get it run and get a lawsuit against them or something, which I think that is the problem. It comes from education, educate the company and then they're more likely to employ disabled people cause they're okay with it and they're comfortable.

Scott Whitney: 22:56

I completely agree with you so how do we overcome that?

Dee Smith: 22:59

It's a really simple solution. You get these CEOs or the tops to have a lesson, get, hire a disability team that goes to companies and just. Talk to them for a day, Talk to'em through the process and how disability is different. But it, you can work around it, educate them, and then they're less likely to be scared of it. You're scared of what you don't know. So educate, and then they do know and they won't be scared.

Scott Whitney: 23:31

If someone is diagnosed with any sort of form of Ataxia advice would you have for them?

Dee Smith: 23:39

Find the community, find the Ataxia community online, and there are, and just let yourself feel your emotions. Let yourself feel the loss of your old self and let you know, accept the new self and accept that everyone's different.

Scott Whitney: 23:57

Excellent. And then finally. If you could give one piece of advice to a hiring manager, what would that be?

Dee Smith: 24:09

Educate yourself, There are many. Disability education systems, even on Google. Look, you can look into it and educate yourself, or you can hire people and they can do it for you. If you not, if you are not doing it, you are part of the problem. And that is something we have to stop, but it's just education.

Scott Whitney: 24:28

Again, completely agree with that. So thank you. Thank you very much for coming along.

Dee Smith: 24:34

Thank you. Having me. It's been.

Scott Whitney: 24:36

Thank you everyone for listening. Join us again in a fortnight's time. Where we will have Alex Winstanley, who will be joining us in in two weeks. So thank you so much for listening. And Dee, once again, thank you very much for joining us.

Dee Smith: 24:52

Thank you.