The Palsy Podcast - Episode 15 - Shahd Zorob

 Ciaran is joined on episode 15 of the Palsy Podcast by Shahd Zorob. Shahd is a disability advocate, who has been part of the Local Motion assembly in Carmarthenshire, and been mentored by The Princes Trust. Shahd runs disability awareness training in order to help people better understand disability. Shahd also discusses her experience as a disabled Muslim. 

Transcript

SPEAKER_03 0:01

Hello and welcome to the Palsy Podcast with me, Kieran Fitzgerald. I'm a playwright, screenwriter, and podcaster from South Wales. And seeing as March is Cerbapalsy Awareness Month to market, I've decided to interview interesting people who have cerebalsy from Wales and beyond every day in March. If you like this episode, please stay tuned for more throughout the month and like and share. Now enjoy this episode of the Palsy Podcast. Hello and welcome to the Palsy Podcast with me, Kieran Fitzgerald. Thank you very much for joining me on this episode of the Palsy Podcast. If you've not listened before, this is what I'm doing to raise awareness of Cerberpalsey for Cerberpalsy Awareness Month. So every day during March, I'm going to be speaking to an interesting person who has TP who will be sharing their experiences. We're going to be finally worked a little bit more about their lives. Today I'm very lucky to be joined by Shad Zaw. Hi Shad, how are you doing? I'm good, thank you. I'm good. Thank you so much for for joining me. I normally start these questi these podcasts with the same questions. So today I'm gonna ask you like what was it like growing up with CP?

SPEAKER_00 1:50

Um it was a little bit diff difficult because my my peers were like, you know, um going out for to see their friends, uh to access um you know uh going on trips to uh go and um um to um to um feel it like to feel one of them was a bit difficult at times but I wasn't putting myself out there and now when I started to realize this bit is when later on in my in my prime years I didn't put myself out there enough.

SPEAKER_03 2:48

Did you feel excluded from certain activities?

SPEAKER_00 2:53

Yeah, I did feel excluded, but I didn't try my hardest, if you know what I mean. I didn't put myself out there enough.

SPEAKER_03 3:05

And like, did you have a good group of friends in school?

SPEAKER_00 3:08

I did to be fair. They were very nice to me and they still are and I'm still in contact with some of them.

SPEAKER_03 3:17

And did you go to a mainstream school?

SPEAKER_00 3:20

Yeah I did. I went to primary school, mainstream, and secondary school mainstream.

SPEAKER_03 3:28

And what were you good at in school? What did you enjoy doing?

SPEAKER_00 3:33

What was I good at in school? I was good at like uh um I was good at you know um um I I I didn't take less in the I I need ex I was um um uh part-time in special needs unit and full time in in in mainstream. So it was a difficult task to keep filling in each time because I felt the need to be in two different brain heads, like be with these children who couldn't learn and be with able-body people who could learn. So I really found it quite difficult at times to try and understand that. So um so what was I good at I was good at? Like I was an introvert and an extrovert. So that was like hard hardlined heat focusing.

SPEAKER_03 5:03

Was it di was it difficult because I suppose you didn't feel you really fit fitted in with the kids in the additional age class, but then feeling different to the people in the mainstream section as well, and being like in this in-between kind of space.

SPEAKER_00 5:20

Yeah, that's correct actually, because I felt the need like to be in two different bodies at each time. So so it was quite difficult to be like learning and being in society late later on in life, but I'm been beginning to read why all of this slowly. And also um also realizing like, you know, trying to fit in like in two different and to it trying to fit in in two different worlds was a difficult task in hand. To try and achieve and to try and succeed was quite a difficult task in hand. And then I realized that I needed to it to it to work in my, you know, what I'm good at and what I'm not good at in my life uh later on in my in my 30s, and then it was quite interesting because then I tapped into other things in my life that needed to be tapped in. So I needed to trust myself doing the work in a way that I didn't feel comfortable in doing the work. And I guess that is one of my missions in my life is working on myself as well as doing the work, as well as like excelling in the work. It's like three different parts, I guess.

SPEAKER_03 7:01

And like, did you experience any bullying in school and and what was that like for you? How did you deal with that?

SPEAKER_00 7:10

I know, I didn't choose bullying in my life, but I experienced racism in my life, but uh these are two different things. Also, these are two different things because they there are there are two different, you know, ex uh you know, themes of this. Bullying is different to racism because bullying is the one you get constantly bullied. Racism is when subtle racism happens and stuff like that.

SPEAKER_03 7:49

If you're comfortable, could you give a little like no pressure at all? I don't want to put you in a traumatic position. But could you give maybe an example of what you mean by subtle racism?

SPEAKER_00 8:04

Uh, I can give an example. Um um I was went to a college that I didn't choose to go to and I was forced to go to this college. And then I had problems later on down the line. It was people making the choice for me. I didn't make the choice for them. They I didn't make the choice for them. So it was me uh suffering and getting all these problems because they didn't listen uh about me because what I wanted is something else. I wanted to go to s to another college. Then, you know, it was quite, you know, hard to try and persuade and then I suffered in in like a year and a half and I, you know, bunked out a bit because they kept taking me out of certain of certain of certain courses. So and then I sort of realizing I deserve better and uh to be w one of the one of the people uh who worked there said to me um uh said to me, um, do you want to still carry on there? I said no, I wanna go to the other place. And then I started achieving sub thriving, sudden accelerating. So I was in my, you know, the place I originally wanted is this, not the re not the place I didn't want is the the place I was forced to be put in. And I suffered a lot and um I thank God I proceeded, proceeding with that position, because if it wasn't for me, I don't think I would have uh spoken out as open as I did now.

SPEAKER_03 10:31

And that and that that takes a lot of courage to speak out against injustice, to stand up for yourself, to to know that you're in the right and stick up for what you believe in. Was that how your involvement with like disability advocacy started?

SPEAKER_00 10:52

Um not necessarily. What made me realise is that that like the more you speak out, the more you put yourself in certain situations and then you start realizing what you've gone through is not uh uh a road that you're you're necessarily safe and well enough into it a hundred percent. But you are figuring it out day to day rather than uh rather than just going struggling and what made me realize that I originally wanted to do it for you know making you know, making myself aware, making other people aware, making especially able body people as well, because this is the target market that people don't hit necessarily. And they feel uncomfortable because they're not ready for the work. And I guess why they're not ready for the work is that they haven't worked on themselves. Unless you work on yourself, the work can come easy unless you try. I'm not saying you can do it fully, but try and make it fully so you know that work is not easy, it's a work in progress, but you can get there.

SPEAKER_03 12:25

And like you we're gonna talk about this a bit later on, but you run like disability women's training style workshops. Like how much is your own experience as a disabled woman impacting what you're doing now? How much is that influenced it?

SPEAKER_00 12:44

Uh it's influencing hundred like I would say 99.9 is influencing, but I'm still working on myself. I still don't know what is the right way of putting myself into categories or not to put yourself into categories. Interesting. R rather than rather than saying okay, I can work with something and try and it's uh everything is a tour. Everything is like a a tour that you work towards. It's like how will you do pluses and minuses? And if you don't do pluses and minuses, you're never gonna figure that way out that well.

SPEAKER_03 13:33

So do you think labels are useful sometimes, but they're not useful other times?

SPEAKER_00 13:41

Labels are useful, but labels are not useful to the extent of people trudging on their work. L like for example, labels is used for medical or considered you've got an issue, but labels are used off I think like labels should be used w necessarily and labels shouldn't be used when that person can achieve, even though they've got a label.

SPEAKER_03 14:25

Yeah. Like so how important how would you ex- I mean it gives you a really hard task, Shad, so who be prepared for it. Uh how would you explain the social model of disability to someone who maybe hasn't come across it before?

SPEAKER_00 14:40

Um, I would explain I'm slight I'm confused with this stuff because everyone says the social model of disability and the medical model of disability should should be used like in courses or something. But I don't think c correct me if I'm wrong, I don't think people use it in the best possible way. They just use it in a way that it's a model and they don't necessarily know how to work it. And they're still trying to to figure it out themselves rather than knowing the true model of disability.

SPEAKER_03 15:34

They might know it theoretically, but they don't know how to put it into practice and how to embed it in the way that they work and what they do.

SPEAKER_00 15:42

Yeah, they do that. They do that. I I went to a couple of course a couple of sessions with uh some charity, no names to be mentioned, but I think that um I think that um uh uh I think they do the course, they know the course, but do they know really how it works? I don't know really. Me personally, I think that like i if you know how it works, then it would be a vital tool for everyone to learn, but I don't I think they just say a social model of disability that that's it, we should go by it. Well, do you know how it works?

SPEAKER_03 16:34

I don't think you know I I think what you're saying is it comes down to education and greater education. Poor people know what it is, how it works. I'm gonna put a link in the description of this episode to the social model of disability, so people can have a read-up on that if they don't know what it is, and hopefully that'll uh educate some people. Like you are currently you're currently a member of uh the local motion assembly in Kamalan. Um can you talk a little bit about what does and how you got involved?

SPEAKER_00 17:14

Okay. It's a grassroots model for ra for radical change and I was ch uh chosen assembly member and I was selected and it's be it's it's an incredible process to go in and to find yourself out and to um to to to know who your true self is are rather than going into this, I don't know myself. And then it's a also you can uh do projects and uh I'm part of several groups and and you know I've learned that the only thing I haven't spoken so much in my life since doing locomotion. And this is the only thing that made me realize that I've spoken so much.

SPEAKER_03 18:28

And has it increased your confidence in be speaking publicly and definitely it has.

SPEAKER_00 18:37

And I also have um coaching uh uh um and give a shout out to to uh I Franks. Um so uh uh it has helped me to to open up, to open up in so many different ways and elaborate and I could, you know, understand why I was confused at the time. Also have the confidence, like doing this today, I wasn't gonna be able to do this w without the help of Bali Panx because this is my first ever ever podcast and this is my first ever, you know, experience gonna be through this. And this has uh been incredible and I also think um it has taught me as well that like speaking out is very important and you know local motion is is uh one of my elements in my life at the moment.

SPEAKER_03 19:59

And what kind of issues are you looking at through local motion, what you want to change, what you want to We are I'm part of a um an um I had a um um disability uh disability group.

SPEAKER_00 20:18

Um we talk about different issues and and um and um and we um dive in uh and we uh do different parts of the you know disability side and it's been, you know, it's the beginning of it, all this locomotion. And um so it's been an incredible understanding about myself and other people and also I've been with people just in a room for the last uh year and a half. So I haven't done anything like that before. Uh I've been working on my own for the last ten years in my bedroom here. So, you know, I've been doing all my projects and all sorts, so it's been a quite cathartic experience. Also different. Also, I would like to do another social experiment like this again, so it makes me feel comfortable in myself more.

SPEAKER_03 21:42

And has it increased your confidence? It seems like it has.

SPEAKER_00 21:46

Definitely, definitely, definitely. It has increased my confidence, definitely. And um it made me p realize that I need to do more things like that. And I I um It makes me, um, thrive on stuff like that and it makes me comfortable.

SPEAKER_03 22:06

And and you've also done the Princess Just mentor and scheme.

unknown 22:11

Yes.

SPEAKER_03 22:12

Like how did you get involved in that and what are you doing with the Princess Just?

SPEAKER_00 22:17

I w I was um uh doing a uh a course called Going Back to It and the um the woman that helped her run it said to me, Why don't you do the enterprise course? So I told her I want to do the enterprise course because I'm gonna run my own business.

SPEAKER_03 22:47

Um so uh uh you know um I I should mention run by your friend and my Lucy too, who I think is but is Lucy still running the Enterprise Course?

SPEAKER_00 23:02

Um I'm not sure. I'm not sure. So um and I have been with them before going to Anta Cymri because uh um Princess Trust is up to up to t uh thirty. Auntie Cymri is from um from thirty and over. So I'm now with Anta Cymru. Um I'm nearly nearly uh uh nearly there now. I uh nearly there with everything.

SPEAKER_03 23:47

So And am I right in saying you're about to launch your own business?

SPEAKER_00 23:54

Yes. Uh can you not quite not quite there yet, but like um uh still a while, but no. And what can you tell me about the business that you want to start and what your ambitions are workshops, uh you know, help helping people to do to d to help them with coach and in their lives and stuff like that. And I want to, you know, um I want to I don't to be honest, y you've put me on a on a on a on a point. I'm not sure where the business wants to go now because I I'm thinking it can go into several parts, but I'm not sure what uh and the number one, the w the workshops, the YouTube I've got and all sorts of, you know, things and I wanna, you know, experiment and try things out.

SPEAKER_03 25:13

What kind of things do you do on your YouTube channel? What kind of content do you make?

SPEAKER_00 25:19

Disability awareness and I interviewed my former PA and you know, just it's it's a it's uh I haven't done any recent work. Um, you know, I just left it be now. But I will get back into the summer and do do some more. And you know and more things will come out of it, hopefully. We'll see how it goes.

SPEAKER_03 25:50

And that you're talking about disability awareness, you run disability awareness training. So what what do you think needs to be improved in terms of the public's disability awareness?

SPEAKER_00 26:05

To be honest, I haven't found someone that does it phenomenally true to them phenomenally true to themselves or phenomenally they want to learn it.

SPEAKER_03 26:21

Do you agree with me or you don't what into what do you mean in terms of in terms of in terms of like do it like they know it inside of what is disappointment?

SPEAKER_00 26:38

They just do it straight off the cuff, I think. And when you when you say like I haven't found someone that does it 100% like down to a team, I will listen to over and over again.

SPEAKER_03 26:57

I think it's really important to have people like yourself who are in disability women's training who've got that lived experience of being disabled. How like important do you think that is?

SPEAKER_00 27:10

Um yeah, it is important, but it's not necessarily um uh it's not necessarily like like meant to be hundred percent disability or else there's no one to talk about disability. But I think it's not fair to say that it's fair to have people who are the same blood, and it's not fair to have people who are able bodied, so you can teach people who are able who are uh who are able-bodied and tell them what your disability is over time. You have to give people a chance, not like blank them out just because they don't have a disability.

SPEAKER_03 28:08

I agree, I completely agree, and I think people may be worried sometimes about saying the wrong thing or making mistakes, and and I think I guess I I guess um because people don't like to ask the wrong questions and and get more involved because they're too scared of rejection. I I think you're right in that. And I think if we can make people more comfortable, like non-disable people more confident confident in conversations around disability, I think that would be a really positive thing, opening up the conversation, which again is what I aim to do with with this podcast. Um and as as a Muslim, are there any particular issues that disabled Muslims face? And what is that intersectional? We've talked about you've talked about identity a lot, and it's been really interesting to hear your kind of outlook on it. But what is that intersectionality like between being disabled and being a Muslim?

SPEAKER_00 29:28

Quite different because you um try and try and um explore that because I haven't entirely explored it a hundred percent as yet. So it it like baffles baffles me to a certain extent. So how can I question the work? How can I do the work? Because I can fit more than one box and more than one implementation rather than a full thing, if you know what I mean. So it makes me wonder that it work, a project on its own, for me to work with on my own and say like answer so many questions and have it out there and say it's not I can't answer it.

SPEAKER_03 30:37

And you know, if someone can try and answer it, good luck to them because uh does that feel quite big and overwhelming and a big thing to delve into it?

SPEAKER_00 30:48

It feels complex. It feels complicated and complex. And why I'm saying that is when you are you are fit like constantly fitted in inbox and constantly trying to answer complicated questions and there's not real answer to it. It's very complicated. And at the end of the day, that's what we are here for. To to educate and to understand others and to work with each other and I guess one of these days I will get the work 100% right.

SPEAKER_03 31:30

But I guess it goes back to what you were saying before about taking people at face value and not necessarily making preconceptions about someone based on labels or identity as well. Oh.

SPEAKER_00 31:45

Yeah. Uh and identity and uh religion are two different things all together. So it's how you answer, I guess.

SPEAKER_03 31:58

Are there any particular like specific issues that face disabled Muslims that you've gone through?

SPEAKER_00 32:07

Um I haven't uh come across across uh come across them as yet. Um across them before, so it hasn't hit me. It has hit it hasn't hit me, so I can't answer that question for you. Sorry.

SPEAKER_03 32:26

That's okay. Um if anyone's interested in keeping that discussion going, please maybe leave a comment on the video or however you're consuming this. Um I'd be really interested to know if you listen to this and you think, oh I know I've got the answer, please pop a message and and I'll try and interview you before the end of March. Uh Shad, it's been um lovely talking to you. My last question to you is what is one thing that you wish people knew about cerebral palsy?

SPEAKER_00 33:02

Uh one th one thing is that it's complicated. It's it it like I'm st I'm beginning to understand it a little bit. Your body's tighter every day and it doesn't relax as normal uh normal people. Normal people. So it's you know, you're working with your body, you're trying to work with a normal body, but it's not easy and you know it's not it's not a map that we can draw and say it's like very nice and funky door. It can fit you well, it's more working progress.

SPEAKER_03 33:53

I guess it's about working out how your body works for you and adapting to that.

SPEAKER_00 33:58

Definitely.

SPEAKER_03 33:59

And every day is different, at least it is me. Every day is different.

SPEAKER_00 34:04

Me too, me too. It depends on how you're walking up that day as well, I think.

SPEAKER_03 34:12

Uh, thank you so much for your time today. It's been lovely speaking to you. Thank you so much for contributing to the position podcast.

SPEAKER_00 34:21

Thank you. A pleasure. A pleasure. Thank you for interviewing me.

SPEAKER_03 34:27

That's just about it for this episode of the Posy Podcast. I really want to thank Shared again for um coming on and being such a lovely guest. Um, we've got more guests coming up over the few days, so please um subscribe to Apple Podcasts, Spotify, or YouTube, however you're taking in this. And yeah, thank you for listening. But for now, it's goodbye for me, and it's goodbye from Sharon. Goodbye. Thank you for listening to this episode of the Pulsy Podcast with me, Kieran Fitzgerald. I want to thank my guests for joining me, and I hope that you'll stay tuned for the next episode and more throughout March. Thank you.