Disability

Full transcript: 'I changed my life by moving online' - 26 January 2018

Stef Sanjati Image copyright Stef Sanjati

This is a full transcript of 26 January 2018 'I changed my life by moving online'.

Stef Sanjati was bullied for her looks and had body shape and image issues.

Ouch's Lucy Edwards discovers how Stef turned her life around to become a successful social media star.

STEF - [Music] Hello little buns, it is Stef, welcome back to my home. In a little while, sorry I've been in a little bit of a hiatus because of something I will talk about later in the video - I mean it's only been like a week and a half but still. Hi, it's January 1st. it's a new year. We're going to do better this year.

LUCY - That was Stef Sanjati welcoming in the New Year on her YouTube channel. I'm Lucy Edwards and Stef, like me, is in her early 20s and is also a massive lover of social media. When she was a child Stef was diagnosed with Waardenburg Syndrome, which affects her appearance and hearing. She is also transgender and openly blogs about this along with many other things on her channel. I started my chat with Stef by asking her about her Waardenburg Syndrome.

STEF - They recently found out that in my mother's side of the family there was a genetic mutation. From there they also realised that because I had Waardenburg Syndrome I would likely be deaf or deaf in one ear. And it ended up that I was deaf in my left ear, and they weren't really sure until I grew a bit older, or if I would ever learn to speak really. It was a big area of confusion with how much hearing I had really.

LUCY - Were you ever scared at that point?

STEF - I remember that I used to go for hearing tests a lot, and I was in this little booth and they would play white noise over speakers and that would terrify me.

LUCY - What about other symptoms?

STEF - I guess you could say mutations in my bone structure and in the pigmentation on my hair and my skin and my body and everywhere really. So, for me my face is a bit different. I don't mind it. It's not something that I ever really thought about until I started getting bullied for it as a kid. The common names would be things like, I don't know, fish face or frog face or really any aquatic animal that has widespread eyes; that was usually the go-to insult. But I always thought I looked cool, I always thought I looked interesting. And now that I'm in a place where I make money really off of my appearance.

So, the major differences are my eyes are slightly more widespread than other people's. I don't really have much of a nose bridge, it's more of just a slope. And then my upper lip, well I don't have a cupid's bow. I've been told by doctors I have no pigmentation in my eyes. If I'm outside they're just like ridiculously bright blue because there's no other colour really interfering with the light there. And then my hair I have a very, very bright, very stark white patch of hair on the front of my head - that was the first thing they saw - that gets bigger every year.

LUCY - Wow. Can you dye it?

STEF - Yeah, I can dye it. It doesn't hold dye as well. If I bleach it first then it'll stick better. But I actually love the white hair because a lot of people, especially where I live in Toronto, it's fashionable to have white hair. I don't try to colour it anymore.

LUCY - Yeah, rock it definitely. A little bit of pink and blue and white, it all goes really well.

STEF - Sure, exactly. Why not?

LUCY - So, you said that you didn't really know too much about the origins of your condition but you said it ran in the female line of your genetics.

STEF - Yeah.

LUCY - Does your mum have symptoms?

STEF - She does, yeah. She has the entire facial structure. I pretty much look like a clone of my mother, it's kind of bizarre. But she didn't have any deafness and she didn't have any white hair from birth, but she did go fully white when she was, like, 26.

LUCY - I want to know a bit about the YouTube comments then to do with your Waardenburg Syndrome.

STEF - When I first started YouTube, before I made any videos about Waardenburg Syndrome, I would get a lot of comments like 'why do you look different? Why does your face look like that?' And a common one that I love 'what happened to your face?' And it's like, 'do you think something has to happen for me to look different from you? Do you think every single person has the exact same face?'

So, I decided to make a video about that and I threw it together in about ten minutes and I threw it up on the internet, and that ended up going, I guess viral would be an accurate description, it's approaching 9 million views. And I'm very grateful for that video because it gave me a platform and it gave me my audience, but at the same time I had a three-pronged response really: one was 'oh that's why you look weird'. Then another one was 'you don't look different at all'. And then the third one was 'you look cool'. I kind of like this interpretation or description of my appearance as a human-like alien, which I don't know if it's intended to insult me but I actually love it because it kind of implies this next level of evolution, which obviously it's not true. It's a genetic mutation, it's no big deal. But out of those three responses that one to me is the coolest because I kind of love sci-fi and I love fantasy.

LUCY - Yeah definitely. But when you said a genetic condition, no big deal, has it always been not a big deal, Stef? When were the times that you really thought, oh I just wish I wasn't like this? Or have there ever been those times?

STEF - I definitely had times like that when I was probably 13, 14 years old. I was basically a ball of self-loathing: I hated everything about myself. There was a period in my life where I couldn't look in the mirror without hyperventilating because I just couldn't stand it. But in hindsight, with the understanding I have now about myself, that was never really about my Waardenburg Syndrome or the physical features I have from that, it was more about my gender, and I guess the way puberty was affecting my facial features.

LUCY - You grew up in a small town named Wallaceburg in Southern Ontario, tell me what it was like growing up there when you were little.

STEF - I had a very happy, happy, happy childhood, up until puberty, and that's when the storm started really. So, I came out as gay in ninth grade because that's what I thought I was. I was still kind of full and pudgy and stocky. And all of the images that I was seeing of gay men in the media, which is what I thought I was, were these slender, skinny, blond, I guess for a lack of a better word I'll just say twinks. And so I thought I had to fit that stereotype so I ended up starving myself.

LUCY - When did you come out as transgender, Stef?

STEF - Oh gosh, not until after college. In high school I definitely experimented with gender but I didn't understand that I could be trans, I didn't understand that was a thing. I would shop exclusively in women's sections because I liked the clothes better, I liked the way they fit me, I liked the way they made my body looked. I had this phase at college where I tried to be serious and I tried to be masculine and I grew a beard and I wore blazers. I tried to go for that hyper masculine image thinking that it would save me maybe from young irresponsibility or something. But it didn't do that.

So, I ended up falling back into the femininity, and that's when I kind of realised: this has to mean something; I need to do some research. And I realised that I was transgender, and I pursued it and I got it, and life is good.

LUCY - I bet it was really confusing at that time, just this inner turmoil of feeling a different way than what your body was doing. I know it's been a year since you had your facial feminisation surgery this January, is there a part of you that has made you feel better about your syndrome because you've had that change to your face?

STEF - I would say so, yeah. I was very specific with my surgeon to not alter any of my Waardenburg Syndrome features. I want to look like myself. And he was very, very good to respect that wish. I feel like I can really embrace my face and I can really embrace the Waardenburg Syndromesqueness [sic] of it. I'm definitely very embracing of it at this point.

LUCY - Going back to your childhood then, Stef, to when you were being bullied how did you deal with it?

STEF - I kind of just withdrew; I kind of just isolated myself from the community and from my peers. My brother also experienced a lot of bullying for other reasons. He's always been very big into video games and so I kind of followed his example, and when I withdraw I kind of plunged myself into fantasy worlds and into science fiction worlds where honestly there are people with faces like mine and there were people that were a little bit gender divergent and it was like it was cool or it was adventurous and it was interesting. And being in those false worlds made me feel a lot better. I'm not sure I would have survived that part of my life without a digital escape or without, World of Warcraft was my big one, or even without YouTube, that was another escape for me. I pretty much took my life and I moved it onto the internet. That's where I did everything.

LUCY - I'd just like to play a clip of you and your friend Ty from your YouTube channel when you're discussing dating. Let's hear it.

[Video clip]

STEF - Oh, see before transition I had a super unhealthy relationship with dating. I just didn't really date. I was a gay and I was 18, 19 years old in a big city. Just put the pieces together when you have all these apps happening; I was all over the place. And that's okay if you're being responsible or whatever.

TY - You're you.

STEF - But I didn't really have any experience dating beforehand because I didn't do it.

TY - Yeah.

STEF - But then after transitioning, I don't want to say that transgender makes you feel more blah, blah, blah, but definitely the shift went from something more physical to something more companion oriented in terms of what I wanted out of dating, I guess, or meeting people.

[End of clip]

LUCY - So, Stef, there were you very open and honest with us, and you give a lot of yourself away on all of your videos in fact. Do you ever think that the audience out there are going to leave nasty and negative comments?

STEF - When I was 12 or 13 the internet was still around for a while but it was still somewhat young too and it's not what it is now, and you just didn't really, or at least I didn't expect to find that on the internet. I mean, trolling and all of that stuff it snowballed and it happened very quickly after, but it wasn't as rampant as it is now. So, it didn't feel as scary to me as walking into a room because I couldn't see the people that were trying to belittle me. There was just something very different about it; it didn't feel that way at all to me.

LUCY - So, was clicking upload on that first video like a defiance towards all of those bullies?

STEF - That's an interesting way to think about it. It's possible. My first video I uploaded when I was 13 years old, it was a Lady Gaga Paparazzi music video make-up tutorial. It was awful but I loved it. I don't think it was so much out of defiance as love for myself. It wasn't so much a retaliation as it was celebrating what I could do and what I loved, and it felt like a space separate from them and safe from them where they couldn't wreck what I was doing.

LUCY - As you said it was an escape to watch people. Was it an escape for you to create those videos?

STEF - I think so to an extent. I mean, I was never being anyone but myself. I was always myself and I was always doing things I wanted to do, but it definitely was a big time sink. Back then I had so little social interaction that any time that I could spend talking about myself was like the holy grail. That was more the escape was not necessarily running away from - well it was running away from those people I suppose.

LUCY - In real life you've run away, but how do you deal with that person online, Stef, do you block them?

STEF - No. I've been tempted, but the reasoning is I don't want to prohibit people that have good logical discussion that want to learn. And I also don't want to stop young people that need a place to go and vent or to explore their feelings like I needed when I was a kid, I don't want to deprive them of that space.

Every day I go through and I curate the comment sections. And I don't delete small criticisms or small things like 'I don't like your hair'. Like whatever, okay, I don't care that you don't like my hair. But I make a very conscious effort to get rid of straight-up malicious mean comments that really serve no purpose other than to belittle me or somebody else. I put a lot of effort into getting rid of that problem without disabling the comments all together, because I feel like there's a lot of value in having those discussions.

LUCY - Stef was really interesting because she used gaming and social media to cope with her problems at the time. And we see the media full of kids being told to get off their smartphones and mobile devices and get out in the countryside, but actually Stef did the opposite and it really did help her.

If you want to know more about Stef check out her channel on YouTube.

If you're streaming this podcast over the web remember you can subscribe to Ouch on Apple podcasts or wherever you get your podcasts from. You can also get in touch with us, we're on Facebook and Twitter @bbcouch. Remember to email us ouch@bbc.co.uk. And if you want to check out all of our other content bbc.co.uk/disability. Thanks so much for listening to this week's Ouch podcast. I've been Lucy Edwards and I will leave the final goodbye to Stef.

STEF - Until next time. Just remember keep your head up. If you're in a dark place right now you will get out of it. We're going to get out of it together because we're already well on our way. Okay? I love you so much. Bye. [Blows kisses]