Living with cerebral palsy, Stephanie Esther Fam | In The Spotlight
'This is how God made you so you have to work with what you have' or so she was told. Born with cerebral palsy, Stephanie talks about that arduous road of accepting herself for who she was, her connection to poetry, and finding purpose through performance.
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Watch more: https://www.asiaone.com/video
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00:00It took me a while to understand that that's how they see me
00:03but actually, I don't see myself as an inspiration.
00:07I'm just living my life as best as I can.
00:16Hi, my name is Stephanie S. The Femme.
00:18I'm 39 this year.
00:22I'm a poet, writer, public speaker, theatre maker
00:27daughter, sister, friend and art lover.
00:32I was born with cerebral palsy.
00:35My parents didn't really tell me I was disabled.
00:39In fact, the word disabled only came about when I was in school.
00:45All the while when I was at home, they only told me I was different.
00:51This is how God made you, so you have to work with what you have.
00:57CP stands for cerebral palsy.
00:59It affects me more on the movement and physical side.
01:03It doesn't affect my mentality as in I'm perfectly normal inside.
01:10It is similar to autism where it's on the spectrum.
01:17So it's a very wide spectrum.
01:19Some people are most affected physically like I am
01:23but some people with CP also
01:25it affects them intellectually.
01:27But the common misconception is that because I have CP
01:31I'm also intellectually disabled.
01:34Despite all the work that society is going through
01:41it still happens that people stare at you like you're some exhibit in a museum.
01:47You get really nasty looks from people.
01:51When they see you being fed by your helper
01:56at the food court, they tend to be like
01:58what circus fixture is this?
02:00And they will stare at you at the food court all the way
02:03until you stare back at them until they leave.
02:06Or they will come so close to your face and tell your friend that you are very pretty.
02:11It's as if you don't understand what they're saying.
02:15It's very scary sometimes.
02:17Secondary school, I would say it was challenging
02:20because in the first place, you have to take into consideration
02:24everyone was young and when you're young, you say stupid things.
02:28Or you behave in ways that you wish you didn't.
02:30So for me, one of the hardest things was being fully accepted for my disability.
02:37People will ask you weird questions like
02:40how are you going to make out with your boyfriend?
02:43It's incidences like that where your parents cannot possibly prepare you.
02:50And being young and innocent, you really do not know how to reply.
02:57But deep inside, it just hurts you because you finally realise that
03:01yeah, maybe my difference is going to be really profound
03:06such that it will affect these normal things that people do.
03:11And people just don't know how to ask you in a nice way
03:15such that it doesn't hurt you.
03:17As an adult, I've learnt to deal with it better but
03:24I can't say it doesn't hurt me at all.
03:27You wish you were in a different body
03:30but at the same time, that feeling goes away after a while
03:34because you cannot imagine yourself in a different body.
03:39If I were to walk today, I can tell honestly I would be so freaked out
03:44because my brain would not know how to comprehend things.
03:49To imagine yourself being able to walk after all these years of being the way you are
03:55and having to journey and having to accept yourself the way you are
04:02I don't think I would change a thing about myself.
04:05From all that I've experienced over these 30-plus years
04:10I don't regret anything.
04:11In fact, I thank the universe for every knock that has happened.
04:19Because if not for the knocks and the tears and the pain
04:24I wouldn't be the advocate that I am today.
04:28I'm a very introverted person.
04:29I would love to just sit in the dark and be on my phone and play my games and write.
04:35As with most things in my life, writing happened by accident.
04:39I started being an avid reader first
04:43so I unknowingly transited into writing poetry.
04:49One of my first poems was written also because of an accident.
04:55Basically because I was bored of doing homework and I got so deviated
05:01I just started typing on a blank document
05:04then I showed it to my late dad.
05:07And I was like,
05:09Daddy, what do you think of this?
05:10Then he was like,
05:12Eh, you actually wrote that ah?
05:14It's actually quite nice.
05:16And I guess things fell into place
05:23as usual by accident.
05:26It wasn't a smooth journey when I was trying to publish my collection
05:31because it went through several attempts before it actually got published.
05:38It took me 18 years in total to compile the whole collection.
05:44If you ask me, what is shades to me?
05:47Shades is more than just my poetry collection.
05:51It is actually a diary of my youth.
05:53Not just the teenage years but early adulthood as well.
05:57In a way, it's in memory of my dad
06:00because shortly before he passed away
06:03he said this sentence to me
06:05All you need to do is publish one book and it will set you for life.
06:10One of the things I used to do was
06:13every time I spoke at Toastmasters
06:16which is a public speaking platform
06:18I would get my friends to video me.
06:21So I happened to put one of my contest speeches on my YouTube channel
06:27and that's where I got suddenly spotted by someone.
06:31I went for an interview.
06:33There were at least one or two rounds of audition.
06:36I had to write my own monologue.
06:38I had to perform it.
06:40And it was very nerve-wracking.
06:43After getting through the audition
06:44I had to work with this playwright from the UK.
06:48Her name is Katie O'Reilly.
06:50And it was a production called
06:52And Suddenly I Disappear.
06:53It was the first Singapore-UK disabled artist collaboration.
06:59I think I proved everyone wrong.
07:02The cathartic experience happened in front of whole crowds
07:06but I will never give that up for the world.
07:10It was after the actual production
07:12we had another mini showcase where we had to write another monologue.
07:17But apparently my writing wasn't good enough.
07:20I had several meltdowns.
07:22Even my mum was like, if you can't do this, please stop.
07:26I cannot see you this way, you know.
07:28And my mum and I, we don't often see eye to eye
07:31but to have your mum tell you that to your face like
07:35I cannot see you like this.
07:36So having to watch her see me break down to the level I did
07:41it was like, okay, you know, enough.
07:44I don't know whether I'll be strong enough for this industry.
07:49In fact, to be honest, I still question myself in this industry to this day.
07:54It's a lot to deal with.
07:59I'm sorry.
08:05At the time of this video recording
08:08I have just finished my first full-length play
08:12based on seven poems in shades.
08:15The title of the play is Absence.
08:18For now, that's all I can tell you.
08:21Despite the busyness of scheduling and stuff
08:24I really love what I'm doing and I hope to have more work come my way in the future.
08:30I think the work I'm doing now is not just for me and
08:34not just to satisfy my need for more work
08:39but it also paves the way for younger Singaporeans who are disabled
08:44to help them know that there is a path for them in the arts.
08:48You just have to keep searching and hopefully you'll find the right spot that clicks with you.
08:54I won't deny that there's a lot of work we still have to do for the disabled community
09:01but I'm really happy that I'm a part of it because
09:08if not me, then who else?
09:11My message for the future or the younger generation of disabled people
09:19don't always expect people to understand that you're disabled.
09:25And life isn't going to be fair
09:28so you have to make things fair for yourself.
09:33And complaining isn't going to get you anywhere.
09:36Just do the best you can.
09:42I'm going to do the best I can to make the world a better place for disabled people.
09:47I'm going to do the best I can to make the world a better place for disabled people.