Amber: The reason I do cosplay is to show
like the disabled community that there is more to life
than just being disabled.
When I’m not dressed up in cosplay costumes this is the real me.
My name is Amber Guzman, I am 32
and cosplay saved my life.
People always come up to me at conventions and they literally say,
I can’t believe you did this huge costume with your wheelchair.
Because I love incorporating my wheelchair into my cosplays,
you kind of just don’t see it. So it is rare,
it’s rare to see a well known cosplayer with disabilities out there yeah.
Hi everybody my name is Amber Kohaku_Chan,
I am a disabled cosplayer, I love representing the disabled community.
I’m just so lucky to be here so it’s so nice to meet all of you.
[Clapping]
Muscular dystrophy and how it affects me is it’s a hereditary illness.
I was 20 years old when I was diagnosed
but I started noticing that I was having more problems walking,
after the age of like 15.
It basically is an illness that kills off your muscles
and makes it hard for you to like rebuild your muscles.
And so it was basically year after year I would lose
like another ability and slowly lose something else.
And that’s what has been progressing like.
That’s basically why I call myself like a living doll.
I would need help to sit up,
I need help to bring my hands to my face.
So that’s why I try to do as much as I can now
before all that is gone.
Martin: And what do you need for the Maleficent?
Amber: Just get the whole costume out with the horns,
and the main armor and then the underneath piece.
Martin: Okay sounds good.
Amber: I met my husband at a gothic punk rock show.
I met him when I was 17.
Yeah so we’ve been together for a long time.
I think before we were living life like any other couple.
We would you know do stuff and be all young and free,
and crazy and wild and drink a lot or do
you know parties and stuff.
Martin: When she got diagnosed it really hit us both real hard you know.
I care for her, I do with love so
it doesn’t cost me or I don’t feel like it’s a burden I love to do it.
I try to do my best and I try to do as much as I can
to make sure that she lives a regular life you know.
Amber: Yeah this piece when I was making it I was finished,
like completely finished and it was sitting on a mannequin.
And it unstrapped and fell off the mannequin,
and completely split in half.
And I had to like redo the complete inside.
But yeah I’m going to include this one because this just fell off
and I’m just going to take standard hot glue to,
to put this back on and then paint and fix some,
some areas that could use just a touch up before the next con and stuff.
The reason I do cosplay is to show like the community,
especially like the disabled community that there is more to life
Than just being disabled.
But I think when you become less mobile you end to think like I can’t do this.
I won’t be able to do that.
And when you do stuff like cosplay you instantly think I can do this.
We are going to go to Lavish studios in LA.
Whenever I go up there they’re just very helpful.
It is perfect for people with like, with or without disabilities.
Representing, you don’t see it that much, it’s awesome.
It's fun to be able to be that person, for others.
Oh wow that one looks good.
Martin: I mean I just use her as a motivation.
She’s the one with the sickness, with the illness I should say.
And I don’t see her not motivated.
I don’t see her you know complaining about certain things,
and I’m like if she doesn’t complain how am I going to complain for these
other little things that don’t really have any significance in life.
I’m very grateful to have her and both of us learn so much from this illness.
And we’re very thankful for, for just being where we are
because we can be in a way, way worse situation.
Amber: He’s my, my , my arms and my legs
he’s he’s my everything.
Like thanks to him he’s, he’s my muscle he’s my strength yeah.
Cosplay means so much to me because it,
it saved me from having to think like man I’m so sick,
I can’t do this, I can’t move.
I can’t even get up to go to the bathroom by myself.
But that’s why I, I appreciate like cosplay and modeling
and doing stuff like that because it occupies my mind
from thinking about the negative.
Yeah because it will, it will kill you, it
will kill you if you just drown in depression.
Having a disability doesn’t mean your life is over.
It doesn’t mean that that’s the end or
that you have to stop your dreams or your accomplishments or goals.
You could do whatever you want while being you know disabled or in a wheelchair.
It’s just you might have to find a different route,
but you could always still get to the end goal no matter
what you’re doing.
Never give up on your dreams while being disabled.