- Hey everyone!
Today I'm here with...
- I'm Andrea.
- She makes content on YouTube as well
about disability stuff and spina bifida.
- Yeah, most of my videos are primarily about spina bifida,
which is the disability I have.
And than I do a wide range of speaking
on disability rights in general.
And then I do other like, fun food related videos,
but no one ever wants to watch it.
- You're like, love my food videos, please!
- Love them!
- So yeah, I wanna talk about
a few disability-related things in this video,
but the main one I think is
I wanna talk a little bit about invisible disabilities.
For anyone who's just never heard of this before,
can you just describe like, what is an invisible disability?
- So invisible disabilities is what it says in the name,
it's invisible.
You generally can't tell someone looks disabled.
They might have a heart condition,
they might deal with chronic pain,
things like that that aren't so obvious.
- Do you consider your disability to be invisible?
- Well, it's odd cause as a kid,
I only said I had a physical disability.
It was the way my doctors made it out to be, and my parents.
And spina bifida generally is a physical disability,
but my type, which is, this is a mouthful,
my type's called lipomyelomeningocele,
so have fun captioning that word.
- Lipomyelomeningocele?
- Lipomyelo.
- Lipomyelo.
- Meningocele.
- Meningocele.
Lipomyelomeningocele?
- Yes.
Mine's a rare type, and so I don't use a wheelchair.
I do now use a cane on and off,
so then I guess I still fall back
into being physically disabled where it's obvious.
But a lot of the things I deal with
have always been invisible.
I have a lot of my chronic pain.
But then it's hard to fully say it,
because if I wear bathing suits,
then it goes back to being physical,
you can see the scar on my back.
If I'm not wearing shoes and socks,
you can see my feet are clawed and things.
But I can I guess hide my disability easier.
- Yeah, okay.
Do people often believe you in public
when you say that you're disabled?
- No, no.
- Oh.
- I get argued with so much.
It's been like that since I was a kid, though.
So usually I never had, ironically,
none of you know me that well, Riley knows me,
I like arguing with people in public a lot.
- Yeah, yep.
- But as a kid I never had to argue with anybody
because my parents were my biggest advocates,
so they would argue on my behalf, especially at school,
and then my sisters would also do it at the same time.
Once I got hit by a car.
My sister took me to the emergency room,
and we know the spiel to tell the doctors like,
I'm allergic to latex, I have spina bifida,
I have Chiari malformation.
Oh that's my other disability.
- Oh, okay.
- But that one's purely invisible
cause I didn't even know I had it.
I had it my whole life.
- What is it?
- It's when your cerebellum, the back part of your brain,
mine's bigger than normal.
- Okay.
- And so it pushes on my skull.
And your cerebellum also has to do with your balance.
- Okay.
- So which is why I'm like, always falling.
My sister and I, we told the doctor everything,
and then the E.R. doctor looked at me,
and was like, I don't think you have spina bifida,
you probably just have like scoliosis.
- What?
- And my sister just yelled at him.
- Holy shit.
- Because his idea of spina bifida,
and a lot of doctors don't really treat us,
his idea was that we're all in wheelchairs.
And that's not true either,
- Yikes.
- Because a lot of spinda bifida people do use wheelchairs
but some use crutches, some use canes,
and then some are like me that will mostly walk
without any assistive devices.
It's easier when they can see my scar.
For some reason my scar lets them know,
and then I'm more believed, so.
But I can't be showing my scar all the time.
- Yeah, just walking around showing everyone.
- Like, look at this, and stuff.
Cause my mom's always told me that too if someone,
oh, I have a disabled placard.
And so every time I use that for parking,
I only use it when my legs are having bad days.
And I've gotten stopped by police officers every time,
for being like, "You're not disabled,
"you shouldn't be using this."
And then they just have to run my ID,
and then they apologize.
But it's always terrifying at the same time,
cause I'm like, I'm not doing anything.
- Yeah!
- I'm allowed to use these accommodations.
- But they're just seeing you and being like,
"Oh yeah, I don't think you look disabled."
- Cause I don't look like the sign.
That's why everyone thinks that we look like the sign.
And we don't.
- Have people who are not cops given you shit
for parking in an accessible parking spot or something?
- A lot of disabled people have.
- Oh yeah?
- There's a lot of able people that,
oh, so for people who don't identify being disabeled
or don't have a disability, the term we generally use
is that they're able-bodied versus disabled.
So, just.
- Yeah, so like, I'm able-bodied.
- Yeah.
- Yeah, or abled.
- And so a lot of able people will say stuff to me,
but a lot of disabled people say it more.
And that also just falls into
we're not educating on invisible disabilities.
I get it a lot with the disabled stall in bathrooms.
If I know someone's in a wheelchair,
then I will wait to let them use it,
cause there's no other stalls for them to use.
But if no one's in there that's in a wheelchair,
I will go in it, cause I do need
the grab bars to use the bathroom.
But then I'll come out, and then there are some people
who are just trying to play disability police
and will yell at me.
- Yeah.
- And I'm just like, um, I'm allowed to use.
It all just keeps going back to I'm allowed to use this.
Just educate yourself, learn about it.
- So one of the things I've learned recently,
I don't know, last couple years or something,
through watching you and Annie and other disabled YouTubers,
is that some wheelchair users can walk
or stand or whatever. - Yeah.
- Which is not a thing that I knew before.
- I learned a lot of very ableist things
about disability as a kid.
Cause I also thought people
who used wheelchairs were bound to them.
And that's not true.
Some people in our community
try to play this oppression olympics of like,
well I don't see you using a chair so you probably
don't have it as bad as me cause I use a chair.
And I'm like, that's so subjective.
- I mean, a thing that I've seen a lot is
people with chronic pain who use wheelchairs.
Or some sort of mobility aid, because they can walk
or do something, but it takes so much energy out of them.
Oh and the thing that I wanted to talk about
in relation to that was spoon theory.
- Yeah.
- And how people talk about
being spoonies and using spoons and stuff,
could you just talk a little bit about that?
- I would really like you to link an article.
- Okay, yeah.
- I can give you and article about spoon theory.
- Send me a link.
- I'm not good at explaining what it does.
- Okay.
- It's a way to give a visual understanding
to able people who don't understand how quickly
our pain can tire us out.
I don't identify as a spoonie,
for me I think it's more of an internalized ableism thing,
where I feel like my pain's not valid enough to do it.
But I will say, for my friends that do use it,
I will say "Oh I have maybe three spoons,
"so I don't think I can go with you on this hiking trip
"because I will be too exhausted to go to work tomorrow."
And things like that.
- Okay.
- But that adds into that shame
of even using mobility devices and things
when you have an invisible disability
cause no one can see it.
Cause I still sometimes don't wanna bring my cane anywhere
when I know my legs hurt, because I feel like,
well maybe I'm just making it up in my head
that I'm in this much pain.
- Yeah.
- And things.
- And you can't show people the pain,
so you can't prove that it's happening.
- I'm good at hiding it and stuff.
- Yeah.
- I've been hiding my pain since I was a kid,
cause it was nothing on my parents,
my parents were super open of like,
let us know when something's up and things,
but I could always see my parents,
they don't like to see me in pain,
so I would hide it cause I wouldn't want to upset them.
But that's the thing with invisible disabilities,
you get scared to tell people,
cause you have no way to prove to them.
- Yeah, you just have to be like,
trust me, I'm in a lot of pain right now,
and can't keep doing this.
- I mean, it's to the point that like,
I'm not in pain that much today,
but I went to bed last night thinking,
what if I'm in too much pain,
and it's raining in L.A. right now.
- Oh yeah.
- And the cold and rain sets off pain for me so much.
I was like what if today I can't take the metro?
And I know you would have picked me up,
and Riley's super understanding for everything.
Like, I don't know if you all know this,
Riley's so understanding.
- No, I'd have been like, sorry,
we just can't hang out anymore, nope.
- Yeah like, I'm done with you.
I knew if I could text you and be like, um,
I need you to pick me up, I can't do that walk
to the train station, you would have.
But there's still that fear that, am I gonna make you mad?
Am I a bother to you?
- Yeah.
- And so that's what invisible disabilities does,
you constantly are gas-lighting yourself.
It sucks.
- Another thing I wanted to ask you briefly
was about marriage equality for disabled people.
Cause this was something I didn't know
'til I think a few months ago, even.
- Yeah, I don't know every detail.
I can send you a link to my video.
- You made a video about it, yeah.
- Where I put the articles in it.
- Yeah, there'll be a bunch of links in the description,
you can go see about all this.
- So, well first there is a big misconception
that everyone that's disabled has SSI.
Not all of us use it, I don't have it.
I get my benefits from the Veterans Association,
and that has to do with how I got my spinda bifida.
Which go to my channel cause I have videos all about that.
But a lot of people do use it.
It's great, it's one of those federal incomes that,
I mean they're doing the bare minimum for disabled people,
but at least it's something.
All the rules the government makes for SSI
is just ridiculous.
It keeps disabled people in poverty.
You are not allowed to have in your bank account,
I think over a thousand or two thousand dollars.
And that's not just for checking,
that's checking and savings combined.
If you go over it by like, a cent,
you will lose your social security.
So that's just that.
- That's so fucked, that's just so fucked up.
That's just a cycle to keep them in poverty.
Which means a lot of us too, you can't win.
Because if I was on SSI, I got my bachelor's degree.
I should be able to get a job
that pays more than minimum wage.
But then if I was on SSI, even with my degree,
everyone wants everyone to get an education,
I still would have to get a minimum wage job.
But even then with some rules with SSI,
you're not even allowed to work.
So you have to live off of whatever money they give you,
and rent's getting expensive everywhere.
Food's expensive.
You can't win under SSI.
But then there's an added thing with marriage.
If I was on SSI, I married you, and you're able-bodied,
they would take away my SSI income
because their thought process is
"Well you make the money cause you actually can work."
Which puts couples in a lot of I guess disparity,
is that the word?
- Yeah, I guess.
So they like, make the abled person be the provider.
- They make the able person, yeah!
- You have to now pay for everyone in this?
- Which doesn't help because then
what if you just had a minimum wage job?
- Yeah.
- You can't cover all of my medical expenses.
- Yeah shit, it's hard enough
to cover for one person on minimum wage.
- Yeah, I just had one of my MRIs
for my Chiari malformation, that was over five grand.
I'm gonna be single forever is what I'm saying.
There's that, but then if you were disabled as well,
and you were also under SSI, and we got married,
they would take both of our SSIs, cut them in half.
- The fuck?
- Because we're married now, we're a union together.
- Yeah, so you only need the income of one human.
- Yeah.
- For the two of you, that's ridiculous.
- So a lot of people end up doing domestic partnership,
or they just don't get married.
Which sucks.
Which in turn means that
there isn't fully legalized gay marriage
because then you have LGBT people who are disabled
who can't marry their partners because they don't want
to jeopardize their health and their lives.
- So like disabled queer people are out there
just still unable to get married because if they do
they lose a huge chunk of their income.
- Yeah.
So that's why sometimes when people are happy,
like oh, we have marriage equality,
which is great, I'm glad a lot of
other people now can get married,
it shouldn't have been a problem to begin with.
But then I'm always like, what about the disabled people?
- Yeah, it's like we've gotten this step,
but it's still not everyone.
There's still tons of disabled Americans being left out.
- Cause that's the thing people forget,
disability is in every identity you can think of.
Every ethnicity, race, sexuality, gender identity,
we exist and people forget that aspect.
Cause even the most inclusive people
tend to forget disability exists.
There are some, I haven't looked into much,
but there's some regulations too
that disabled people can't adopt.
Or there's records of disabled people
getting their children that they had taken away from them
because the government thinks, "Well you're disabled,
"how can you possibly take care of a child."
And it's so rooted in ableism.
- Yeah, yeah.
- And there's just so many things.
- And so many people just don't even know what ableism is.
- Yeah.
- Like everyone knows about homophobia
and transphobia and racism is,
but you say ableism and half the time
people are just like, what?
I'm sorry, what is that?
- Yeah, and then I notice too,
cause I'm Cuban and Puerto Rican,
and even in my community and other marginalized communities,
I still see a lot of them make ableist jokes.
And say ableist things.
It just sucks because at the same time,
the Latinx community, cause I can only speak of that,
we obviously don't want people being racist to us,
and doing all of these racist things in media,
but then at the same time they'll make an ableist joke
on mental illness without realizing you're doing
the same thing that the oppressors are doing to us.
You're just doing it on someone that's an easier target.
I don't have the proper language in Spanish
to talk about my disability without it being negative.
Cause all the words are negative.
And in English we're starting to take the words back.
Like, disabled's a positive word for me.
It's a word I like using as an identifier.
But I won't say the words for disabled in Spanish
because the translations are literally like "incapable."
- Oof.
- And our community hasn't really,
we're already having arguments about using the word Latinx,
which I just learned too, that word exists.
It's not a new word.
South America and Central Americans
have been using Latinx for like a century.
- Yeah, yeah.
- It's not a made up thing.
Because it's shocking, non-binary people exist,
they've always existed.
So the Latinx community, they're already having trouble
wanting to use gender inclusive words.
But it's to the point where disability exists.
My grandma doesn't know the full capacity
of how my disability is.
Cause my parents had no idea how to explain it.
All my doctors spoke English,
so a lot of medical words I don't know
how to say in Spanish cause I've never learned it.
And then it's to the point, my ex,
when I met his sister, we were all chatting and stuff,
and then we thought of a story of one of my hospital trips,
and she asked me why I had to go to the hospital.
So I just said like, "Oh, I'm disabled."
And she was very shocked.
She looked at me like, "Well you can't be,
"cause our people aren't disabled.
"Like, that's not a thing."
- Oh.
- And I'm just like, what?
They're not mutually exclusive.
- Yeah!
- You want me to do the outro?
- Oh, do you wanna do the outro?
- Well, thanks for watching Riley's video,
and if you wanna follow me on things,
Riley's gonna put all my stuff down below.
- Yeah, there'll be a lot of links.
Go look at her channel, it's really great
and informative and stuff.
- Also follow me on Instagram.
Thanks for watching Riley's video,
support her and all her stuff,
and go be a patron on her things.
- Go be a patron on her things too.
- Also I'm gonna say it now,
- Oh, what are you--
- You better keep this in your video.
- Okay.
If you comment on Riley's channel
being a troll and on your bullshit,
I will find you, and I'll fuckin' destroy you.
You wanna argue?
Come to my channel, cause I'll fuckin' argue with you.
Leave my friends alone.
That's it, have a good day.
- Alright, well yeah.
Thanks, everybody, I'll see you next time!
- Bye! - Bye!
(8-bit musical beat)
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