Andrea: Hey everybody welcome to #SpinaBifida.
(pop)
A: So today I have my friend Katie.
She has a channel on YouTube called...uh...
is it Katie Scarlett Speaks?
Or Katie?
It's Katie Scarlett Speaks and she talks a lot about
being a Spoonie, having a Chronic Illness,
and Feminist topics.
So she's super great, she's one of my best friends.
And if you were like to meet both of us off camera
you would find that we are the same person.
Uh there's an ice cream truck, multiple ones outside
so if you hear this
I'm sorry.
(ice cream truck music playing in the distance)
It's going away now.
So today on #SpinaBifida we're going to be talking
about relationships and being disabled.
Both of us identify as being disabled.
And my partner, he is abled bodied.
Katie: And uh my partner is abled bodied
but has Autism.
A: So we're going to talk about how those relationships
intersect, how we navigate that because
while Katie's partner has Autism
he understands more of the disabled community
and is around it more often.
While my partner is learning from the beginning, through me mostly.
So I have some questions that Katie wrote out
for me because she's way more prepared than I am.
So our first thing is
dealing with rejection or imagining
it will come and fearing it.
How do you deal with that?
K: Well I feel like it's something that a lot of us deal with
as people with disabilities especially when you
are in a relationship.
I feel like it's something that we, we project
and manifest onto our partners.
Going into a relationship you think of all the ways
that they can reject you and you think of all the ways
they can say no to you and that they don't want you
and they think that you're going to be ugly.
Or they think you're not going to do things properly.
Or they...that they think you're going to be lazy or a failure.
It takes a lot of work to reprogram your brain
and realize that you need to give them a chance
to prove you wrong.
While the rest of the world constantly proves you wrong
on a daily basis, you're with this person for a reason.
A: Yeah
K: Like you've specifically stuck it out with them
because they've proven you wrong and they've
proven to be a good person to you multiple times.
So you shouldn't put a wall up to them.
Unless they've proven to you otherwise.
You know what I mean?
A: I mean..I get that too.
Also I think they're going to prove you wrong
in a way you didn't expect to be proven wrong.
K: Yeah!
A: Because they're not going to meet what goes on in your head
on like "oh do this to prove me wrong".
And they're not going to meet that.
I didn't fear rejection of my partner
liking me at first, because he approached me.
But I just started getting along with him and I was like
"Oh, I like him way more than I think".
The parts that I feel rejection on that is hard for me to work through
sometimes is when our lives get a little bit hectic
or he's too tired and doesn't want to be intimate
like with sex.
The first time that happened, he was just very exhausted
it was a long day and
I wanted to have sex and he didn't, so when he told me no
I respected the fact that he didn't
want to have it but I started
spiraling and being like "he doesn't find me attractive anymore.
It's because of my disability.
He's going to go off and not want to be with me anymore."
And that wasn't the case he was just tired.
K: Yeah
Um and it's those little like
micro...um
ableist thoughts
that we're told that we're not good enough.
But I just deal with it, I talk to him.
Because when my brain started going down that spiral
I told him I was like...I asked him, I was like
"Do you not find me attractive?"
He was like "No I'm just tired".
And just talking it through with him
I was able to realize "okay everything's fine, like nothing's a catastrophe".
K: Like you just need that validation that what you're thinking
is 100% not what they're thinking.
And you need to give them the opportunity to
tell you that and make sure that
you're not putting words in their mouth or
like thoughts in their head that they're not even thinking in the first place.
A: So then what are ways that you learn to accept help?
K: This is the area that I struggle with the most.
And the area where my anger comes out the most
in my relationship.
And like...my partner will
probably be in the kitchen laughing right now
and smirking to himself being like
(mocking partner) Mhm, yeah it does girl.
(normal voice) Because it 100% is because
when I am in a lot of pain
I get, I internalize everything.
And I get really quiet, and I get...and I'm like you.
Andrea and I are both really loud and really talkative people.
So then when all of a sudden we're not,
something's wrong. (laughs)
When I'm in a lot of pain and when I'm really quiet
or when I'm staring off into the distance
and just looking somewhere
it's because I'm like "how can I try and stay alive right now?"
because I am in a lot of pain and I'm trying to just exist.
My partner is really good in noticing that.
And seeing that and he catches it instantly.
And he often is like "Are you okay? What do you need?"
And my first instinct is "I'm fine".
And he's like "No you're not."
And I'm like (exhaustipated) "I'm fine! I'm fine, just leave me alone it's okay."
And he's like "Girl? Like it's okay. I love you, I'm here to support you."
And I'm like (exhales)
I strive to be supported and loved all the time.
Like I want that, everyone wants that.
But then when it comes to me in that beautiful package
I'm instantly like "Stop it!"
"Get away from me, don't love me" (laughs)
It's something that is really real like
accepting help and accepting that is really difficult.
A: Well and asking too because I
K: Girl I don't! (laughs)
A: Like I do the same thing, I get very quiet and I keep it to myself
because um, I mean my family has always been very helpful
but at the same time I've always known
I'm on my own.
K: mhm
A: (chuckles) My boyfriend is going to laugh when he
watches this video because
he going to laugh becau- he's the sweetest
person I have ever met.
He has such a mean face,
everyone is intimated by him.
But he is the sweetest person and I feel
just like not worth of him a lot of the time.
But I'm very lucky and thankful he wants to be with me.
Because he...also he's so sweet but he's very tough love
with me.
He will pick up when I'm quiet and having an anxiety attack
but then other times he has said to me he's like
"I can't help you if you don't talk to me.
I'm not going to read your mind.
I can't read your mind."
K: I can't help you if you don't help yourself right now.
A: Yeah and sometimes that's a good, for me personally that's a good
like wake up call.
K: Yeah totally.
A: When he tells me that, uh
and then there's moments where I won't accept his help
I'll get very angry.
There's a part of me that will give in.
Because I trust him.
Uh we went to the hospital towards the end of 2016.
And I got an adrenaline shot in my leg.
And it messed with my walking so
I wanted to go back to my place
but he was very concerned about me and wanted me
to stay at his mom's house.
Until he got off of work to take care of me.
And I was adamant about not going to his mom's house
because I just wanted to be alone.
It was a good decision he, he got down on his knees
and was like "we're going to my mom's house
and you have no say in this."
And it was a good decision because I did need help while he was at work.
At the end of the day he will still respect my wishes
but this is a partnership and you have to give in sometimes with your partner
when they know it's best for you.
K: Yeah.
A: Um, but it's the asking that's hard.
And it's nice that when he knows I have trouble asking
he can help me pick up that slack.
K: Yeah because a lot of us like
we...a lot of us get in a
head space where we become really
self deprecating.
A: Yeah
K: And we don't notice it ourselves when we get there.
So it's really important to have a partner who sees that.
We can say we're disability advocates all the time.
But when it comes down to it, like we beat ourselves up.
And we'll say negative stuff about ourselves
in that moment because internalized ableism
is so real and that stuff is going to eat you alive.
And in those moments we treat ourselves like crap.
So to have a partner who's going to stand there
and say "No this is a point where you need to take care of yourself
and I'm seeing you not doing that
so we're doing it right now and this is how we're doing it."
There's a lot of times where I'll have
my partner look at me and say like
"Would you say these things to Annie?"
(laughs) Like Annie Elainey our friend.
Like "Would you say these things to Annie? Would you say these things to Andrea?"
And I'm like (grumbles) no.
A: Uh my boyfriend does this thing with me
when I'm self deprecating.
He'll ask "How is this benefiting you?"
K: (groans)
A: And it's a call out.
It's a call out that I need.
And then I get like,
all of a sudden the problem is gone when it's like not an acutal
problem, it's gone because then I look at him and I'm like
"I hate you" and he's like "Why?"
And I'm like "because you're correct."
K: I know!
A: And but it's great.
K: But it's true.
(light hearted music playing)
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