this is so funny i just i just stopped our previous video from yesterday sat back down
and now we're gonna film this video same outfit same position vlogmas this is what it takes to do
a video a day you just gotta film when you have time yes so today's video is like interesting
though yeah even though we're filming two in a row um we're using a question that i get asked
all the time when i do my talks for elementary schools which if you don't know is a part of
the work i do with laughing at my nightmare i talk to kids about being disabled being different and
why it's not a bad thing and those are free right those are free so if you're an elementary or
middle school teacher and you would like to bring me to your class virtually uh go to laughing at
my nightmare dot com and check that out anyway question is what does it feel like to be disabled?
thank you so much to butcherbox for sponsoring this video yeah thanks
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mom sent us a video of george opening his meat i've never seen his face light up this excitedly
he is the happiest person in the world right now yeah we got him some rib eyes a chuck roast a
couple of other things that we knew he would love and i think we nailed it i think it's gonna be like
three or four days till he's done with all of it this is gonna be every meal for him from now on
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thank you thanks all right so the question is what does it feel like to be disabled or like what does
it feel like to use a wheelchair what does it feel like to not be able to walk there's like
a bunch of variations but just in general what does it feel like to have a disability
yes so before we begin important caveat this is my perspective as someone that's
lived with a disability their entire life who's used a wheelchair their entire life
if you ask a hundred disabled people what does it feel like to be disabled you would get 100
different answers yeah this is my perspective not an answer that represents the entire community
yeah although i think the basic point that we're going to make is one that most would agree with
yeah are you kidding dude chloe just burped in my face
come on in your crate so yeah this is just shane's perspective as someone who has used a wheelchair
since he was two i'm just giving a little background info and every time i think about that
a little two-year-old baby driving a full electric wheelchair i have like nightmares for my parents
you know and didn't your daycare teacher say that your favorite activity was to go
full speed into the walls yep i just like to hit into stuff so this is the perspective that
you're getting today but uh shane's disease is also progressive or at least it was until he
was like 25 and began you know treatments so um another that's another thing to keep in mind i
think everybody's perspective is different but shane's disability while he's had it his whole
life is a lot different now than it was when he was 5 or 10 or 15. yeah so when kids ask me
any variation of what's it like to be disabled here's the answer that i give them and then we'll
go a little bit deeper because i obviously don't tell the five-year-olds the whole picture um what
i say to them is what if i asked you what does it feel like to walk or what does it feel like to not
be disabled you would probably say um let's see i wake up and i go to the bathroom and then i go
downstairs and i eat breakfast and then i go to school and i play with my friends and i do work
it's hard to describe what it feels like to be who we are you know you say the things that you do
and it's the same way for me being disabled doesn't feel like anything i'm not in pain
um and that's you know another uh it's my perspective i don't live with pain
um i can't feel the fact that my legs don't really move um i just go about my day i get lifted into
my wheelchair i brush my teeth i drink my coffee i work on my computer i do everything that you do
walking but i do it sitting down so it's not really like something that i'm mentally aware of
in my day-to-day life yeah i think the idea that you're just not really mentally aware of it is
is the biggest thing and i think it also goes for like shane's disability in our relationship
you know people will be like what's it like to be with a disabled person like it's the same thing we
don't think about it i don't think about it i mean it's obviously it's not like shane's disability
is not a part of our relationship you know people will be like she saw past his disability
and that's not it at all no i mean like shane is obviously disabled and his disability
is a big part of our relationship but it's such a big part that like we don't think about it
you know it's like saying like what does it feel like to be with hannah because she's tall ah like
obviously i can reach things on higher shelves you know obviously i you know have to look down
to talk to me obviously yeah i'm like i have to oh my god she came out of her crate chloe we had
her in her crate for the filming and she's now out somehow well i leave it i leave it unzipped
in case of a fire it's just she tends to stay in oh my god what a bad dog i think she just went back in
she came out here just so you know she's about to be like hey idiots just you know i can get
out but i'm going to go back in like what is it like to look up at her when she's sitting in
front of you and talking to you right like it's things that you don't even notice yeah you know
and i don't and i'm not aware i mean i'm aware but i'm not thinking about the fact that i'm sitting
while i'm moving from the living room to the kitchen yeah it's just the way i do things the
way i've been doing them forever i use wheels to move instead of my feet um so that is part of it
that's what i tell the kids like being disabled is you know different in that i use
a wheelchair but it's not like a big negative thing that i'm thinking about or like sad about
with that being said there are systemic issues that i face as a disabled person that definitely
color my experience so those are part of it as well because they're things that i need to be
aware of at different points in my life i think the moments that shane is most frustrated
about like using a wheelchair is when we're out in public and there are buildings
that are not accessible um or when he can't just easily get onto the airplane because they won't
allow his wheelchair like he is when we're home he doesn't think about it because everything is
accessible to him i mean not our bathroom not our sink but like you know his normal daily
routine isn't interrupted by inaccessibility so i think the moments when his disability comes
to the forefront in our relationship and just in his life is when there is inaccessibility you know
yeah and not just environmental but like when i have health care issues like when i have to fight
with my insurance that is when my disability is at like the forefront of my mind and i'm mad not that
i'm disabled but that the care systems that are in place in our country are so difficult to navigate
that i have to make a thousand phone calls yeah um so it's not like i'm like oh man i'm disabled
now i'm annoyed like i'm like oh insurance sucks yeah and when we're out in public and there's an
inaccessible building you're not like i wish i wasn't disabled you're like why don't they put
a ramp in exactly you know it's never it's never like shane internalizes that another time that
shane's disability comes to the forefront is when strangers come up to us and you know pray over him
or ask me if he wants the children's menu or you know if my son is having a nice day at the park
you know various various things that they might say or if they comment on our youtube oh yeah
like oh he's the ugliest person i've ever seen why would she date someone so disabled yeah it's that
social misunderstanding and stigma that surrounds disability that reminds me like oh people do
look at me very differently and that can be frustrating but again i don't think that that's
a problem with me and it's their misunderstanding and ignorance about disability so you know that's
a lot to explain to children but so yeah i think you know similar questions might be like what does
it feel like to be named hannah or what does it feel like to be 25 or like when people say what
does it feel like to be married yeah you know it's things that are really difficult you know i don't
know what it feels like to be named hannah like that's just my name just what you've always been yeah
normal you know it's it's that kind of a thing where you're just like i i don't know
yeah and so i you know explaining it to children is a little difficult that's why i simplify it for
them because disability obviously is a huge part of my identity like it affects so much in my life
and in the world with inaccessibility and the stigma that i face because of my disability but
in my day-to-day life i don't like feel physically my disability does that make sense yeah i i i know
i'm disabled and i i i'm proud of that but when we have the adaptations in place from my daily
life that i'm not like ah disability there it is i feel it it's not like a tingle you know or
like a thing that you know i i get a feeling in my stomach where i'm like there's a disability
again that's my that's just my perspective not something that i am very consciously aware of
until i'm facing a barrier like inaccessibility or an insurance rep telling me that the procedure
that i need is not improved something like that and i think when people say like what does it
feel like to not be able to move your arms you know it's just like oh i can move my arms
it's just you know it's not like you're straining to like reach the light switch
you know like you're just it's like what does it feel like to not be able to fly
you know like it's not you don't try to fly you know like you're not constantly like oh i'm
trying to stand you know it's just like you live within your own body
and it's just it's hard to explain right like like me lifted my arm to my max height
right here probably feels like this like my hand is new like yeah and i'm not like same feeling
yeah i'm not this isn't tiring yeah it's not tiring i don't i'm not hurting myself
right now but you're not also not like oh i'm like trying to go higher you're not expecting to go
higher if so it's yeah i think kids are often like what does it feel like to not be able to
stand up and it's just like you know if i tried i would crumple into a little ball so i don't that's
not what i tell them i promise my presentations are very appropriate and age appropriate i don't
tell the children that i crumple into a ball every time i try to walk i try everyday kids
it's just not working all right that's the end yeah hopefully that makes sense it's definitely
we're talking about like a very nebulous subject so it's hard to to pin down but
hopefully that answers some questions yeah i think most simply put what does it feel like to be you
if you can figure out that that's what it feels like to be me
it's just i sit down instead of stand most of the time thank you everyone thank you everyone bye