Hello lovely people!
This is the second, kinder, part of ‘what to say to your disabled relative’. If you
would like to know what NOT to say to someone then you need to watch last Friday’s video,
which you’ll find linked in the description down below or in the card above.
If you like amusing and thoughtful yet educational videos with sass then subscribe and hit the
notification bell!
- always hit the notification bell. YouTube largely doesn’t tell you about new videos
unless you hit the notification bell. It’s apparently an improved update.
If you don’t know, hi, I’m Jessica. I have two genetic disabilities, because I won
the lottery of life, which then give me a chronic illness. I’ve been ‘unhealthy’
for my whole life but it got much worse in my teens so I’m coming from a young point
of view but I’m sure they’re still going to be things I want you to say to older me.
And although I’m saying ‘relative’ that could also be substituted for ‘friend’
or ‘coworker’ or ‘that random person you keep bumping into at bus stops’. And
obviously I’m including mental and learning disabilities along with physical ones AND
chronic illnesses because-
Inclusion is everything!
Before we get started with today’s video I’d just like to let you know that Monday’s
video will be a gay version of the ‘would you rather’ game, guest starring my gorgeous
wife Claudia, and you can leave your suggestions for questions on this picture which you’ll
find on our Instagram account! Link in the description...
(If you don’t have instagram I also posted it in the community tab. You’ll find that
on my channel main page)
Not only that but on Monday I’ll also be releasing this month’s new merch design:
‘Because: gay’! Available from Monday.
On with today’s video: we’ve talked out what you shouldn’t say to the people you
love, but what should you say?
Do you need me to say something to them?
Yes. Always. You might be worried about stepping on the disabled person’s toes, you might
be worried about speaking over them. Very valid concerns. Although, yes, those are things
you obviously shouldn’t do, it is perfectly fine to ask if you see a situation where a
disabled person isn’t being listened to or feels uncomfortable to voice their opinion.
It’s just a fact of life: ablebodied allies are more likely to be listened to.
A lot of different disabilities will also come with what’s known as ‘brain fog’-
that’s when you’re too tired or ill to think clearly. Plus there are those of us
with cognitive problems.
Both of these things might mean we can sometimes struggle to even
realise something is missing or that we have a need that isn’t being met. With your clear
head you might be able to immediately spot that there isn’t water in the meeting room
whilst I’m sat over here getting horser and horser but not realising why!
[slurps]
Anyone else with a Diet Coke obsession?
So please, ask if you can help and if we say yes then step in.
And the similar…
Do you need my help?
Whether it’s getting my wheelchair across gravel or lifting a heavy box: yes. Yes I
really do need help!
Please help.
Just ask first!
I’m an adult!
Actually, having said that, you should probably ask children if they need help before snatching
things out of their hands and doing it for them. Shockingly, I think... very young people
may be human too.
Let me know if you need to grab a nap in my guest room.
Ooooh… now you’re talking.
Yes!
She’s not being rude, she’s deaf. You need to get her attention before you talk
to her
This is something I wish people in my own
life said a lot more!
It would really cut down on protracted British ‘oops are you being rude? Oops, no, am I
being rude? Oops, was that rude? Oops, are we both rude?’
situations if the person
next to me could just say
Deaf. Lipreads. Try again.
-huh?
Again, you’re very welcome to speak for me if it cuts out hours of agro from my life.
Very welcome indeed!
You’re great just the way you are!
But like… actually mean it.
You probably do mean it, you just don’t realise how often you have to say it to someone
who is given daily messages by society at large that they’re a burden and a waste
of space.
You should probably say it daily.
Boost my ego!
[Uncomfortable laugh]
Say that to her again and I’ll hit you.
What? I’m the sweet, pacifist, disabled girl: I can’t threaten violence.
But you can.
I’m kidding! Please don’t actually hit anyone!
I'm sorry. I take it all back
You’re doing a great job
Thanks. It’s hard but… I’m trying.
You’re such an arsehole!
That took a turn!
But I don’t hate it…
Disabled people don’t want to be put in special, sacred ‘can do no wrong’ boxes-
- well, some of us do. And they’re the ones that definitely SHOULDN’T be in those boxes!
Just treat people with respect, regardless of what you perceive their ability to be,
and expect to be treated that way in return. If the person is literally incapable of behaving
in a way that society deems to be acceptable due to their mental or learning disability
then that is one thing… but you don’t get to be rude to everyone just because you
were born with six fingers on each hand.
Oh no no. She doesn’t mean to be an arsehole, what she actually meant was-
Oh. Yeah. That one’s on me…
Quite often I’ll misunderstand what someone has said and reply with something that, since
it’s completely out of context, comes off as rude or insensitive. But I have no idea!
So I just keep smiling through, completely confused as to why everyone is now giving
me a funny look… until an hour later when Claudia tells me what I said wrong!
I would actually prefer it if she stepped in and helped people to see I’m not rude…
I’m just deaf.
Unless I’m being rude. In which case: I’m just right!
[ding!]
What can you eat at the moment?
This is probably an easy and obvious one and maybe it only applies to me-
- and that might be because my dietary needs have changed a lot over the years...
But I really prefer when someone asks what I CAN eat, rather than what I CAN’T.
Positivity and love!
I’ll stick by you, we’ll work it out together.
Thank you. I really, really needed to hear that…
So, is today a good day or a bad day?
I find ‘how are you?’ or ‘how have you been?’ can be really overwhelming because
I have such a changeable condition. Are you asking about this minute, this day, this week,
this year?
This lifetime?
Because the answer is always: up and down.
Every damn second.
Oh.
Do you prefer ‘disabled person’ or ‘person with disabilities’?
Okay, so that’s a very specific, one-time question… but my point is: ask!
I personally use ‘disabled person’ because, hi, that’s what I am. But many other disabled
people don’t feel that way and prefer ‘person first language’
Which, if you need that explained- is a whole different video!
Let me know if you want me to make that video.
Again, my point is to make the person feel comfortable. If you’re not sure about language:
ask. Politely.
For example: “Are you deaf or hard of hearing?” can actually be quite a challenging question
for people who are loosing their hearing or have gone deaf later in life. It’s that
classic ‘oh my god, what AM I?’ Am I allowed...
...to be part of this group?
Type of moment.
Instead just try: “how would you like me to refer
to your hearing loss? Do you prefer I use the term ‘deaf’ or something else?”
Converse.
Like a human.
Honey do you need me to grab a chair for you?
Yes. Yes, always.
Look, if you want to just hold my hand and scream for a few hours, let’s do that.
I love you.
I’m always here for you
I love you.
Loneliness can be a huge challenge when you’re disabled. When surveyed half of disabled people
report feeling lonely. Which, considering 49% of non-disabled people say they have nothing
in common with disabled people… isn’t surprising.
Just let the person know you notice when they’re not around.
In summary: I guess most of these are obvious… or are they just obvious to me because I know
them…? I Thought the ‘What NOT to say’ video was obvious too but many of you report
your family saying many terrible things so…
Goodness.
Look, you can have a bad day too, you can make mistakes, but we’re not asking you
to be our heros: just be a friend, be family, be here for me.
You’ll probably feel helpless more days than you’ll feel on top of things but you’re
really not alone in that.
Disabled and chronically ill pals
Let me know what else you would like your family to say to you in the comments below,
don’t forget to ask your question on the Jessie and Claud Instagram post and come back
on Monday for a new video AND the new merch release!
See you then!
[kiss]