I was reading through many of your comments on the video I released last week about living

with dietary requirements and I realised-

Wow. People can be AWFUL!

- so many of you reported having family members who just say the most DREADFUL things. So

I’m going to make two videos: What NOT to say to your disabled relative and what you

SHOULD say to your disabled relative.

Make sure you’ve subscribed and once you’ve done that hit your notifications so you don’t

miss that video!

I’m posting the NOT first because (A) it’s always funnier and (B) I think it’s helpful

to clear the gumph away so we have space for what is good.

Obviously I’m young and disabled so this is from that point of view but I’m pretty

sure I’ll still find all of these things irritating when I’m older.

Although I’m saying ‘relative’ that could also be substituted for ‘friend’

and when I say ‘disabled’ I’m including mental illness and chronic illness. Because,

funnily enough, being inclusive is actually pretty great and the only thing I need to

restrict is-

A wide variety of foods…

Which brings us to:

“Are you sure you can’t eat that???”

99% positive that you don’t know my body better than my doctor does (always allowing

for a margin of professional error) and 100% positive you don’t know my body better than

I do!

Generally ‘are you sure?’ is an overwhelmingly irritating thing to ask. It’s okay to be

confused about something: medical things get really complex. I don’t expect any of my

cousins- or even my dad actually- to be able to name my full diagnosis-

- it’s Hereditary Neuropathy with Liability to Pressure Palsies and Mixed Connective Tissue

Disorder and associated Postural Tachycardia Syndrome!

So no, you don’t have to know everything. But you DO have to have the basic manners

to not question what you’re told.

Unless you also happen to actually BE a medical specialist in your relative’s condition.

In which case… you can still be polite about it.

Speaking of manners:

“You look too thin, it’s really sad.”

Dude...!

NO.

Shush your face.

Ill people are allowed to look ill and not have it brought up every five minutes. I went

through a stage of looking like I was dying because… I was. I was also aware of that.

But I still wanted to look pretty.

If someone comes to your family party looking unwell but they’ve also clearly put effort

into making their hair look good: [Clapping]The. only. Thing. You comment on. is. The. hair.

“You look fine to me”

And you look like an arsehole to me.

“Are you better yet?”

I’ve actually already made a video about this one. You can find it in the card up here…

or the link below.

It may seem like it’s a nice thing to say and you’re probably asking with the best

of intentions… but it can be quite an upsetting thing for someone to hear.

I mean ‘Yet’ is a very loaded word. Consider:

‘Have you unloaded the dishwasher yet?’ meaning both (A) I don’t think you have

and also (B) hurry it the hell up.

But ‘have you unloaded the dishwasher?’ purely means you don’t know the answer.

Try a simple ‘how are you feeling?’ instead.

Following on from that…

“Your mum told me you’re better now!”

Well that’s news to me!

Family gossip isn’t always accurate and if you’re getting your info from another

source it may just be because you’re too embarrassed or think it will be awkward to

talk to the actual person. Most people are actually quite happy to tell you how they’re

doing-

As long as you don’t ask them to recite a Wikipedia article you could have read yourself!

So get your news from the source with a simple ‘how are you doing lately?’

“Have you tried yoga?”

Have you tried taking a long walk off a short plank?

“Is it going to kill you?”

Um…

I suppose this question is okay if you’re in the middle of an intense conversation and

the person is already explaining things to you or venting but…

Not as an opener.

Also consider ‘is it progressive’ (meaning will the condition get worse over time) rather

than just jumping straight in with some death. Which is rather a confronting thing to be

asked! Either; ‘yes’, and you’ve just brought it up AGAIN which is obviously upsetting;

or ‘yes, slowly’, which isn’t actually less upsetting; or ‘no but now I feel like

you’re only going to consider my condition valid if it DOES kill me…’

“What does that actually even mean?”

Sharing genes or legal status with a person does not entitle you to turn them into your

own personal Google.

Google it!

“Are you sure it’s not from looking at screens too much?”

...I mean… it could also be the black cat that walked across my path yesterday so…

sure…

“Wow, you have something else as well?”

It may shock you to learn that almost 75% of disabled people have more than one impairment.

So… yes.

One of my mother’s favourite sayings is “people with cancer catch colds”, generally

in response to my complaining about getting yet another illness. When you body is out

of whack it’s… out of whack.

On that topic:

“At least you don’t have cancer!”

Also, creating a hierarchy of privilege and worthiness around disability is a horrific

thing to do.

[claps] Don’t Do That!

Thanks!

“Oh we all feel like that sometimes…”

Do we?!

Because, Aunty Susan, if you do, you should probably see my doctor…

It might seem like a nice thing to say and that you’re relating to the person but things

like ‘oh we all have our down days’ or ‘I have a really bad memory too’ are actually

really belittling and hurtful when someone has just opened themselves up in a very vulnerable

way to share that they have depression or a cognitive impairment.

We don’t ‘all get depressed sometimes’- it’s a clinical diagnosis and it should

be recognised as such.

I don’t feel supported or understood when I explain to someone that I have brain damage

so my short term memory doesn’t really work and they tell me ‘oh I get that too!’

No.

No. You don’t. No.

Come back to me when you’ve burst into tears standing in a mall because you can’t remember

which shop you just saw your wife walk into or where you’ve just been or what you’re

doing here or how to get out or which way is up and which way is down!

And when was the last time you even went to the loo

Minimising is not understanding.

“You were fine last Tuesday!”

Shockingly, Janet, the world has continued on since last Tuesday(!)

Not stuck in a time vortex as far as I’m aware.

“And this is a diagnosed thing, is it?”

No, I just thought it would be fun(!)

Firstly: a condition does not have to have a name to be real. People with health problems

feel bad both before AND after their diagnosis. That’s why they got diagnosed.

(also not everyone has access to a doctor or gets taken seriously by the first fifty

doctors they see also you’re being an arse...)

Cool!

Support your family member and the journey they are on. Simple.

“One drink won’t hurt!”

No, it literally will. That’s what a medical diet is.

“One slice of pizza won’t hurt!”

...see above.

“You don’t have to be so difficult.”

And you don’t have to be so mean!

People aren’t being ‘difficult’ when asking for access or stating a need. They’re

just telling you that it’s impossible for them to really be included or bring their

whole amazing self to the party unless there are certain things done and don’t you want

them to be bringing their best self?

It’s amazing how much disabled people can add to society when just given a chance!

I didn’t add to this list the obviously awful things relatives can say: ‘you’re

a burden’, ‘what are you even good for?’ and ‘you’ve ruined my life’ because…

I don’t think you’re really a human if you’re going around spouting that kind of

nonsense.

- Buckle up, the world isn’t about you.

I should probably also add on to the end of this video, because I know my mother will

bring it up later- these are not all from my family, who are mainly medical people and

thus know what they’re talking about…

Sorry mom.

I’m sure I’ve left a lot out so please put yours in the comments below: what ridiculous,

awful or just plain boneheaded things have your family members said and what would you

like them to say instead?

We’ll be discussing those awesome, positive things in my next video so make sure you’ve

turned on your notifications so you don’t miss it!

See you then!

[kiss]