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  • Hello lovely people!

  • 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 youve subscribed and once youve 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 sayingrelativethat could also be substituted forfriend

  • and when I saydisabled’ 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!

  • Generallyare 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 youre told.

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

  • In which caseyou 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 theyve 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 youre probably asking with the best

  • of intentionsbut it can be quite an upsetting thing for someone to hear.

  • I meanYetis 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.

  • Buthave you unloaded the dishwasher?’ purely means you don’t know the answer.

  • Try a simplehow are you feeling?’ instead.

  • Following on from that

  • Your mum told me youre better now!”

  • Well that’s news to me!

  • Family gossip isn’t always accurate and if youre getting your info from another

  • source it may just be because youre too embarrassed or think it will be awkward to

  • talk to the actual person. Most people are actually quite happy to tell you how theyre

  • 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 simplehow 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 youre in the middle of an intense conversation and

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

  • Not as an opener.

  • Also consideris 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 youve just brought it up AGAIN which is obviously upsetting;

  • oryes, slowly’, which isn’t actually less upsetting; orno but now I feel like

  • youre 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 meanit 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.

  • Soyes.

  • One of my mother’s favourite sayings ispeople 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 youre relating to the person but things

  • likeoh we all have our down daysor ‘I have a really bad memory tooare 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 meoh I get that too!’

  • No.

  • No. You don’t. No.

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

  • which shop you just saw your wife walk into or where youve just been or what youre

  • 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 youre 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 beingdifficultwhen asking for access or stating a need. Theyre

  • 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: ‘youre

  • a burden’, ‘what are you even good for?’ andyouve ruined my lifebecause

  • I don’t think youre really a human if youre 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 theyre 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?

  • Well be discussing those awesome, positive things in my next video so make sure youve

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

  • See you then!

  • [kiss]

Hello lovely people!

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