Transcript: Why the hashtag #ThingsDisabledPeopleKnow went viral

This is a full transcript of Why the hashtag #ThingsDisabledPeopleKnow went viral as first broadcast on 25 January 2019 with Damon Rose, Emma Tracey and Niamh Hughes

JINGLE - BBC Sounds: music, radio, podcasts.

DAMON- This is Ouch, the disability talk podcast from the BBC. I'm Damon Rose and with me is Emma Tracey.

EMMA - Hello.

DAMON- And Niamh Hughes.

NIAMH - Hello.

DAMON- Hello. And we are here today to talk about a hashtag that has been kicking around the internet. Who's going to tell me what the hashtag is?

EMMA - ThingsDisabledPeopleKnow.

DAMON - ThingsDisabledPeopleKnow. And of course hashtags are becoming ever more interesting and powerful. What we've seen can happen, a whole mindset can congregate and amass around a particular hashtag. And this one is bringing out all sorts of experiences that disabled people often don't talk about. Niamh, you've got whole list of some of the responses with this hashtag on Twitter. Shall we just go through a few of them what people have been saying around the world?

NIAMH - So, this tweet is from somebody called Elizabeth M and she says: we can either be the poor thing or the inspiration in society's eyes. No in between, #ThingsDisabledPeopleKnow. I get called poor thing quite a lot, 'oh sorry, ah that's a shame'.

DAMON - Do you?

NIAMH - Yeah, that happens quite a lot. I just try and explain what I have, hemiplegia, and a lot of the time I tend to attribute it to cerebral palsy in the sense that it's quite similar, in that I was born with a little bit of brain damage, so it's fairly similar just only affecting one side of my body. But I do get that, 'oh I'm sorry, oh I'm really sorry for your…' almost like they're about to say, 'sorry for your loss'. That's what I'm almost predicting. It's like predictive text in my brain, I'm just almost pre-empting the conversation. It's like, what the hell do you think that I have lost, or what do you think that I am going through at the moment to feel sorry for me? I'm fine.

DAMON- I was going to say, so ThingsDisabledPeopleKnow, is it a loss, what do you know?

NIAMH - Yeah kind of. It's just making this massive assumption that I'm somehow unable to participate and I'm ultimately isolated. I'm not. I have a great life and I'm not sorry for my disability. I know we've talked about this before on other podcasts but if I was given the choice I probably wouldn't hand it back, if you know what I mean.

DAMON- That's quite interesting. For many, many years I used to say, I don't want my sight back. But I kind of think I would now. It would be really particularly useful at this point in my life; I've got kids. But I would have to schedule it in. I've got lots of things to do in the meantime and lots of things to achieve and work and things. Maybe May, put it in in May. And a lot of people are surprised when I say things like that, they think I'm being a bit contrary or something because they would expect that I would just get in a taxi and go down a hospital right now if something like that was available. I guess I'm just not hanging out for it in the same way people assume.

Emma, what hashtags, you've been looking at them, what's your favourite one?

EMMA - I started looking at this as quite a fun thread, and there are some quite interesting things on it that you go, oh yeah absolutely. But the one I read this morning and the one that came through this morning and the one that I'm going to read out is, again, quite a sad one. It's from Merlin's Laugh: no matter how great your family or support system is, no matter how hard you try, there are always times when you feel like a burden.

I mean, that is so negative, but it's true, it's true. You were talking about always saying that you wouldn't get your sight back and now saying actually maybe I would, and I think that kind of follows on, you were saying it was because of having the kids and stuff like that. I think I feel that tweet more now that I have people that I'm responsible for that I need to be very able to manage life for me and for them. I think I need to ask for a lot more help and accept a lot more help. And then as a result of that sometimes I do feel like a bit of a burden for accepting so much support, even though I know in my heart of hearts I have an amazing support system and an amazing family, but sometimes you cannot help feeling like a burden. And that's true. I'm very happy. As Niamh says, I have a great life and I'm very happy, but that is just the truth, it's just the truth of it.

DAMON- That's interesting. I got into trouble last year, I don't know if you remember, earlier last year when I used the word burden in a tweet. I kind of assumed that all disabled people did occasionally feel like a burden, but it seems I was wrong because we got lots and lots of complaints from people who disagreed and were surprised to see this word and were surprised to see that I was putting this message out there.

So, I guess when we see this hashtag, #ThingsDisabledPeopleKnow, it's not necessarily all disabled people.

EMMA - No, because funnily enough we're not all the same.

DAMON- What do you know! As Robyn and Jamie on the 1800 Seconds podcast say:

NIAMH - There's a lovely plug there, Damon.

EMMA - Yeah, well done.

DAMON- Thank you. When you've met one disabled person you've met one disabled person. Thank you.

EMMA - Absolutely.

NIAMH - Round of applause.

DAMON- Let's hear now from Imani Barbarin. She is Crutches & Spice, the person behind the hashtag.

IMANI - I started #ThingsDisabledPeopleKnow after I wrote a post about Bryan Cranston's role in Upside. A lot of the feedback that I got after I requested more disabled representation be played by disabled people was that disabled people really had nothing to offer to productions or Hollywood or just our own stories even. And so I wanted to show the nuance that disabled people carried as well as the knowledge that a lived experience would give you as a disabled person. And I was really overwhelmed by the response. I couldn't really believe just how many people were willing to share their stories under the tag or willing to say what bothered them about representation or about what able-bodied people thought about disabled people.

I think that disabled people deserve to be the narrators of our own stories. And this really goes to show that there's so much more vastness and diversity in stories than Hollywood is willing to produce. And so I really hope that people feel moved to kind of move out of the way and let disabled people say what they have to say.

DAMON- That's very interesting.

NIAMH - It's a complicated one obviously, when you attribute it to Hollywood. Because I was watching a clip from Trevor Noah and he was calling about the responses to the casting. He's an actor and a wheelchair user and he said, 'the thing is, we as wheelchair users as actors can't play able-bodied parts, yet the able-bodied actors can play disabled parts. And if you can understand that disparity and the fact that we have limited roles available to us then you'll understand why there is such uproar amongst disabled actors themselves'.

But I've always said that when we talk about diversity, which unfortunately has become a bit of a buzzword, we tend to talk a lot about ethnicity, race, sexuality, yet disability gets left by the wayside massively. And that's just almost perpetuating or feeding into that by the casting. And I think bringing this hashtag to the fore has tried to start a conversation about the lack of visibility of disabled people, whether that be in the film industry and whether that is indicative of other industries.

EMMA - One of the things I love about disabled hashtags when they take off is the camaraderie between disabled people all over the world and people with all sorts of different impairments and from all different parts of life and ages and demographics, all saying, yes I have that as well and I get that. Sometimes it's hard to see how the disability community can be cohesive nowadays with the way the world is, but when you see that and when you see all the disabled people coming together it puts a song in my heart, it makes me happy. I like to see people have a tribe and a support system and the people who get it and who know what's happening and who get you to some extent, or who get that part of you.

NIAMH - It's a community.

EMMA - Yeah, it's a community. Well, I hope so. When I see that I see that it can be and should be a community because there are commonalities. Yeah, I love it. I love to see that interaction.

DAMON- And Bryan Cranston is playing a disabled person in the Upside, that film we should just say that if you haven't caught up with that story. He said that he felt he should be able to play a disabled person because after all it's acting, he's an actor, why shouldn't he be able to play a disabled person. But I found it quite interesting because in the programme that he most came to fame from - help me out, what's it called?

EMMA - Breaking Bad.

DAMON- Breaking Bad. Sorry. How did I forget that?

NIAMH - My dad calls it Breaking Wind.

DAMON- He had a son who was disabled in the programme and played by a disabled actor.

EMMA - Yeah.

DAMON- You'd have thought he… I was disappointed. I know I'm not supposed to have opinions, but I was a weeny bit disappointed.

EMMA - I think actors just cannot pass up the parts that are disabled because they get Oscars, as we know, and they just can't pass them up. They think this is my chance of an award.

DAMON- Oh my god.

NIAMH - It's the Daniel Day-Lewis effect.

DAMON- Yeah, just being able to go [makes groaning noises] and throw yourself across a room is really exciting to actors.

EMMA - They think that they can really nail it, they can really give it a good shot, they can really method act and get into that role.

DAMON- Of course I started thinking down my own special little road of things that disabled people know. And the one thing that I know as a guide dog owner that people come up to me in the tube so that they can have a fart.

EMMA - [Gasps]

DAMON- Because I've got a guide dog at my feet and they think oh, I could sneak a quick one here because there's a dog around and people will think it's the dog. And quite often - Emma, you're a guide dog owner as well or were.

EMMA - Have been yeah.

DAMON- I don't know if you get this. Have you ever noticed this phenomenon: people come up to you and fart because you've got a dog?

EMMA - No, but I can totally see how that would happen. My things disabled people know is: if you're visibly disabled and entirely ignore the ticket collector on a train they are 99.9% likely to ignore you right back.

DAMON- Right.

EMMA - I always have a ticket. I do not flout the rules. But it's on my phone and I'm usually watching Netflix or something and I'd have to turn of the Netflix, I'd have to turn off my voiceover, put on my screen, hand him the phone, try and find the bit of the ticket that he needs. So, I just sort of ignore him or her and they usually walk by.

DAMON- #CoolEnoughToWatchNetflixUsDisabledPeople. Niamh, the MeToo movement, the head of the EHRC, that's the rights commission for diversity in the UK, the other week said that it's time disabled people had their own MeToo movement, because he had been surprised at how badly disabled people are treated. Is this our MeToo movement this hashtag?

NIAMH - I think it's always got the potential to be. It's been going on now since the weekend and there are still tweets and there are still people contributing to the conversation. I'd like to think that even this podcast itself could help propel that hashtag. I'm not much of a Twitter user but I'm really, really tempted, I'm so tempted because, like Emma said, some of them are seriously emotional. And it's like banding together for this community to just say, I get that too. The amount of times I've wanted to say, ah me too, I get this all the time. Disability is a massive spectrum, people's experiences differ wildly, but there is a universality to it.

One of the tweets that really resonated, even though it's from a deaf perspective, is when you say I never think of you as deaf, I'm trying not to respond, that's because you don't notice all the work I put in to ensure my deafness doesn't get in the way of our communication. And that was from Jackie Leach-Scully #ThingsDisabledPeopleKnow. And that can be so easily attributed to any disabled person: the amount of work you do just to get on with life it just goes completely unnoticed. So, I'd like to think that this would be a MeToo moment for sure. But it's so unpredictable, isn't it?

DAMON- And Emma, could disabled people ever congregate around one hashtag and get together as a community? Are they similar enough?

EMMA - Yeah, I think based on this, this as Niamh says has been a good platform and we can go forward from here and we can find some sort of a disabled MeToo hashtag that isn't DisabledMeToo because that's a bit clunky and it's not quite right. But we can find something and we can have a similar uprising in the future I think. It's been a while since I've seen this community in action and I feel quite heartened by it.

DAMON - Gosh you rabble rousers; you should be in parliament right now.

NIAMH - Vive la Revolution!

DAMON- Well, thanks for listening. This has been Ouch. You can subscribe to us on the brand new BBC Sounds app - not so new anymore actually, is it. Or you could shout at your smart speaker: play Ouch disability talk from the BBC. It's a bit of a mouthful but it's easy and it will happen just there in your kitchen.

NIAMH - Is that what you do, Damon?

DAMON- Whenever I want to hear my voice or your work or anything that's exactly what I do, yeah.

NIAMH - You don't need prompting.

DAMON- No. I need more Ouch when I get home in the evenings.