1 00:00:00,000 --> 00:00:05,840 Hi, my name is Jordan. I am a special education teacher from the UK. I share my passion for 2 00:00:05,840 --> 00:00:11,040 everything communication, sensory regulation and fun lesson ideas for my classroom of disabled 3 00:00:11,040 --> 00:00:17,120 pupils aged 4 to 11. Each week I am joined by experts in the field answering your questions 4 00:00:17,120 --> 00:00:22,800 and sharing our knowledge and experience working alongside our beautiful young people. Let's get started. 5 00:00:22,800 --> 00:00:35,040 Hello everybody, my name is Jordan and today I am going to be joined by Joanna Grace from Sensory Projects. 6 00:00:35,040 --> 00:00:46,640 Hello Joanna. Thanks for having me. I think I last saw you in 2010, maybe 2011. Wow, oh gosh, 7 00:00:46,640 --> 00:00:53,920 I feel old, doesn't it? Yeah, it was in London and you were doing a Tory show with Flo Longhorn 8 00:00:53,920 --> 00:01:02,720 about sensory stories. Yes, yeah, Flo's forums, yeah they were ace. Yeah, fantastic and do you know 9 00:01:02,720 --> 00:01:10,240 what, I was so blown away, I mean just blown away by the two of you anyway, but actually it was when 10 00:01:10,240 --> 00:01:14,560 and I've always remembered this and I always use this for when I'm thinking about making stories 11 00:01:14,560 --> 00:01:21,840 and creating stories which I do a lot. You had one about a tattoo and you used a tattoo gun, 12 00:01:25,440 --> 00:01:34,240 with your people and I just loved that because before that I'd always used baby stories and 13 00:01:34,240 --> 00:01:43,280 fluffy soft things and nursery rhymes and that's fine for some, but for me as a new teacher, 14 00:01:43,280 --> 00:01:49,040 as a new SEM teacher, it was a light bulb moment like, well yeah duh, of course you can do that. 15 00:01:51,200 --> 00:01:57,120 It was one, I was trying to get an adult care audience interested in sharing sensory stories 16 00:01:57,120 --> 00:02:02,320 of the people they support and if you sort of go in to adult care and say you can tell them stories, 17 00:02:02,320 --> 00:02:07,760 they're like yeah it's a bit big and I was trying to think how can I make a sensory connection 18 00:02:07,760 --> 00:02:12,240 to the staff who support in adult care and tattoo guns is a really good way of doing it because a 19 00:02:12,240 --> 00:02:17,440 lot of people have tattoos and they're like yeah that was a sensory experience, I'm there and my 20 00:02:17,440 --> 00:02:23,920 friendly tattooist adapted, that gun has tattooed me and he adapted the gun so that I can use it 21 00:02:23,920 --> 00:02:28,720 with a, I think I can put a biro in it or something like that so I can write on your skin but all the, 22 00:02:28,720 --> 00:02:35,040 apart from the piercing your skin with the needle aspect, the butt and all of that is the real 23 00:02:35,040 --> 00:02:40,560 sensation, it's a good one, I like the tattoo sensory story. Pete Wells has got, we're going on 24 00:02:40,560 --> 00:02:49,760 a pub crawl as a sensory story. Why not? You don't have to go on a bear hunt every year for life, 25 00:02:49,760 --> 00:02:55,040 not compulsory. You don't, you absolutely don't and then that brings me on to your beautiful 26 00:02:55,920 --> 00:03:02,880 story, sensory stories as well that you have created that again are so accessible for all, 27 00:03:02,880 --> 00:03:10,080 they're finally not yeah, infanticising actually at all and that's why I love them. It was always 28 00:03:10,080 --> 00:03:16,080 one of my worries when I was sharing stories with people who carry, in the UK they carry the label 29 00:03:16,080 --> 00:03:22,240 for animals to learning disabilities, you don't know how much somebody's understanding and I would 30 00:03:22,240 --> 00:03:28,960 hate to be patronising you if you are understanding but also I would hate to be offering you something 31 00:03:28,960 --> 00:03:35,280 that you can't connect with unless you have an understanding and if you start at a sensory level 32 00:03:35,280 --> 00:03:43,120 and work up from there, I hope that you can genuinely include everybody. So lots of stories, 33 00:03:44,000 --> 00:03:48,960 you know like the way pantomimes are written for the children and the adults, 34 00:03:48,960 --> 00:03:56,000 right, a double mix, like there's a story called Puddle which is about somebody who dives into a 35 00:03:56,000 --> 00:04:00,560 puddle and then has an adventure at sea and at the end of that story there's a woman waiting 36 00:04:00,560 --> 00:04:06,000 on the pavement for you and if you're a child reading that story that's your mum waiting on 37 00:04:06,000 --> 00:04:10,240 the pavement but if you're a teenager it could be your girlfriend or it could be a love interest 38 00:04:10,240 --> 00:04:14,560 because there are different ways of accessing the stories, I'm hoping, I hope that they're good for 39 00:04:14,560 --> 00:04:20,880 everybody but my stories all have a particular tone, I'm interested in factual narratives so I've 40 00:04:20,880 --> 00:04:27,440 got like science-based ones or history-based ones and then other sensory story authors so like I 41 00:04:27,440 --> 00:04:32,720 mentioned Pete Wells, Pete Wells' stories have a very particular tone, much more anarchic than mine 42 00:04:32,720 --> 00:04:38,960 and Vicky Nabin writes in Rhyming Couplets which is about, I don't know how she's called, but yeah 43 00:04:38,960 --> 00:04:46,000 there's lots of different ones out there now. If I think if you met me, what's that, 14 years ago? 44 00:04:46,000 --> 00:04:51,840 Yeah so originally there was just five stories on the sensory projects and we're over 30 now. 45 00:04:51,840 --> 00:05:01,600 Amazing, amazing. So what do you think, what do you feel makes a good sensory story? 46 00:05:02,960 --> 00:05:13,120 Two things, the most important thing is the sensory invitation because I see a lot of stories 47 00:05:13,120 --> 00:05:20,000 where people have just gathered things from around the room like a cuddly toy, a water spray bottle 48 00:05:20,000 --> 00:05:23,920 and obviously being sprayed with water is an interesting sensory experience but it gets done 49 00:05:23,920 --> 00:05:28,400 a lot so I don't know how interesting it is if it's something that happens to you on a daily basis, 50 00:05:28,400 --> 00:05:32,800 you're like if you attend a mainstream school you can go through your whole school career without 51 00:05:32,800 --> 00:05:37,680 a teacher squashing you in the face with water but if you go to a special school it happens all the time. 52 00:05:40,800 --> 00:05:47,040 You want something that's really really good sensory and so I always imagine, I don't know 53 00:05:47,040 --> 00:05:52,400 if you can do this, if you imagine like your brain and your senses as little characters, 54 00:05:52,400 --> 00:05:59,360 if you took the brain away and just left the eyes, would the eyes be interested in looking at this 55 00:05:59,360 --> 00:06:04,960 thing? You know it's the reason that you're looking at it is because you're curious or because you 56 00:06:04,960 --> 00:06:10,560 know that's the main character of the story. If it's coming from an intellectual start point 57 00:06:10,560 --> 00:06:15,600 then I haven't got complete sensory so I want something that draws the attention of a sensory 58 00:06:15,600 --> 00:06:22,080 system alone or fills the whole sensory system so quite often I'm holding up coloured sheets of 59 00:06:22,080 --> 00:06:26,960 cellophane because when you look through cellophane everything that you see changes so it's a massive 60 00:06:26,960 --> 00:06:31,840 visual experience you don't need to understand it so you want really good sensory and then you want 61 00:06:31,840 --> 00:06:39,440 concise text. So the rule of thumb is eight, ten sentences for a sensory story so quite often people 62 00:06:39,440 --> 00:06:45,040 adapt children's books like you were saying but actually there's a lot of text in your average 63 00:06:45,040 --> 00:06:52,400 children's book so that it's like a kind of high-Q art form to convey a story in just a few sentences 64 00:06:54,400 --> 00:06:57,360 together those are my two good ingredients to a really great sense. 65 00:06:57,360 --> 00:07:02,080 I love that and that is actually something I am yeah both of those things are things that I am 66 00:07:02,080 --> 00:07:07,440 incredibly guilty of actually and you saying that makes it just makes so much sense because 67 00:07:08,000 --> 00:07:14,960 it has to so often we forget about the sense of smell or like we're doing sounds and visual 68 00:07:14,960 --> 00:07:21,920 or textures but what about the sense of smell? So there's two things there so the concise text 69 00:07:21,920 --> 00:07:29,200 the stuff that I say I'm not I don't just um it's not coming out of nowhere so I'm pulling from a 70 00:07:29,200 --> 00:07:36,960 different research the concise text stuff there's loads of research that shows that we all take more 71 00:07:36,960 --> 00:07:42,880 information when less is said it's why our politicians speak in soundbites we understand 72 00:07:42,880 --> 00:07:46,960 more when people say less and then there's a whole load of research done on teachers 73 00:07:47,600 --> 00:07:54,000 where they go teachers talk too much they just talk too much so the concise text has value for 74 00:07:54,000 --> 00:07:59,280 people who have full intellectual capacity but also if you're somebody who has very little 75 00:07:59,280 --> 00:08:04,640 intellectual capacity for whom the sensory aspect is going to be more valuable that text that comes 76 00:08:04,640 --> 00:08:09,440 before the sensory aspect is the thing that tells you something's going to happen that you hear a 77 00:08:09,440 --> 00:08:16,400 particular set of noises and then somebody offers you a smell if I just offered you the smell you 78 00:08:16,400 --> 00:08:23,520 don't have chance to orientate the sensory systems to that and actually I work with people who that 79 00:08:23,520 --> 00:08:30,080 orientation of their senses is a thing that they have to properly do like obviously we're all doing 80 00:08:30,080 --> 00:08:37,440 it all the time but like I know somebody who can see and they can hear and they can feel but they 81 00:08:37,440 --> 00:08:44,880 can't do them all at once yes okay so if they know if I make a noise that is my sentence and that 82 00:08:44,880 --> 00:08:48,720 noise lets them know that what's going to be happening next is something that they're going 83 00:08:48,720 --> 00:08:54,400 to be looking at they have chance to kind of go okay I need to get my eyes up and ready and then 84 00:08:54,400 --> 00:08:59,600 they get more at it so the concise text is really powerful for the people who maybe aren't understanding 85 00:08:59,600 --> 00:09:04,800 it at all and it's really powerful for the people who are understanding and then you mentioned 86 00:09:04,800 --> 00:09:13,920 smell which is like a um it smells one of I so I run to generally run to seven senses on the 87 00:09:13,920 --> 00:09:19,360 sensory projects although once you start dealing in subconscious senses it is like gateway drugs 88 00:09:19,360 --> 00:09:26,640 and you end up sliding into them all so I'm up to nine now but I try and keep it to seven but smell 89 00:09:26,640 --> 00:09:32,160 is a really unusual one because it's the only sensory system processed by the limbic brain 90 00:09:32,160 --> 00:09:37,600 which is your feeling brain okay all the other senses are processed by your thalamus which is 91 00:09:37,600 --> 00:09:42,640 your thinking brain and so you can kind of you can you can feel it in the way that you think 92 00:09:42,640 --> 00:09:48,080 about things like if you think about uh like a famous painting like edvard munch's the scream 93 00:09:48,080 --> 00:09:55,200 or van goff's early night or jerry halliwell's union drag yes you can see it in your it's not 94 00:09:55,200 --> 00:10:00,880 like you're hallucinating it but you can see it in your mind's eye you can get stuck in your head 95 00:10:00,880 --> 00:10:05,920 like you can think songs if i was to hum a few bars of baby shark when everybody's done having 96 00:10:05,920 --> 00:10:17,280 baby but you can't think smell no you feel and so when you ask people you're asking emotional 97 00:10:17,280 --> 00:10:23,200 labor of them and it's a big one so you want to go really cautiously on this 98 00:10:23,200 --> 00:10:32,880 um and it's so true isn't it because it can be really emotive smell uh sometimes you won't have 99 00:10:32,880 --> 00:10:36,880 had a food for ages and you've forgotten about it and actually you'll have it and all of a sudden 100 00:10:36,880 --> 00:10:40,400 it will take you straight back to nursery or take you straight back to your grandma's house or 101 00:10:40,400 --> 00:10:45,760 whatever it is people keep jumpers and cushions from loved ones that have passed don't they and 102 00:10:45,760 --> 00:10:51,280 i feel like it's incredibly emotive and sentimental actually is that sense of smell isn't it yeah 103 00:10:51,280 --> 00:10:57,520 sometimes if you're working with people who are already stressed or who are overwhelmed by stuff 104 00:10:57,520 --> 00:11:05,920 then adding smells into that is a big ask you go to the court yourself i'd go like one smell in an 105 00:11:05,920 --> 00:11:11,760 hour and i'd be if i was brave enough i'd be asking staff who wear strong perfumes to wash them off 106 00:11:11,760 --> 00:11:16,960 but i'm not brave enough well actually i have had that i have had um students that haven't wanted 107 00:11:16,960 --> 00:11:21,600 to work with certain teaching assistants and when it quite came down to it was because of their perfume 108 00:11:22,240 --> 00:11:27,760 yeah yeah yeah yeah a lot a few times yeah so you mentioned seven i think most people say 109 00:11:27,760 --> 00:11:36,800 but there's five senses yeah famous five conscious senses um and actually hidden in those are a lot 110 00:11:36,800 --> 00:11:43,600 of the subconscious so like we have a sense of temperature and as tactile sense and we cluster 111 00:11:43,600 --> 00:11:49,840 them all together as touch but it's possible to be able to feel texture but not be able to understand 112 00:11:49,840 --> 00:11:53,840 temperature it's possible to be able to feel temperature and not understand texture so it's 113 00:11:53,840 --> 00:11:58,800 a bit like deciding how many constellations there are in the sky it just depends how we group these 114 00:11:58,800 --> 00:12:04,960 neurons but there are 33 sets of neurons that control your senses so arguably you've got 115 00:12:04,960 --> 00:12:11,280 33 sensory systems but that would get a bit much because in a sensory story you only get eight to 116 00:12:11,280 --> 00:12:20,400 10 sentences so seven is manageable eight nine is getting a bit too ambitious really um but my seven 117 00:12:20,400 --> 00:12:26,080 i do the famous five and then quite like often you're working with somebody who is missing one of the 118 00:12:26,080 --> 00:12:31,440 sensory systems or can't eat and you lose a few so it's worth having a couple of backups i use 119 00:12:31,440 --> 00:12:37,680 proprioception because your awareness of where your body is in space and it's a weird one to think 120 00:12:37,680 --> 00:12:45,280 about but most people have had an experience of not having proprioception just as they're waking 121 00:12:45,280 --> 00:12:51,280 up or falling asleep and they get that sensation of falling do you ever have that yes there you go 122 00:12:52,560 --> 00:12:57,200 and what's happening is your proprioceptive sense is falling asleep slightly before you 123 00:12:57,200 --> 00:13:03,360 or waking up slightly after you and you just have a moment where you don't have an awareness of where 124 00:13:03,360 --> 00:13:09,680 your body is in space right it's a really unnerving thing and people can have differences to their 125 00:13:09,680 --> 00:13:14,000 proprioception in the same way they can have differences to vision or differences to hearing 126 00:13:14,000 --> 00:13:19,360 and so if you don't have full proprioceptive capacity and i'm actually somebody who doesn't 127 00:13:20,000 --> 00:13:26,080 you don't fully have an awareness of where your body is all the time and that's slightly unnerving 128 00:13:26,080 --> 00:13:32,960 yeah it's a stimulation that tells somebody where their body is is a really good way of supporting 129 00:13:32,960 --> 00:13:37,680 the proprioceptive sense so things like um compression wear clothing and the weighted 130 00:13:37,680 --> 00:13:41,360 blankets and all of those things that are so popular in the sensory market that's what they're 131 00:13:41,360 --> 00:13:47,200 doing they're giving you information about where your body is brushing massage all of those things 132 00:13:49,280 --> 00:13:54,960 yes vibration is a great one ways of offering for proprioception and then my other one i do 133 00:13:54,960 --> 00:14:02,720 is your vestibular sense which is your sense of motion and balance so if you can incorporate a 134 00:14:02,720 --> 00:14:07,760 movement in your sensory story it has to be a movement that involves the head because you're 135 00:14:07,760 --> 00:14:13,360 the sense the receptors to your vestibular sense are in your inner ear so it's no you're just waving 136 00:14:13,360 --> 00:14:19,600 your hand that wouldn't do it but anything that creates um like an up or down or around or around 137 00:14:19,600 --> 00:14:23,440 would offer stimulation to your vestibular sense and be another way 138 00:14:23,440 --> 00:14:33,280 children in tents would you spin rock shake you know if if if they can't do that i mean is that 139 00:14:33,280 --> 00:14:43,840 what it looks like yeah yeah and actually so your senses are a part receptor organ part your brain 140 00:14:43,840 --> 00:14:49,120 understanding the information from the receptor organ so the only time we really give that any 141 00:14:49,120 --> 00:14:53,760 credit in kind of day-to-day life is when we give babies black and white picture books because we 142 00:14:53,760 --> 00:14:58,800 recognize this is a baby that can see but they're not seeing in the same way that i'm seeing and 143 00:14:58,800 --> 00:15:05,120 what's happening is it's partly you know the receptor organs picking up the information and 144 00:15:05,120 --> 00:15:12,160 partly your brain making sense of it it's about 25 percent pick up 75 make sense of it and so i 145 00:15:12,160 --> 00:15:17,680 have a friend who is blind but her eyes work perfectly right but her brain can't understand it 146 00:15:17,680 --> 00:15:26,400 and a lot of the people that i work with maybe have the receptor capacity it's taking them longer 147 00:15:26,400 --> 00:15:33,120 to put together this information and so i often talk about there being a curriculum of the senses 148 00:15:33,120 --> 00:15:39,200 and i have a course called develop your sensory lexiconry which is me teaching that curriculum 149 00:15:39,200 --> 00:15:44,480 of the senses but there are things that it is easier for your senses to do and things that 150 00:15:44,480 --> 00:15:48,720 are harder for them to do so like the black and white picture books for sight that makes sense 151 00:15:48,720 --> 00:15:54,000 doesn't it you pop out you're getting all this visual information it's easier to figure out 152 00:15:54,000 --> 00:15:58,400 that's black and that's white than it is to figure out that's peach and that's lemon yellow 153 00:16:00,400 --> 00:16:06,640 like sequence of things that you're learning and with regards to your vestibular sense that 154 00:16:06,640 --> 00:16:13,040 sense of motion and balance the early way we learn about that sense is through bold 155 00:16:13,040 --> 00:16:18,720 directional movement so you think of what we do with little babies we rock them side to side 156 00:16:18,720 --> 00:16:22,480 push them forwards and backwards in their buggy and then we pass them to their daddy 157 00:16:22,480 --> 00:16:28,720 and they lob them into the air like it's bold direction movement and if you're somebody who 158 00:16:29,520 --> 00:16:35,840 requires supportive equipment like if you're in a funky wheelchair you probably spent your early 159 00:16:35,840 --> 00:16:41,840 years maybe in a bed maybe you were in intensive care you won't have had as much chance to have 160 00:16:41,840 --> 00:16:48,560 those bold directional movements so you won't have had the opportunity to make sense of that 161 00:16:48,560 --> 00:16:55,360 stimulation and you might not be processing it fully yet and so by giving you those opportunities 162 00:16:55,360 --> 00:17:00,480 to access that movement you can give an opportunity to help somebody understand their messages coming 163 00:17:00,480 --> 00:17:08,240 from their senses and then that gives you more access to the work those two i'm caught up an 164 00:17:08,240 --> 00:17:12,160 eavesdropper on conversations where people go would you prefer to be deaf or would you prefer 165 00:17:12,160 --> 00:17:20,000 to be blind like there's a hierarchy and actually if you interjected in those conversations and said 166 00:17:20,000 --> 00:17:24,800 would you prefer to be blind or would you try to lose your vestibulism most people would go 167 00:17:25,360 --> 00:17:30,240 oh my vestibulism i've never had it but both of those senses your appropriate 168 00:17:30,240 --> 00:17:36,960 section and your stimulation are fundamental to your capacity to move and if you lose either one 169 00:17:36,960 --> 00:17:44,560 it's total paralysis and so altering stimulation and support movement and coordination and all of 170 00:17:44,560 --> 00:17:52,560 those things and those two are definitely being missed in sensory stories because in my in my 171 00:17:52,560 --> 00:17:57,600 from my experience of sensory stories looking around and working with lots of other people 172 00:17:58,080 --> 00:18:04,880 often it's it's texture it smells it's tastes even sometimes but they're all quite passive 173 00:18:04,880 --> 00:18:10,800 they're still and and uh city they do lots of other activities that are moving but i feel like 174 00:18:10,800 --> 00:18:17,120 maybe often that gets forgotten when it's a story maybe something in our brain says sit down for 175 00:18:17,120 --> 00:18:22,640 story time it's still and it's listening and it's passive and actually that's not the case 176 00:18:22,640 --> 00:18:26,240 and it makes so much sense from what you're saying that of course that's not the case 177 00:18:27,040 --> 00:18:32,320 that tattoo sensory story that you were talking about at the beginning has a repeating line for 178 00:18:32,320 --> 00:18:38,000 it i think i'm trying to remember it now there's no one else who moves like me it's just the way i 179 00:18:38,000 --> 00:18:44,400 roll and when i'm telling it in a group we sort of go around and do the story bit and then that the 180 00:18:44,400 --> 00:18:50,240 there's no one else who moves like me it's just the way i roll we if we if people are being pushed 181 00:18:50,240 --> 00:18:55,120 in their chairs we all sort of wheel around in a circle and spin and if people can move themselves 182 00:18:55,120 --> 00:18:58,800 it's like a chance for a little boogie in the middle of the story it's good one yeah that's 183 00:18:58,800 --> 00:19:02,480 a great one especially in the middle of the story because that's when you need it yeah 184 00:19:03,760 --> 00:19:10,880 so my book sensory beings sensory beings would be that development of the senses it's not a 185 00:19:11,600 --> 00:19:16,720 taught curriculum thing it's just that's my way of thinking about it as a teacher as i tend to think 186 00:19:17,360 --> 00:19:22,160 because it's got that progressive sort of step by step aspect to it it automatically gets called 187 00:19:22,160 --> 00:19:26,720 a link to that i have a link to that and your textbook and your a couple of your other books 188 00:19:26,720 --> 00:19:34,800 as well so what we'll do is we your youtube is so yeah if people are on youtube i've put up a 189 00:19:34,800 --> 00:19:41,520 load of free content recently so you know in when lockdown happened and everything went online and 190 00:19:41,520 --> 00:19:47,120 things like that i ran some conferences that were focused on supporting people with profound and 191 00:19:47,120 --> 00:19:52,480 multiple learning disabilities or people with profound intellectual and multiple disabilities 192 00:19:52,480 --> 00:20:00,640 and there were loads of films in i think we did four conferences there's probably 200 films in 193 00:20:00,640 --> 00:20:06,640 the conferences overall and about 50 of them have just gone up on youtube for anybody to watch and 194 00:20:06,640 --> 00:20:12,560 there's some there's some absolute corkers they're gorgeous i started yesterday and it's quite funny 195 00:20:12,560 --> 00:20:18,080 actually because one of my parents in my class sent it to me yesterday not knowing that we were 196 00:20:18,080 --> 00:20:24,240 having this chat today and said do you know about Joanna you should really watch this i said oh it's 197 00:20:24,240 --> 00:20:29,680 funny you say that um i'm chatting with her tomorrow but um so i've started yeah i started on 198 00:20:29,680 --> 00:20:35,120 them so yeah and they are so powerful found disability netflix on there at the moment 199 00:20:35,120 --> 00:20:39,760 because there's so many of them yeah absolutely and it's such a great place to start so if anything 200 00:20:39,760 --> 00:20:46,320 Joanna Joanna is saying tonight has kind of sparked your interest or you know got you thinking about 201 00:20:46,320 --> 00:20:51,440 how you could be doing things better for your child or at school or wherever you work they are a great 202 00:20:51,440 --> 00:20:59,680 place to start because it's all there isn't it free of free access it was it was the first one 203 00:20:59,680 --> 00:21:05,760 because i've been doing a phd the past three years and the first one was me stuck with something i 204 00:21:05,760 --> 00:21:09,760 was supposed to be writing for the doctorate and just think and i've been reading all these 205 00:21:09,760 --> 00:21:14,320 research papers and i was just thinking it would be so much easier to talk to these people than to 206 00:21:14,320 --> 00:21:20,000 try and understand what they're saying and then i i went a bit kind of daydreaming in my head and 207 00:21:20,000 --> 00:21:26,080 i thought oh i'll just ask people to talk to me and i sent an email to it was like off the top of 208 00:21:26,080 --> 00:21:31,200 my head 40 people i thought it would be really interesting to listen to if they were going to 209 00:21:31,200 --> 00:21:36,960 talk about a disability that would they would be more interesting to listen to than the research 210 00:21:36,960 --> 00:21:42,880 papers that i was reading and i didn't i sent it as an email but i didn't because what i was supposed 211 00:21:42,880 --> 00:21:48,000 to be doing was doing that work i didn't really register that i'd actually sent it and then i 212 00:21:48,000 --> 00:21:54,640 got all these replies back going yeah i'll do that oh oh gosh and then it kind of happened to me 213 00:21:54,640 --> 00:22:00,480 and then i got too many videos to fill up the first one so then the second event happened and 214 00:22:00,480 --> 00:22:04,480 then as that one was closing people were like when's the next one and you're like i haven't 215 00:22:04,480 --> 00:22:11,600 really planned to do it out of hand they were marvelous they were just yeah they were brilliant 216 00:22:11,600 --> 00:22:16,640 and and it is so much better well it's so much easier to read that's how i process information 217 00:22:16,640 --> 00:22:20,880 i'm learning so much from doing these lives rather than reading and watching it feels so 218 00:22:20,880 --> 00:22:27,920 interactive and i feel like well it's my private like free ask questions you know i like get to 219 00:22:27,920 --> 00:22:33,520 um ask all these experts and questions i'm learning so much my um practice has improved so much this 220 00:22:33,520 --> 00:22:39,920 year from being able to talk just have a conversation but it's a nice thing about the 221 00:22:39,920 --> 00:22:46,400 online world isn't it like i've always used my facebook photo albums as like archives for people 222 00:22:46,400 --> 00:22:51,120 but things like there's lots of podcasts around now i get i get interviewed on them i'm not 223 00:22:51,120 --> 00:22:57,360 like organized enough to run one but things like the um born at the right time skies we're under 224 00:22:57,360 --> 00:23:03,120 podcast with regards to found disabilities so much insight and that you can get that you like you can 225 00:23:03,120 --> 00:23:10,240 have access to that for free um is yeah it's really good yeah and and social media as a whole as well 226 00:23:10,240 --> 00:23:16,000 you get all direct access and upstate access on all of these amazing updates and practices and 227 00:23:16,000 --> 00:23:23,040 interventions and and i feel like it's really pushing the affirmative agenda forward i mean 228 00:23:23,040 --> 00:23:29,360 god you were doing affirmative practices decades ago and i think i feel like only just everyone's 229 00:23:29,360 --> 00:23:35,040 kind of trying to catch up i'm standing on the shoulders of giants you saw me present with flow 230 00:23:35,040 --> 00:23:41,760 so i went i was on the road with flow for a couple of years and flow was my sensory engagement hero 231 00:23:41,760 --> 00:23:48,320 and the first time i met her i was co-presenting one of her events with and it's just yeah 232 00:23:48,320 --> 00:23:55,520 extraordinary what people have done before us i think quite often people are landed in classrooms 233 00:23:55,520 --> 00:24:01,920 and they don't have the time to go out and find out about everything that's gone before and certainly 234 00:24:02,480 --> 00:24:08,320 where i'm basing the work i do like i base the training days that i run as the sensory projects 235 00:24:08,320 --> 00:24:14,720 on research i said it's it's difficult going to read research but it's so worth doing like there's 236 00:24:14,720 --> 00:24:21,200 so much good stuff in there and i kind of view it as my job to read i do a lot of long train journeys 237 00:24:21,200 --> 00:24:27,680 i sit on the train and i read it and i figure out what part of this would be useful to people 238 00:24:28,480 --> 00:24:34,080 i often say to people at events if i read a research paper that says they had like a specialist bit of 239 00:24:34,080 --> 00:24:38,160 equipment that cost a couple of thousand pounds and a quiet room and three members of staff and 240 00:24:38,160 --> 00:24:43,520 they did like there's no point in telling anybody anything about that because it's not but i go 241 00:24:43,520 --> 00:24:47,600 through it and i pick the bits that are going to be useful and then i try and package them up in 242 00:24:47,600 --> 00:24:54,400 ways that are easier to digest than a research paper and that's that play between there's so 243 00:24:54,400 --> 00:25:00,320 much support out there and if people are in classrooms or care settings or at home in their 244 00:25:00,320 --> 00:25:06,000 house and they can find some of it like you can send me a message on facebook anytime day or night 245 00:25:06,000 --> 00:25:10,560 and there's people out there who will who will vouch this i will write back i'm probably on a 246 00:25:10,560 --> 00:25:16,000 train i'd rather talk to you than read my research paper and there's and there's loads of people like 247 00:25:16,000 --> 00:25:21,280 me out there who will back you up and support you because the structures and systems that we work 248 00:25:21,280 --> 00:25:28,640 within or that you have to fight against often do the opposite to that yeah yeah yeah and i feel 249 00:25:28,640 --> 00:25:35,120 like the people that are in this space and choose to be in this space are doing it because they 250 00:25:35,120 --> 00:25:41,520 genuinely want to make a difference you can only make a direct difference with people you actually 251 00:25:41,520 --> 00:25:46,880 can have access to but actually that's not the case anymore you can make you can impact and influence 252 00:25:46,880 --> 00:25:54,480 and make changes with people that you will never meet it's incredible yeah yeah the the online world 253 00:25:54,480 --> 00:25:59,280 gets a lot of stick but it is a marvelous it's yeah it's a marvelous thing i've done training in 254 00:25:59,280 --> 00:26:05,600 singapore and india and uganda through the little window of the online portal so yeah i know what 255 00:26:05,600 --> 00:26:13,440 you mean yeah it's incredible sorry i don't know you were a special education teacher is that right 256 00:26:14,000 --> 00:26:23,600 is that how you started well sort of um i i my background in inclusion probably predates me 257 00:26:23,600 --> 00:26:29,840 because my mum and my grandma both worked towards more inclusive society in their own way and my 258 00:26:29,840 --> 00:26:37,760 mum's ambition was she wanted to my mum and dad met at university and my dad's ambition was to 259 00:26:37,760 --> 00:26:43,440 build a boat and go sailing around the world and my mum's ambition was to convert a double deck of 260 00:26:43,440 --> 00:26:49,440 bus so that it could carry people who use wheelchairs and take them on holiday to italy 261 00:26:50,800 --> 00:26:57,440 and i grew up on a boat that my parents built by hand and i think i'm my mum's bus like i think 262 00:26:57,440 --> 00:27:03,360 i'm i'm what became of that ambition she never got to that but i've been a special school teacher 263 00:27:03,360 --> 00:27:09,920 i've been a teaching assistant i've worked in a variety of roles within education from teaching 264 00:27:09,920 --> 00:27:15,680 assistant to inspector looking at how to support children with additional learning needs access 265 00:27:16,480 --> 00:27:22,560 education and then since the sensory projects i the youngest person i've worked with is a day old 266 00:27:22,560 --> 00:27:29,520 and the oldest in their 80s and i get to work in all sorts of different places now like i do a lot 267 00:27:29,520 --> 00:27:35,200 of heritage settings has been wonderful because heritage places have all these gorgeous stories 268 00:27:35,200 --> 00:27:40,800 that they want to share with people and i'm like you could do it in a sensory setting as well 269 00:27:41,600 --> 00:27:47,760 she made me the smell of george and sweat at hampton court palace for a sensory story once like 270 00:27:47,760 --> 00:27:53,920 the things you didn't think would happen but i've also been a foster carer for children with complex 271 00:27:53,920 --> 00:28:00,320 disabilities and i have my own children so i have a neurodivergent child and a severely neuro typical 272 00:28:00,320 --> 00:28:11,920 child yes um yeah and and i feel like that then when you're talking you can uh you can 273 00:28:13,120 --> 00:28:17,280 relate to and others can relate to you because what you're saying is realistic 274 00:28:17,280 --> 00:28:21,840 like you were saying well quiet rooms and three adults it isn't realistic you know that because 275 00:28:21,840 --> 00:28:29,120 you've lived it yeah that's what i do i don't um i none of what i put out this training is based on 276 00:28:29,120 --> 00:28:33,200 anything i've done i was a fairly all right teacher and i'm a fairly all right parent but 277 00:28:33,200 --> 00:28:38,400 i wouldn't want anybody to base anything they did off stuff i did in my classroom or stuff i do with 278 00:28:38,400 --> 00:28:44,880 my children i go through the research and i kind of filter it through my experience so it's that 279 00:28:44,880 --> 00:28:50,880 experience that i'm using to judge is this worth telling to other people and so it's it's not a 280 00:28:50,880 --> 00:28:57,760 perfect filter but it's yeah that's that's what i'm bringing to it it's bite-size and it's realistic 281 00:28:57,760 --> 00:29:05,600 what are you working on at the moment what are your projects for me so um for the past three 282 00:29:05,600 --> 00:29:12,240 years i've been studying for a PhD in identity and belonging for people with profound intellectual 283 00:29:12,240 --> 00:29:21,920 disabilities and the big thing that i've done there is work out a way of doing research with 284 00:29:22,800 --> 00:29:28,240 people with profound intellectual disabilities and it's one of those things that at face value 285 00:29:28,240 --> 00:29:34,240 seems like it wouldn't be possible because research is inherently an intellectual pursuit 286 00:29:34,240 --> 00:29:40,080 and this is a demographic of people defined by their lack of intellectual capacity but there's 287 00:29:40,080 --> 00:29:49,600 little moves and things you can do and in two weeks time just over two weeks i will sit my 288 00:29:49,600 --> 00:29:54,800 final viva which is like the big exam that you do at the end of the PhD and it will be decided 289 00:29:54,800 --> 00:30:00,880 whether i have done it or not but hopefully i will pass that viva and then i'll be doctor joe 290 00:30:02,160 --> 00:30:08,560 so that's what i have been working on and until i've done that viva i must not work on anything 291 00:30:08,560 --> 00:30:14,160 else because it's quite a big deal sitting the viva but i am in my head and it's funny that you 292 00:30:14,160 --> 00:30:21,280 started this by talking about me and flow because flow used to run flows forums i don't know if it 293 00:30:21,280 --> 00:30:26,640 was a flows forum that you saw us at or if it was one of the courses we used to do courses together 294 00:30:26,640 --> 00:30:34,320 but flow used to run like maybe once or twice a year flows forum and she would invite all sorts 295 00:30:34,320 --> 00:30:39,520 of different speakers it's a bit like the pmld conferences that i ran online but it was in person 296 00:30:39,520 --> 00:30:44,240 she would invite all these different people who would do new stuff about this world or who were 297 00:30:44,240 --> 00:30:50,560 doing new things or she'd just have everything and it was fantastic what you'd learn from the 298 00:30:50,560 --> 00:30:56,320 people that she platformed it was also the opportunity for those people who were sitting 299 00:30:56,320 --> 00:31:03,840 as delegates in those rooms to meet each other and to meet people in other schools who did a job like 300 00:31:03,840 --> 00:31:09,200 theirs and it's one of those things quite often especially if you work with the people with the 301 00:31:09,200 --> 00:31:15,840 most complex levels of disability quite often you're isolated in your practice because you'll be 302 00:31:15,840 --> 00:31:19,840 like the only teacher in the school that does that or you're the you know the specialist support 303 00:31:19,840 --> 00:31:25,120 person who deals with that particular person and so the chance to bring the community together 304 00:31:25,120 --> 00:31:32,560 was really really valuable and so i'm daydreaming about not flows forum but joe's forum 305 00:31:33,040 --> 00:31:39,520 and it would be i'd like to do one on voice what voice means to people with complex disabilities 306 00:31:39,520 --> 00:31:46,160 and bring insight from research in an accessible and friendly way and all those loving people 307 00:31:46,160 --> 00:31:56,000 who do important stuff but i don't know how to do that i'm good at reading the research 308 00:31:56,000 --> 00:32:03,920 yeah yeah i'll put that on her to-do list i don't know how you book the venues 309 00:32:03,920 --> 00:32:09,920 how do you do the catering all of that isn't it because you can be really excited about your 310 00:32:09,920 --> 00:32:14,960 specialist subject or your interest but then now you've got to market yourself and you've got to 311 00:32:14,960 --> 00:32:21,840 book venues and you've got to design posters i just want to talk to all these people i do it small 312 00:32:21,840 --> 00:32:27,280 scale for the lexican and i've run i've run the super sensory lexican every year at around about 313 00:32:27,280 --> 00:32:33,280 my birthday because it's my favorite thing to do and i book venues for that and i sort food for 314 00:32:33,280 --> 00:32:39,120 that and hopefully everybody who's been on a lex had dinner and was sat inside somewhere for it 315 00:32:39,120 --> 00:32:46,400 that i have oh i remember booking a venue i think it was in bristol and i do a thing 316 00:32:47,840 --> 00:32:56,160 so i want to book ethical venues i've always booked places that like do something nice with 317 00:32:56,160 --> 00:33:02,320 your money rather than booking just your standard corporate hotel so i end up in these weird 318 00:33:02,320 --> 00:33:08,560 improvised spaces and like this particular venue you paid you hired the hall space and then i think 319 00:33:08,560 --> 00:33:14,320 they ran a super kitchen and an initiative for single parents all of that was what was being 320 00:33:14,320 --> 00:33:20,320 funded by your higher fee so i was like great definitely the venue i want and it marketed as 321 00:33:20,320 --> 00:33:25,840 an ethical venue so it's like perfect didn't even have to google belong got my venue ordered the 322 00:33:25,840 --> 00:33:31,680 dinner got there at eight o'clock in the morning for a court for a conference that starts at nine 323 00:33:31,680 --> 00:33:37,360 o'clock and obviously i'm paying by the hour and this is not a get rich quick strategy this is a 324 00:33:37,360 --> 00:33:42,480 way to have a very happy and fulfilling life but i'd only paid for one hour before my delegates 325 00:33:42,480 --> 00:33:47,440 arrived i was like i can set it up in an hour it'll be fine i got there and it was a nightclub it 326 00:33:47,440 --> 00:33:54,080 was underground it had no lights no tables no chairs it got like sticky floors and the toilet 327 00:33:54,080 --> 00:33:58,480 in the corner and i'm there eight o'clock in the morning and i've got 30 delegates arriving at nine 328 00:33:58,480 --> 00:34:05,600 o'clock and you're just like so maybe if i run a forum i should just book a hotel 329 00:34:05,600 --> 00:34:14,480 or visit a cafe next door and beg chairs off them i found fairy lights from my boxes of 330 00:34:14,480 --> 00:34:20,160 sensory resources and by the time people arrived it looked like a little sort of um like a little 331 00:34:20,160 --> 00:34:28,640 underground cave like a sort of place we thought oh this is clever it was very on brand it was all 332 00:34:28,640 --> 00:34:36,960 improvised the stickiness wasn't really needed oh that's brilliant but it happens and you know 333 00:34:37,760 --> 00:34:42,240 you just got along with it haven't you just got on with it i feel like your time being a foster 334 00:34:42,240 --> 00:34:47,440 care and a special education teacher probably prepared you really well for just off the cuff 335 00:34:47,440 --> 00:34:54,160 just thinking on the spot you know the people who come on the lex are also like that as well 336 00:34:54,160 --> 00:34:58,800 so they're totally willing they're far too late actually if they'd arrived at the time they'd 337 00:34:58,800 --> 00:35:04,800 have probably helped you out and you know people did yes yes early delegates did help carry the 338 00:35:04,800 --> 00:35:10,400 chairs yeah we found planks somewhere i don't know where we got the planks from but all our tables 339 00:35:10,400 --> 00:35:17,680 i love it and why not and actually what a great icebreaker oh somebody in the chat was at the 340 00:35:17,680 --> 00:35:24,160 venue i hope there was one person who arrived and they came downstairs to the underground 341 00:35:25,280 --> 00:35:30,400 cave that i'd built for them and they looked in and they went my friend is claustrophobic i'm not 342 00:35:30,400 --> 00:35:41,200 sure if they're going to be able to come in on the dot they survived yeah that's brilliant 343 00:35:41,200 --> 00:35:46,480 i feel like i'm um i'm kind of following in your footsteps a little bit because i've also been a 344 00:35:46,480 --> 00:35:51,280 foster carer and special education teacher and a teaching assistant i know i obviously need to 345 00:35:52,240 --> 00:35:58,080 start my own research i'm really excited to see the impact of that because actually the idea of 346 00:35:58,080 --> 00:36:03,840 belonging and being included in the research and having a voice within the research and tapping 347 00:36:03,840 --> 00:36:13,120 into that is incredibly needed and i yeah i'm really excited to see actually what impact that 348 00:36:13,120 --> 00:36:19,760 has yeah i hope it will have some impact it's definitely a thing i'm doing it is a survival 349 00:36:19,760 --> 00:36:28,720 process of an achievement yeah but i mean it's it's needed it's really needed everything you do is 350 00:36:28,720 --> 00:36:36,480 really needed is what i wanted you on here i think it often when we talk about research it often 351 00:36:36,480 --> 00:36:44,320 seems like a very sort of dusty you know shelves and libraries out of touch thing and especially 352 00:36:44,320 --> 00:36:49,200 when you hear about research being done that does seem so fantastically out of touch in my 353 00:36:50,320 --> 00:36:58,080 quiet room with the three members of staff type of stuff but the risk of not being included in 354 00:36:58,080 --> 00:37:07,360 research or not having a voice head in research is huge just from like a simple um policy level 355 00:37:07,360 --> 00:37:13,840 using out the government officer who's just been put in charge of health care or has just been put 356 00:37:13,840 --> 00:37:18,640 in charge of adult care or has just been put in charge of education what they do is they go okay 357 00:37:18,640 --> 00:37:24,080 we've got to decide what we're doing what do we know about this and they look for what we know 358 00:37:24,080 --> 00:37:29,440 as a nation and what we know as a nation is what our research sets so they go and find the people 359 00:37:29,440 --> 00:37:34,480 that know stuff that's the researchers actually they probably don't they'll send some sort of 360 00:37:34,960 --> 00:37:40,560 diversity who couldn't afford to work for a year go and find out what we know about this what do we 361 00:37:40,560 --> 00:37:45,360 know about teaching children to read go and find out and that 20 year old has to go and read all 362 00:37:45,360 --> 00:37:49,200 the research that's been done on teaching people to read and then they write it up as a summary 363 00:37:49,200 --> 00:37:52,640 and they come back to the ministry they go this is what we know about teaching children to read 364 00:37:52,640 --> 00:38:00,160 and if people with profound disabilities aren't even there in the research they won't be considered 365 00:38:00,160 --> 00:38:06,240 on the policy table they don't exist you know so just doing research that involves them 366 00:38:07,600 --> 00:38:11,440 in some way because it it gives them a presence in those spaces 367 00:38:11,440 --> 00:38:23,920 Absolutely and I feel like it's it's lazy to assume that you can't because there must be a way 368 00:38:23,920 --> 00:38:36,640 there must be a way and and that's what your research proves yeah and I suppose at a classroom 369 00:38:36,640 --> 00:38:42,400 on ground in practice level we could also be doing that couldn't we we can be including 370 00:38:44,160 --> 00:38:51,680 these people these children that we care for within EHCPs within the IEPs within their reports 371 00:38:51,680 --> 00:38:56,560 within their meetings with parents it takes more thinking about to find their voice and 372 00:38:57,360 --> 00:39:01,360 include them but but we that's what we should absolutely should be doing for exactly the same 373 00:39:01,360 --> 00:39:06,400 reason that you're saying I feel like we should brainstorm what I do after PHD because you started 374 00:39:06,400 --> 00:39:11,280 with flows forum and then we were we looked back around that and then that's my thought for the 375 00:39:11,280 --> 00:39:17,840 first one if I ran one it would be about voice because that's the subject that's looked at in 376 00:39:17,840 --> 00:39:22,960 research and obviously people think of voice as being the sound that I'm making with my mouth 377 00:39:22,960 --> 00:39:28,800 but within special education we also recognise voice in sign in symbol in like multiple other 378 00:39:28,800 --> 00:39:35,520 ways but there are more extensions to that and more extensive ways of understanding voice and 379 00:39:35,520 --> 00:39:42,560 quite often schools have got some sort of pressure on them to include people voice so like I saw 380 00:39:42,560 --> 00:39:50,080 a write-up that said we have successfully included the children with profound intellectual disability 381 00:39:50,080 --> 00:39:56,400 in the student council and me reading I was like brilliant great how did you do that because I'm 382 00:39:56,400 --> 00:40:00,720 looking to include people with profound intellectual disability in research how did you do it brilliant 383 00:40:00,720 --> 00:40:06,960 and how they've done it was those children had been wheeled to other classrooms where they picked 384 00:40:06,960 --> 00:40:12,960 up photos and they hadn't picked them up they've been handed photos that have been taken by more 385 00:40:12,960 --> 00:40:19,360 intellectually able children photos of things that were of concern to them and then they wheeled 386 00:40:19,360 --> 00:40:28,640 the photos into the room and that's including them that's just using them as a cart it's totally 387 00:40:28,640 --> 00:40:36,960 spoken yeah exactly that yeah but but the sort of the galling thing is it it was published because 388 00:40:36,960 --> 00:40:44,800 it is progressive they they tried it was a step being like oh but there's a few more steps we 389 00:40:44,800 --> 00:40:50,400 could take and there's different ways of listing them there are so we are on the we're not even 390 00:40:50,400 --> 00:41:00,160 on the first step let's be honest yeah well last saturday I went to a conference held by my local 391 00:41:00,160 --> 00:41:06,960 mp ahead of the new budget going to london or that kind of thing that was last saturday and one of the 392 00:41:06,960 --> 00:41:13,280 things that the main person at county had said Cornwall council actually had said was 393 00:41:13,280 --> 00:41:21,200 was we have found the way to include people's voice and parents next to me were like fantastic 394 00:41:21,200 --> 00:41:26,880 how are you doing this well we're going to use cymbals and then they went oh well my my child 395 00:41:26,880 --> 00:41:32,880 doesn't use them they can't access it oh well they're going to use sound buttons and my child 396 00:41:32,880 --> 00:41:36,960 can't do that and whose voice would that be and who's deciding what's on that sound button you 397 00:41:36,960 --> 00:41:41,520 know these parents had such great I mean parents are incredible like they just are they they just 398 00:41:41,520 --> 00:41:45,360 know and and then we're asked all these questions and she didn't have an answer and actually what 399 00:41:45,360 --> 00:41:50,160 you were saying then just reminded me exactly if that is it's great it's fantastic that you 400 00:41:50,160 --> 00:41:56,640 recognize that these people voices need to be on this document absolutely I think they've worked 401 00:41:56,640 --> 00:42:02,320 out the how yeah they're doing that that's great that they figured that bit out it's just different 402 00:42:02,320 --> 00:42:09,600 places in the journey isn't it and and being able to find out about the next bit would be really 403 00:42:09,600 --> 00:42:15,280 good too yeah it's always felt really awkward on the pupil voice section when when I'm using first 404 00:42:15,280 --> 00:42:25,920 person actually and sometimes and well often I choose not to use first person I say an adult who 405 00:42:25,920 --> 00:42:33,360 knows them very well has observed that because actually we don't know actually how they are 406 00:42:33,360 --> 00:42:38,480 feeling if they are happy in school if they feel like they're thriving if their mental health is 407 00:42:38,480 --> 00:42:43,760 good we can make an assumption on what we see and what we know about them but we we we don't 408 00:42:43,760 --> 00:42:52,480 necessarily know and and unless we we do we yeah work out that we can and it's I guess it's different 409 00:42:52,480 --> 00:42:58,400 for every individual as well it's so individual isn't it like how to access access point there's 410 00:42:58,400 --> 00:43:06,640 a researcher that I really admire who's just doing a PhD looking at the practice in frozen 411 00:43:06,640 --> 00:43:13,120 light sensory studio so frozen light are a sensory theater company and they've been collaborating 412 00:43:13,120 --> 00:43:18,160 with a team of people with profound multiple learning disabilities to create a new show 413 00:43:18,720 --> 00:43:24,160 and this researcher has sat in on those collaborations and watched what's going on 414 00:43:24,800 --> 00:43:29,520 and she published a paper recently and she was talking about just that issue and she said there 415 00:43:29,520 --> 00:43:35,760 is a risk of their voices being dubbed over by the voices of other people and you think yeah even 416 00:43:35,760 --> 00:43:41,200 even when you are the person who knows them the best it's still going to be a little bit your voice 417 00:43:41,200 --> 00:43:48,160 comes through isn't it and and what you would want is for it to be wholly their voice and you're doing 418 00:43:48,160 --> 00:43:54,400 like you would you would give it as much as you possibly can but that recognition that your voice 419 00:43:54,400 --> 00:44:00,160 is not their voice it might be the best approximation that we've got but it's not their voice 420 00:44:00,160 --> 00:44:07,760 it's worth it and just yeah just the straight writing in person first language it's just yeah 421 00:44:07,760 --> 00:44:14,320 it's just a bit icky isn't it yeah the person who feels uncomfortable with that but the point of doing it was to 422 00:44:15,040 --> 00:44:22,000 this is a sad one isn't it but they have been so objectified that the point of doing it was to 423 00:44:22,000 --> 00:44:26,320 alert people to go actually this is a person who's got opinions and thinks things and feels things 424 00:44:26,320 --> 00:44:33,520 and so there was a reason for it in the first place so one of the things you engage yeah absolutely 425 00:44:33,520 --> 00:44:41,760 i think we need to everybody everybody that works with in any capacity of like if it is care or 426 00:44:41,760 --> 00:44:52,880 school or home or whatever we all need to have the aim of listening and sharing views and their 427 00:44:52,880 --> 00:44:59,200 their voice as much as we can but making sure that when we do it we're asking ourselves why and for 428 00:44:59,200 --> 00:45:04,240 what benefit because it needs to be for their benefit it needs to be because they want to 429 00:45:04,240 --> 00:45:10,400 because they're benefiting not to tick a box not to jump through a hoop not to like a bit like your 430 00:45:10,400 --> 00:45:16,240 school council example is perfect for that you know was that for that young person's benefit 431 00:45:16,240 --> 00:45:21,840 or was it for the school's benefit or or for their website or their lovely photos or whatever 432 00:45:21,840 --> 00:45:26,160 i mean i can't question i can't answer that because i wasn't there but i certainly see it 433 00:45:26,720 --> 00:45:31,360 in my own practice i just think i have to constantly question why are we including this 434 00:45:31,360 --> 00:45:39,600 in that one oh why oh why and and is it for the child's benefit yeah the listening in different 435 00:45:39,600 --> 00:45:46,640 ways the research that i was just talking about johanna rua she has an instagram profile and 436 00:45:46,640 --> 00:45:54,640 we're on instagram up we put sensory i think and she has been recording information so when i did 437 00:45:54,640 --> 00:45:59,440 my research i worked collaboratively with four young women who have profound most polemic 438 00:45:59,440 --> 00:46:05,440 disabilities and after we worked together i would write out my records of what happened you know 439 00:46:05,440 --> 00:46:12,640 like a diary write what what we did but johanna hasn't been writing she's been drawing what 440 00:46:12,640 --> 00:46:19,360 happens and she draws in highlighter pen on post-it notes and so she spends time with these people 441 00:46:19,920 --> 00:46:27,120 and all the time she's an artist so her highlighter pen drawings are way beyond anything mine would be 442 00:46:27,120 --> 00:46:33,520 um she she does these little post-it note drawings and so the data that she has from her research 443 00:46:33,520 --> 00:46:38,400 my data from my research is all these hundreds and hundreds of pages of notes that i then go 444 00:46:38,400 --> 00:46:43,520 back through and look at what happened and analyze in all sorts of different ways her data is thousands 445 00:46:43,520 --> 00:46:49,920 of tiny pictures on post-it notes and her data analysis was gorgeous because of course she stuck 446 00:46:49,920 --> 00:46:56,800 them all over a wall and then you come around and you see patterns and you see scenes and i think 447 00:46:56,800 --> 00:47:01,280 anybody who's worked with people with fundamental learning disabilities if you go and look at those 448 00:47:01,280 --> 00:47:07,520 pictures and we'll find we'll we'll share the link to her post yeah um i bet you see things in it 449 00:47:07,520 --> 00:47:14,240 that you know and there's no words at all but there is meaning there and there is something 450 00:47:14,240 --> 00:47:20,080 communicated and it and it resonates and finding those different ways of communicating things and 451 00:47:20,080 --> 00:47:25,280 understanding meaning because once you use language you tend to think of meaning as being a language 452 00:47:25,280 --> 00:47:30,720 based thing but language is just one way of representing meaning so when you sort of 453 00:47:30,720 --> 00:47:35,920 appreciate these other ways of representing meaning then you can start you end up i was 454 00:47:35,920 --> 00:47:40,320 and and my undergraduate degree was in philosophy which i think accounts for a lot of these 455 00:47:41,760 --> 00:47:48,000 but once you're thinking of other ways of apprehending meaning you can ask what is meaning 456 00:47:48,560 --> 00:47:56,240 to that person meaning to me is a linear connected reasons language-based thing but what's their 457 00:47:56,240 --> 00:48:01,280 meaning how do they experience their meaning how do they express their meaning and then what would 458 00:48:01,280 --> 00:48:09,040 that voice be and you're off you're off into a philosopher's paradise yeah asking that question 459 00:48:09,040 --> 00:48:15,280 even without an answer because that's just that we're asking ourselves that question constantly 460 00:48:15,280 --> 00:48:20,000 i think is really good practice actually is what does meaning look like for this child or 461 00:48:20,800 --> 00:48:26,480 young person or adult or whatever um what what does this meeting look like you know what what 462 00:48:26,480 --> 00:48:30,400 does this what does the answer this question look like for this child it might not be an answer but 463 00:48:30,400 --> 00:48:35,840 it's just asking yourself that i think is really good practice yeah yeah absolutely right back to 464 00:48:35,840 --> 00:48:42,000 the beginning the sensory story oh yeah saying we do lovely sensory stories or is it actually 465 00:48:42,800 --> 00:48:50,240 does this have meaning and purpose and is it engaging for this person because if it isn't 466 00:48:50,240 --> 00:48:57,760 what are we doing i sometimes i see sensory stories being done like a like an activity out of a box 467 00:48:57,760 --> 00:49:04,560 yeah i go what was it last time i saw one like a sensory story about autumn so there's a load of 468 00:49:04,560 --> 00:49:09,600 leaves and there's bugs and there's mud and all great you know good quality good sensory stuff 469 00:49:09,600 --> 00:49:17,120 and it's read out and then it's put away and then it's on to the next thing and like oh i you can 470 00:49:17,120 --> 00:49:23,360 get it's not bad that's nice you played with some leaves and you've got some mud it's lovely um but 471 00:49:23,360 --> 00:49:30,240 you can get so much more out of them and when i do training about them i do a day called ambitious 472 00:49:30,240 --> 00:49:36,080 and inclusive sensory storytelling and i always presume that the people that i do that day to 473 00:49:36,080 --> 00:49:41,280 know what sensory story is already i mean if you don't you would learn it by the end of the day 474 00:49:41,280 --> 00:49:46,640 but the day isn't about how to write sensory stories or how to tell it's about how you get 475 00:49:46,640 --> 00:49:54,400 more out of them because there are ways of telling them that just something like um considering the 476 00:49:54,400 --> 00:50:00,240 processing time of people that that version of the sensory story that i'm i'm sort of i have got a 477 00:50:00,240 --> 00:50:03,280 particular event in mind but i'm cobbling it together because i don't want to point at a 478 00:50:03,280 --> 00:50:09,280 particular setting and say oh that was enough sensory story but if you've had a think about 479 00:50:09,280 --> 00:50:14,320 what the processing time of the different people in the room is you might have somebody who when 480 00:50:14,320 --> 00:50:19,920 you put the dried leaves in their hand feels the dried leaves straight away closes their fingers 481 00:50:19,920 --> 00:50:24,480 around them hears the crackle as they close their fingers gets all that information and you might 482 00:50:24,480 --> 00:50:30,720 have somebody for whom when the dried leaves go on their hand those messages very slowly start to go 483 00:50:30,720 --> 00:50:36,320 to their brain and by the time they got like halfway up to their elbow the dried leaves have 484 00:50:36,320 --> 00:50:42,480 gone on to the next person and so they just sort of very passive and that's one of these things 485 00:50:42,480 --> 00:50:49,360 that you see these people who are very passive and there is research around the passivity of 486 00:50:49,360 --> 00:50:54,160 people with profound and multiple learning disabilities that shows that some of that 487 00:50:54,160 --> 00:50:59,440 passivity is physiological like if you can't move your arm you're not going to be waving your arm 488 00:50:59,440 --> 00:51:05,680 around but a lot of it is learned and if the experiences that you were offered passed you by 489 00:51:05,680 --> 00:51:11,840 before you had the chance to have them then of course you're going to be passive so adding in 490 00:51:11,840 --> 00:51:17,920 questions about processing time can enrich how you tell the stories and how often you repeat them and 491 00:51:17,920 --> 00:51:24,000 the ways in which you repeat them can enable two-way communication it's all these things you can tell 492 00:51:24,000 --> 00:51:29,280 the stories about because obviously it's autumn so we're doing the autumn sensory story we're doing 493 00:51:29,280 --> 00:51:34,800 the halloween sensory story we'll do a christmas sensory story but actually there's so many more 494 00:51:34,800 --> 00:51:40,720 stories we can tell them stories about particular people events in their life stories to give them 495 00:51:40,720 --> 00:51:45,680 access to new experiences and there's all this way like i'm such a fan of sensory stories that 496 00:51:45,680 --> 00:51:50,480 you can just go into them and do some first understanding of sensory stories actually that 497 00:51:50,480 --> 00:51:58,720 it was that it can give offer experiences or and support understanding of experiences or help 498 00:51:58,720 --> 00:52:04,560 anticipate experiences that they haven't yet had access to for example i don't know going on holiday 499 00:52:04,560 --> 00:52:09,120 on a plane for example lots of my children not only any of that my children have ever been on a 500 00:52:09,120 --> 00:52:13,200 plane before so we're doing all these lovely stories about vehicles and planes it doesn't mean 501 00:52:13,200 --> 00:52:18,720 anything to them unless they've actually experienced it practice you feeling it um like feeling the 502 00:52:18,720 --> 00:52:24,960 vibration hearing the sounds you know being talked in or whatever it is sit laying back on the chair 503 00:52:25,600 --> 00:52:31,920 it gives them that experience so that if we're then talking about an airplane in future or we do 504 00:52:31,920 --> 00:52:38,320 another topic about whatever or they're about to go on a plane then they've got something to base it 505 00:52:38,320 --> 00:52:44,480 on yeah you're totally so the original sensory story project was just five sensory stories and 506 00:52:44,480 --> 00:52:50,960 i said at the start there's now over 30 published on the projects since 2020 i've been publishing 507 00:52:50,960 --> 00:52:58,240 stories by other authors and my most recent sensory story by another author is by a canadian 508 00:52:58,240 --> 00:53:04,560 special education teacher and it's called the family party and the purpose of that story is 509 00:53:04,560 --> 00:53:11,440 to support people in going to parties that they might be going to go to and so it's all the 510 00:53:11,440 --> 00:53:16,080 opportunity to rehearse the things that might happen to practice to work out how you're going 511 00:53:16,080 --> 00:53:22,160 to cope with those experiences in order to build your capacity to access an actual party and so 512 00:53:22,160 --> 00:53:27,280 yes exactly what you say and that thing about you might not have experienced it i worked with um 513 00:53:27,280 --> 00:53:35,680 um somebody who worked so it was it was it was one of these magic of social media things somebody 514 00:53:35,680 --> 00:53:40,800 was sending me messages backstage on facebook and i think i think the backstage of my facebook is 515 00:53:40,800 --> 00:53:45,200 probably where i have the most impact in the world and she was she just sent me messages saying i 516 00:53:45,200 --> 00:53:49,840 work in this place and i i've heard about sensory stories and could i tell a sensory story and i was 517 00:53:49,840 --> 00:53:54,400 sending back yeah of course you can and she's like well we don't have any i was like you can make 518 00:53:54,400 --> 00:53:59,840 them up and i'm sending lots of messages like that all the time so i wasn't particularly paying 519 00:53:59,840 --> 00:54:04,160 not that i wasn't paying attention but i wasn't clobbing into who she was and what was going on 520 00:54:05,120 --> 00:54:13,680 and then she started to send me pictures um and she worked in an institution in a country where 521 00:54:13,680 --> 00:54:20,480 provision for people with disabilities is something that we would recognize 100 years ago 522 00:54:20,480 --> 00:54:29,200 and these people in this institution she she she'd done she'd done a sensory story about going to the 523 00:54:29,200 --> 00:54:34,560 beach and having your ice cream fall off the cone and she said and i realized none of them have left 524 00:54:34,560 --> 00:54:40,880 the building they've not even been outside and then she set about figuring out how to get the 525 00:54:40,880 --> 00:54:47,520 ice creams and so it was this gorgeous thing like from the sensory story to the real experience and 526 00:54:47,520 --> 00:54:54,240 later on in my research there are photos of these complexly disabled people in the village square 527 00:54:54,240 --> 00:55:02,480 covered in ice cream amazing yeah shows how powerful it can be right both sharing 528 00:55:03,600 --> 00:55:10,880 from on social media but also by just giving it a go and actually are are asking these questions and 529 00:55:10,880 --> 00:55:17,520 and um yeah trying it so i suppose i mean as we're coming to an end i kind of like to give myself a 530 00:55:17,520 --> 00:55:22,640 challenge after every everything just because i want to improve my practice so i suppose coming 531 00:55:22,640 --> 00:55:28,000 from this conversation tomorrow i'm going to be thinking a lot about the why you know why am i 532 00:55:28,000 --> 00:55:35,840 doing this who is it for and actually what how can we uh what's happening before the event what's 533 00:55:35,840 --> 00:55:40,400 happening after the event and just maybe giving it a little bit more time to to land and to see 534 00:55:40,400 --> 00:55:44,240 where it goes rather than having too much of a plan in my head right that's over let's move on 535 00:55:44,880 --> 00:55:50,000 maybe just letting it just settle and kind of giving it an opportunity to see what happens i 536 00:55:50,000 --> 00:55:56,080 suppose is probably my challenge for this week if you wanted things around sensory stories if people 537 00:55:56,080 --> 00:56:03,840 are doing sensory stories already then i mean the you know do an audit are your sensory is your 538 00:56:03,840 --> 00:56:08,800 sensory stuff a really good sensory invite is it interesting to the senses or is it really 539 00:56:08,800 --> 00:56:14,640 interesting to the senses or is it reliant on intellectual curiosity is your text concise 540 00:56:15,840 --> 00:56:21,760 what what's your capacity to allow for different processing times and how could you set up that 541 00:56:21,760 --> 00:56:26,400 group situation so you could allow for those different times so like if you're doing a big 542 00:56:26,400 --> 00:56:31,680 group could you do it in small groups and rotate around do you have to do it in the big group 543 00:56:31,680 --> 00:56:38,160 what about thinking about developmentally relevant sensory experiences so picking the 544 00:56:38,160 --> 00:56:44,880 stuff that i can access at the level of capacity that i have of my senses what about telling 545 00:56:44,880 --> 00:56:51,600 sensory stories about other things like i talk about how the stories that we hear when we're 546 00:56:51,600 --> 00:56:56,960 little about who were like i i said i grew up on a boat and i always tell people i grew up on a boat 547 00:56:56,960 --> 00:57:01,520 because it's one of my favorite stories to tell about myself but i've been told stories about who 548 00:57:01,520 --> 00:57:08,240 i was on the boat and those little stories about two-year-old me that who i don't remember the 549 00:57:08,240 --> 00:57:14,000 experiences but those stories that i've been told are part of my understanding of who i am right 550 00:57:14,000 --> 00:57:19,840 if i've got an intellectual disability if i if i haven't got access to those stories in that way 551 00:57:19,840 --> 00:57:25,200 can you tell me stories that tell me who i am can you tell me those stories in a sense noana 552 00:57:25,200 --> 00:57:32,000 thank you so much i am so i've left more inspired than i even was 13 years ago when i saw you last 553 00:57:32,000 --> 00:57:39,760 time and yeah i hope to see you in person again um i guess absolutely i'm really excited to hear 554 00:57:39,760 --> 00:57:44,560 about um the impact from your research because i think it's gonna be really exciting thank you 555 00:57:44,560 --> 00:58:00,960 so much noana and i hope you have a wonderful evening you too thanks all bye