all right 00:09 so we'll um we'll get started and kick 00:12 off uh our programming for this week 00:16 i'm going to introduce uh what 00:20 the programming is attached to 00:24 and then fran will introduce our 00:26 wonderful guest who's beaming in live 00:28 from across the pond 00:30 in wales which is uh as awful as this 00:33 pandemic is 00:34 the one thing that i think is really 00:38 heartening and has been really great is 00:40 the inner connectivity 00:42 and the ability to have these types of 00:45 you know gatherings 00:46 uh that uh we otherwise wouldn't 00:50 the frequency that we used to do that uh 00:53 before we could have live events 00:55 um uh you know 00:58 just didn't happen and now it happens 00:59 regularly um 01:01 so my name is uh dr amy bowman mackelhon 01:05 i'm the 01:06 director and curator of the carlow 01:08 university art gallery in pittsburgh 01:11 i'm also an art history professor there 01:14 and 01:14 um overseeing the art program right now 01:17 um this uh every friday we have virtual 01:22 events 01:23 uh that is uh in conjunction with 01:26 our current exhibition anthropology of 01:28 motherhood and the culture of care 01:30 and the exhibition 01:34 the project is an ongoing project that 01:36 fran 01:37 founded and it's now in its 01:40 uh i think sixth iteration um and so 01:44 i i was lucky enough to be invited this 01:46 year to co-curate it with her 01:48 um so it was originally uh curated 01:51 for the three rivers arts festival and 01:53 that's where it's been held the past few 01:54 years 01:55 and it's a really radical show that 01:57 centers caregiving 01:59 uh center's motherhood is is is um 02:02 looking at maternal feminisms and the 02:05 the unique 02:05 part about it uh in its in its initial 02:09 sort of iterations was that it combined 02:12 um 02:12 a nursing space a space of respite with 02:15 an exhibition space 02:16 these things that are usually um these 02:18 spaces that are usually separate 02:20 and segregated uh become one and so with 02:24 this 02:24 version of the show we were able to we 02:26 had to do it digitally 02:27 a digitally native show this year 02:29 because of the pandemic for thrivers 02:31 arts festival we were able to bring 02:33 uh the artworks to the carlo university 02:35 art gallery 02:37 to have the physical show albeit without 02:39 the nursing 02:41 and the space of care 02:45 that's usually associated with it and i 02:48 want to point out that sue powers 02:50 is with us today and she's one of the 02:51 artists so thanks for joining us sue 02:55 um but the this iteration of the 02:57 exhibition 02:58 uh really expanded upon the notion 03:02 of motherhood into this broader 03:04 definition of caregiving 03:05 and this is particularly important and 03:08 relevant right now 03:09 given the moment that we are living 03:11 through but beyond that it is 03:13 important generally and many times the 03:16 the work of caregivers and the work of 03:19 mothers and the work of parents 03:21 and the work of uh people that uh just 03:25 as their profession 03:26 and as as their um as their calling is 03:29 about 03:29 the care of others is usually invisible 03:32 work 03:33 it's usually not 03:36 valued and the primary objective of this 03:40 exhibition is really to value it to 03:42 raise it up to elevate it 03:44 to debt to not only um 03:47 uh uh you know proclaim and 03:50 um uh provide a platform 03:54 for the work but also to to 03:57 um really unpack the the art the 03:59 artfulness of it all 04:01 um and so with that i'm gonna throw it 04:03 to fran 04:04 and so anyways we have a whole series of 04:06 programs that uh intersect with 04:08 these broader ideas of care um and so 04:11 with that i'll throw it to france 04:13 uh to introduce our guest tonight thanks 04:15 thanks amy welcome everyone so glad to 04:18 see everyone here 04:19 with us today um i 04:22 uh i i have a very personal 04:26 introduction to give to this our 04:29 esteemed guest right now 04:30 miss ruth fabi she's an incredible human 04:33 being 04:34 great friend hold on and let some people 04:38 in 04:40 um um 04:43 uh one of the most 04:46 important cultural producers in 04:49 disability arts 04:51 in the uk and i would argue in the world 04:54 um don't don't shake your head at me 04:58 ruth 05:01 um and a dear dear friend uh ruth has 05:04 been 05:06 one of the greatest advocates for 05:08 disability 05:09 and disability arts that i have met she 05:12 is a mentor an incredible mentor and an 05:14 incredible friend to me 05:17 um and i am very very happy 05:20 to have her and share her with all of 05:23 you 05:25 so without further ado i present the 05:28 current director of disability arts 05:33 thank you hi 05:36 everyone it's lovely to see you here and 05:38 thank you for coming out 05:40 on a friday because it's usually friday 05:42 we start to wind down for the weekend 05:44 and whatever 05:45 first of all can you hear me okay and 05:48 can you follow my wonderful accent 05:51 okay i 05:54 um was going to do a work up around 05:57 disability arts as a tool for 05:58 empowerment purely on that and then when 06:00 i saw the theme 06:02 of um motherhood and all the great 06:05 pieces of work that are going on i 06:06 thought 06:07 i'm going to investigate how to put this 06:09 into the context 06:11 of what this whole um sessions the 06:14 series of works being about 06:16 so i found a lot of discoveries and i 06:18 want to be able to share them with you 06:19 and 06:20 ask you to ask questions about all this 06:24 as we go through the presentation 06:25 i've got i just want to be clear to 06:28 anyone who's got any access requirements 06:31 you're okay no one needs me to describe 06:34 any of the images 06:35 you have but you can hear me through 06:38 your bluetooth thing called 06:39 yes i do not need you to transcribe any 06:42 images for me thank you 06:44 i normally have a transcriber working 06:46 with me but i couldn't get 06:47 anyone because it's now 20 to 10 at 06:49 night for me here 06:51 and no one was going to work that day 06:52 for me i thought i'd really won that one 06:54 but anyway 06:55 so that means i'm not going to hear your 06:57 questions that well 06:58 um i mean if we stay quite tight i'll be 07:01 able to put your face up and 07:03 watch and ping you i don't know if 07:05 you're that familiar with the zoom 07:07 protocols 07:08 um one thing that um i've just been 07:11 asked to remind you of is this has been 07:13 recorded 07:14 so if you don't want your face to be 07:15 seen please put your camera off 07:18 and frown wants to keep a record of all 07:20 of this stuff that's going on 07:22 um i will be asking you to use the chat 07:25 if that's okay as a little tool we go 07:28 through i've got one real exercise but 07:30 any questions that come up if you don't 07:32 mind putting them in the chat 07:33 because it'll keep the flow and it'll be 07:36 helping my access requirements 07:38 is that all right i'm really hoping 07:41 you're gonna enjoy this and i really 07:42 want you to dissect it 07:44 ask anything you want i'm going to 07:46 expose my heart 07:47 to you as a disabled person and a mother 07:50 and i just realized there's no images of 07:52 my children 07:52 in this talk which is very unusual for 07:54 me but then again 07:56 i just i don't need to always have my 07:58 identity made by them 08:00 which can be something that we fall into 08:02 a trap being 08:04 okay so i'm going to share the screen 08:06 and start off with a powerpoint 08:08 presentation 08:09 and if you want to close your eyes for a 08:10 minute because it's not going to be full 08:12 screen and i want 08:13 to hide some of the images i'm going to 08:14 present so close your eyes for a minute 08:16 i'll tell you where you can open them 08:18 okay don't open them yet um 08:21 come on wesley the size show 08:24 the things over it that's why i'm not 08:26 seeing it don't open the eyes yet 08:28 come on yeah you can open your eyes now 08:31 okay you got 08:35 these are my names i have now root fabi 08:39 i was a ruth gould 08:40 and i used to be a hair and so 08:44 i only got married last october 08:46 unexpectedly fell in love 08:49 after a long long marriage where i had 08:51 my three children 08:52 and someone who had just given up on 08:54 life really and i tried for over 20 08:56 years to make that work 08:57 but i went from being a hair which is a 09:00 sign for her 09:01 to a gould and now i've got an extra 09:03 syllable i'm a fabby 09:05 and i love being a roof fabi because i'm 09:07 fab it's fantastic and my lovely husband 09:10 is 09:10 absolutely amazing i'm going to give you 09:12 some images of me throughout my life 09:15 okay this is me when i started doing my 09:18 artwork 09:19 i can't believe i had a neck 09:22 but anyway has our lives changed it's 09:25 quite phenomenal 09:26 but one of the things i was so insecure 09:28 as a child 09:30 quite a lot of abuse in my background 09:32 through my mother of all things 09:34 but it's fine because i've learned to 09:37 forgive and move on but when i had my 09:40 first child 09:41 it started my activism i'm gonna show 09:44 you a picture 09:46 of just as he was born 09:50 um the umbilical cord is still attached 09:53 i don't know if you can see that 09:54 that's alex oh 09:58 it says free meeting we're gonna end 10:01 um is that a problem you've got your mic 10:04 up will it 10:05 cut it off are you going to be all right 10:10 it i'll keep going 10:13 if we get well i'm just worried because 10:16 i know 10:17 zoom you have a free 40 minutes if you 10:19 haven't 10:21 are you going to be okay is this going 10:22 to be all right and you want to 10:24 take your mic off 10:29 i'm just all right we're going to be 10:30 okay um sarah 10:32 can you figure out why are we going 10:36 why are we um on a freeborn 10:39 yes we're not in a free one this is 10:41 definitely a paid subscription 10:43 i mean okay but just keep you do that 10:46 back there and i'll keep going 10:48 if it looks like you've got a problem 10:49 you may need to come out and get another 10:52 um zoom i've got a zoom account so i can 10:54 put it on mine 10:55 but anyway having my child was the 10:58 pivotal moment that made me start to 11:00 believe i could live 11:02 i had a right to be alive and 11:05 one of the biggest things that happened 11:06 to me when i was 16 weeks pregnant with 11:08 him 11:09 i went to see my obstetrician for the 11:11 first time 11:12 and he looked through my notes and it 11:15 was quite intimidating he had a lot of 11:16 student doctors around him 11:18 some nurses so as a 22 year old 11:21 it was really quite worrying to be in 11:23 that environment 11:24 he examined me uh yeah your baby is at 11:27 that time 11:28 and um they looked at my notes but oh 11:31 i see you have hereditary deafness 11:33 within your family 11:35 i think you'd be highly irresponsible to 11:38 continue with the pregnancy 11:40 it shocked the life out of me and i 11:44 i was a mouse i didn't really say 11:46 anything i was 11:48 looking at him and for something from me 11:50 which 11:51 was like a core almost a lioness sort of 11:54 comment came out 11:55 which i would never have done in my life 11:57 before then i just went 11:58 well i'm deaf and i don't think you 12:00 should have killed me 12:02 and he was really taken aback by that 12:04 and i had quite a horrible time 12:06 with the rest of the pregnancy but i 12:08 wanted this child i've got into the 12:10 whole thing about 12:11 a natural birth no drugs have the 12:14 umbilical cord still attached and 12:16 not cut straight away all the things 12:18 that are standard now but back then in 12:20 1981 12:21 i was a [ __ ] hippie pain in the ass 12:24 to them ooh can i swear in this 12:27 format is that all right yes we hope you 12:30 will 12:31 okay all right anyway 12:35 there's me on my wedding day last year 12:38 i'm really excited to be married 12:40 i'm living in a new country a new 12:42 challenge with a new organisation 12:44 and my life has moved on i've had two 12:46 more children 12:47 after alex who you can see in that 12:49 picture 12:51 i managed to get my master's um i didn't 12:55 have a first degree 12:56 um so i was quite um pleased with myself 13:00 to be able to get that that's my son 13:02 standing next to to me 13:04 um he's now 39 13:07 anyway it doesn't matter how life goes 13:10 on but 13:11 here's me in another um 13:14 rendition of my life so i've tried to 13:17 show you different stages of my life 13:19 i'm very overweight there because i just 13:21 come out of hospital after being told 13:23 i didn't have long to live i've got a 13:25 lung disease 13:26 i'm i'm more swollen with the steroids 13:28 that's me and my oxygen 13:30 and i'm actually doing a sign dance 13:32 performance too 13:33 i will survive and it went down really 13:36 well 13:37 but um i really like to use and 13:39 experience the things i go through 13:41 to the max so that's a little bit about 13:44 me 13:45 um i just wanted us to think about 13:48 disability and motherhood and disabled 13:51 people 13:51 being mothers that shocked me to my core 13:55 when i was pregnant and got told i'd be 13:57 irresponsible to continue the pregnancy 13:59 i also had another child when i was 40 14:03 and again i was told get it tested you 14:06 can't have it if it's got down syndrome 14:08 and it shocked me what the messages are 14:10 out there 14:11 and i'm just seeing the pictures here uh 14:14 are discovering now keep moving it 14:16 and women are more likely than men to 14:18 become disabled during their lives 14:20 due to part in part to gender bias in 14:22 the allocation of scarce resources 14:24 and in access to services so women in 14:27 disability 14:28 approximately 300 million women around 14:31 the world 14:31 have mental and physical disabilities 14:35 women constitute 75 percent of the 14:38 disabled people 14:39 in low or middle income countries women 14:42 with disabilities comprise 10 percent 14:45 of all women worldwide now we're not 14:48 representative 14:49 when it comes to jobs places authority 14:53 and in being with us i um 14:56 oops i think i may have missed something 14:58 there oh no i haven't 15:01 okay this is the image we will kind of 15:04 if any of us have done the arts would 15:06 know very well 15:07 and the beggars by peterborough a 15:11 the elder disability has been around 15:14 since the start of mankind being on this 15:16 planet 15:17 sorry that was the wrong human kind 15:20 sorry 15:20 the feminist slip from me then um so we 15:23 need to 15:25 just have a look at our history so i'm 15:27 going to give you a little talk on 15:28 something we call a social media ruth 15:31 i'm sorry i'm going to interrupt you for 15:32 one second because we are trying to 15:35 figure out 15:35 how to um extend this meeting if 15:39 we are all all of a sudden cut off 15:42 please 15:42 just just hang tight we will send you 15:44 another zoom link 15:46 um right so we can give it on with it 15:49 you don't want me to give you my zoom 15:51 link um 15:53 i i um we'll figure that out in a little 15:56 bit i think that 15:57 um we should should be able to do this 16:01 this is fun okay i'll leave it here 16:06 yeah i it the thing is is i made you the 16:08 co-host now ruth so if you're on your 16:10 zoom 16:11 account with um disability arts 16:14 it might not shut down um this 16:18 i don't want me to try it again did you 16:20 say 16:21 no no 16:25 no don't sorry jonah put something in a 16:26 chat to me 16:28 it's it's still working you want me to 16:31 carry on 16:34 sorry about this yes please carry on so 16:38 i can carry on with my powerpoint yep 16:40 okay do you know my powerpoint wasn't 16:43 that good because it was a very 16:45 important slide out 16:46 and that was my intro slide i'm going to 16:49 just put this up 16:50 um because i wanted you to see 16:54 oh no it's going on to the next one 16:56 right i'm going to move you 16:59 okay i want disability arts 17:02 there's a talk a tool for empowerment 17:05 and this is me 17:06 how i describe myself apart from the 17:09 fact i am also 17:10 a disability agitator activist 17:13 artist programmer etc but i want to 17:17 to talk to you today on this disability 17:19 arts tour for empowerment 17:20 from a disabled deaf neurodivergent 17:24 long-term chronically ill mother's 17:26 observations 17:27 so that's what the talk of this is all 17:29 about i'm going to get back to the um 17:35 i thought they all sorted with the 17:36 powerpoint but obviously i didn't 17:38 practice well enough 17:40 so we're up to peter bruegel and the 17:42 impression we have of 17:43 disabled people around up to the start 17:46 of the industrial revolution disability 17:48 was 17:49 part and parcel of community we still 17:51 see that 17:52 in some of the more the the less 17:55 wealthy countries around the world where 17:57 disability is just embraced as part of 18:00 that's what happens we're used to it the 18:03 research that's going on in 18:04 in the uk now is showing up to eighty 18:06 percent of communities were disabled 18:08 back up to the industrial revolution 18:11 there's so many 18:12 i've also been around for so long but 18:14 you wouldn't think it because of 18:16 the world we live in today okay i just 18:19 wanted to share this brilliant image of 18:20 her 18:20 i think she's a filipino lady with a um 18:23 a baby 18:24 so disabled people can be mums if 18:28 i move this is that okay for you yeah 18:31 i'm putting it on the bottom this is a 18:33 u.s cystics i found around disability 18:36 mother uh motherhood around 36 million 18:39 women in the us 18:40 have disabilities and the number is 18:43 growing 18:44 about 44 to those aged over 60 years or 18:47 older 18:48 are living with a disability and 18:51 researchers show that this grows with 18:53 every year you get older 18:55 so there is a notion that you're either 18:57 disabled or you're not disabled yet 18:59 because if you live long enough you will 19:01 become disabled 19:02 the most common course of disability for 19:05 women is arthritis 19:06 or rheumatism and i wonder whether 19:09 that's got something 19:10 to do with what we have to lift around 19:12 our lives carry around our lives 19:14 etc it's a really interesting fact that 19:16 could be unpicked 19:18 um but disabled deaf women are 19:21 everywhere 19:23 and we don't see them really being 19:24 celebrated that much 19:26 we don't see it as a normal thing an 19:29 ordinary everyday thing 19:30 and i wonder why that is i don't know if 19:33 any of you have ever seen this 19:35 sheet i'm aware there's some um mistakes 19:38 in it so 19:39 forgive me for that but my friends are 19:42 wheelchair users where it's an obvious 19:44 impairment 19:45 they get all sorts of stuff put into 19:47 their lives 19:49 um you know you're too pretty to be in a 19:51 wheelchair 19:52 do you need help you're a little and i 19:55 i just want to be able to have a little 19:57 talk around the room put things in the 19:59 chat 19:59 if that's right the labels that you 20:02 think identify who you are 20:04 okay so we've got the chat open so start 20:07 putting labels in 20:10 anything that you feel from a disability 20:12 perspective or just for a woman's 20:14 perspective 20:14 what are the labels that around what the 20:16 phrases that go with your life 20:19 got anything i read them out and you say 20:23 sorry i can't get you to shout them out 20:24 i'm probably going to get them wrong if 20:26 i do that 20:27 so 20:31 i i can be called the mouthy scouser 20:34 liverpool people get caught scouses 20:36 because of a stew that comes from norway 20:40 anybody else got anything here we go 20:43 right 20:43 aggressive or interesting asian american 20:47 korean american woman 20:49 woman artist empath femme white queer 20:52 great any other things 20:55 anything around disability in there 21:01 four eyes what's wrong with you ugly 21:04 that's awful now i don't know what c 21:08 ptsd is you are not deaf because you 21:11 speak of course 21:14 yeah i had that with my hearing dog you 21:16 speak how can you have that you're not 21:18 deaf 21:19 stupid yeah it's horrible how how often 21:22 that we can be called those things 21:24 ah complex post oh gosh i'm sorry about 21:27 that that's hard um 21:30 but is that are those things what really 21:32 are your identified 21:34 things that identify you i want you to 21:36 put something really positive a phrase 21:38 or a word 21:40 that really is you what's in here about 21:43 you 21:44 that you know is true about you 21:47 introvert optimistic 21:52 any other resilient that's a great one 21:56 growing yeah 22:00 yeah survivor 22:04 some really empowering words there right 22:06 i'm going to go back into the show 22:08 screen and we're going to go back into 22:11 looking at some of 22:12 the other things about about words and 22:14 identity one of the problems around 22:17 disability is your impairment or on its 22:20 own a bit slow 22:22 often can actually determine who you are 22:26 uh how people see you there's a woman 22:29 we used to work with um she's now passed 22:32 on 22:33 um a wheelchair user and this is what 22:36 people would say 22:38 about her when they saw her performing 22:40 oh it's 22:41 triumph over tragedy they're not just 22:43 something that's uh 22:44 common within america brave courageous 22:47 special amazing well why do we do that 22:51 around disability why can't we just and 22:53 ordinary because what you often get and 22:56 i don't think this lady was the case 22:58 is um they can be awful but we'll still 23:00 go oh 23:01 because they're standing in front of 23:03 people or singing in front of people 23:05 we don't say the truth we over patronize 23:08 and we do things which are not really 23:10 going to help 23:11 so in the chat i want you to write out 23:14 any words or phrases you know about 23:16 disability now 23:18 things you may have heard in the 23:19 playground things i hope haven't been 23:21 said to you but that we did have a four 23:22 eyes there before which is awful 23:24 but i want you to write in the chat any 23:26 phrases 23:28 that you think are around disability i 23:31 always ask people to sort of get 23:33 the demons out let me do this 23:35 differently abled 23:36 that's an interesting one is that 23:39 something common in america 23:43 yep deaf and dumb really still 23:47 deaf and dumb 23:50 people would actually our law or 23:51 disability discrimination act 23:53 can actually take you to court for 23:56 injury to feeling 23:57 and that includes the terms of use 23:59 [ __ ] 24:00 that's a really big one that yeah i um 24:04 i was thought i was [ __ ] until i got 24:06 to the age of six 24:07 and the teacher suddenly went oh i think 24:10 she's deaf 24:11 i don't think there's a learning 24:12 difficulty there um and 24:14 sure enough that's when i got my my 24:16 hearing aids i wasn't deaf 24:18 but those terms can really take over 24:21 your life 24:22 and determine how people feel about you 24:24 and we need 24:25 to actually look at things that can stop 24:27 that disempowering 24:30 dehumanizing that these phrases do 24:33 so why don't we see disabled people and 24:36 automatically think 24:37 wife mother translator focusing a 24:41 friend translator is a big thing where i 24:43 live now in wales because 24:44 we're really trying to reclaim the welsh 24:47 and 24:47 welsh is a traditional language for 24:50 britain 24:51 and when we got the anglo-saxons 24:53 invading us 24:54 the welsh were pushed into the farthest 24:56 reaches of the land 24:57 and it's been there for thousands of 25:00 years really in the way it's developed 25:03 but it was bought up until about the 25:05 1950s 1960s 25:08 and if children were caught speaking 25:10 welsh in school 25:11 they'd have a board put over them with 25:13 wn on it 25:14 welsh not so there's a lot of reclaiming 25:17 the language now 25:18 in wales which is very akin to 25:20 disability and deaf culture 25:22 how identities have been really much 25:25 around with 25:26 and stopped i'm having to use that thing 25:29 on there i'm afraid because 25:31 my computer is not working properly 25:34 oh i hate doing that so sorry so i want 25:36 to give you a little quick history here 25:39 from the earliest of ages um 25:42 records have showed that society is 25:44 often true to disabled people as 25:46 outcasts 25:46 occurs arizona the greek founding father 25:50 around education etc 25:52 said get rid of imperfect children 25:54 ancient romans would throw disabled 25:57 and children under horses hooves have 25:59 blind gladiators fight each other 26:01 and even have dwarves fight women yet 26:04 disabled people 26:05 have always been around due to disease 26:08 and lack of medical intervention 26:10 and most of the time we're accepted as 26:12 part of a wider family new 26:14 unit until we got sad things of social 26:17 people pestilence and plague 26:18 when they're often made scapegoats or 26:20 evil people being disastered on 26:22 others i could go into the history of 26:24 them we haven't got time but it's 26:25 fascinating when you start to 26:27 to look at it but we see disabled people 26:29 prevalent throughout art 26:31 and there is a thing of having people 26:33 with restricted growth in 26:34 a lot of the courts across europe 26:36 particularly 26:38 and there's a couple more all of these 26:40 are by velasquez 26:41 which is quite interesting i wonder why 26:43 he really was 26:44 focusing on this so we know disability 26:47 has been around 26:48 but we there was a change in terms of 26:52 disabled people just being part of 26:54 communities suddenly being identified 26:56 and labeled 26:57 by what they had as people would put it 27:00 wrong with them so think the industrial 27:04 revolution disabled people began to be 27:06 institutionalized 27:07 because they could no longer but they 27:09 couldn't be seen as being productive 27:11 in the way the mass is industrialization 27:14 was taking over society 27:16 so for the first time we had 27:17 institutions being set up 27:20 based on impairment blind deaf crippled 27:22 usually led by the nice caregivers 27:25 within society often through church 27:28 um which is hard and people oops 27:32 with the enlightenment a more scientific 27:34 understanding was created about the 27:36 causes of impairment 27:37 so people started to experiment on 27:40 disabled people in these institutions 27:41 and we get a lot of 27:43 horror stories about actually what went 27:45 on it led to an increase in confidence 27:47 in being able to cure or at least 27:48 rehabilitate disabled people 27:50 but what was really interesting about 27:52 this time the 1800s 27:54 the eugenics movement grew in strength 27:56 in the wake of darwin's theory of 27:58 evolution 27:59 survival of the fittest um 28:02 mary jendy broke the mould as a woman 28:05 educator in the late 1800s in 28:07 the uk but she was a advent 28:11 eugenicist and in uh 1890 said that 28:15 children classes mentally handicapped 28:17 should be 28:19 this is horrible detained for the whole 28:21 of their lives 28:22 is the only way to stem the great evil 28:24 of feeble-mindedness in our country 28:26 so this thinking was coming on right 28:29 across 28:30 the um the world really in terms of how 28:33 disabled people 28:35 with an industrialization starting to be 28:37 a problem and we 28:38 we get these sort of adverts are very 28:40 much part of our history 28:41 i'm trying to put in you in a way where 28:43 you can actually put you up there 28:45 that's i mean when i'm moving you can 28:47 you see me moving you or you in the same 28:49 place 28:50 because i don't want to make you you're 28:52 just in the same place 28:53 okay forget what i'm saying then i've 28:55 got your pictures and i'm moving around 28:57 so 28:58 i can see the pictures thinking it's 28:59 blocking you so sorry about that 29:01 okay this is an advert that was um quite 29:04 well known 29:05 in britain um 25 years ago it was to 29:08 raise funds for 29:09 the research into motor neurone disease 29:12 and it's horrendous 29:13 as a mother it's horrendous to read this 29:16 i i find it hard to still read it even 29:18 though i've 29:18 been training on it for over 20 years 29:20 without coming to tears but 29:22 imagine your muscles have wasted away 29:25 but your mind is still active 29:27 you can't move you have to be dressed 29:29 and fed and you can't even talk 29:32 katie's mum has note in your own disease 29:34 now katie has a real doll 29:36 to look after it's surrenders it's 29:40 dehumanizing 29:41 it's saying you're trapped with an 29:43 active mind and a body but your child's 29:45 got 29:45 to look after you it's putting all the 29:48 horrors there 29:49 with the way it's using the graphic of a 29:51 doll 29:52 not even human black and white spotlight 29:56 on 29:56 they never show someone like um stephen 29:59 hawking who had this disease 30:01 what he accomplished or other women 30:03 who've had this disease 30:05 they always paint the worst case 30:06 scenario with this disease 30:08 and that's very much what the charity 30:09 has done we call all this 30:11 the medical model of disability um 30:16 sorry about this i've just gone 30:19 yeah where the is a problem in society 30:22 impairments chronic illness are the real 30:25 difficulties 30:26 and it's caused by what's wrong with you 30:28 and how your body doesn't work and it's 30:29 all a negative 30:31 but we've got a new thing that we've 30:32 worked in with disability arts called a 30:34 social model of disability 30:36 you may already know this i'm sorry if 30:37 i'm going over old brown with some of 30:39 you 30:39 but we say society disables us 30:43 society puts the barriers in that stops 30:45 us having the same opportunities as 30:47 other people 30:48 and i'm not sure if any in the room have 30:50 had impairments as children 30:52 but often i was go to a deaf school 30:55 you're not able to be educated 30:56 that was the whole message my mum 30:58 wouldn't let that happen because 31:00 i don't really think she was that 31:02 bothered about me and 31:04 about my own education development it 31:06 was more she couldn't cope with the 31:07 stigma 31:08 of it she was embarrassed and didn't 31:10 want a deaf child or even though she 31:12 became a hearing aid where herself as 31:14 she got older so 31:16 we need to actually look at those sort 31:18 of structures 31:19 thinking in society which stops many 31:22 disabled people 31:23 really knowing they are not the problem 31:26 that we have systemic 31:27 institutionalization 31:29 on issues that stop us take playing a 31:31 full part 31:33 and i love this picture of a mother 31:36 with joy with her disabled young son 31:40 we don't see enough of them well if we 31:42 do they're using documentaries or what 31:45 there's another one my son who is older 31:48 i breastfed for about 18 months 31:50 a deaf woman talking about what she did 31:52 as a mother 31:53 people don't want to hear about this 31:54 you're not supposed to have children if 31:55 you're deaf or disabled 31:57 a mother pushing her baby in her 32:00 wheelchair 32:00 with a baby at the front of a wheelchair 32:02 an adapted wheelchair 32:04 so she can be a full mom it's lovely to 32:07 see these images but 32:08 we hear so many horror stories of 32:10 disabled women 32:12 and being told they're not fit mothers 32:15 people having people 32:16 their babies taking off them one of my 32:18 closest friends is um 32:20 blind and she was in a park with a guide 32:22 dog 32:23 a brand new baby in a pram and a toddler 32:26 now most blind people can 32:27 have some sort of site so she can walk 32:30 and and 32:31 get around um quite independently with 32:34 her dog 32:35 and um two women went past very loudly 32:39 spoken going 32:40 oh what a shame for those poor two kids 32:43 they're terrible she's her their mother 32:45 i mean 32:46 awful things but said very publicly 32:49 we've got to look at some dis to role 32:53 models and 32:54 one of the earliest role models i think 32:55 everyone every woman who's in the arts 32:57 loves frida kahlo so i thought i'd just 32:59 put some interesting quotes there about 33:02 how she felt about her impairments i'm 33:04 assuming you know about her 33:05 so i'm not gonna talk more about her um 33:08 but 33:09 i love this because it actually puts it 33:11 into perspective about 33:12 how we live with our broken bodies 33:15 there have been two great accidents in 33:17 my life one was the trolley 33:19 and the other was diego diego was by far 33:22 the worst 33:24 i think that's fantastic um but her 33:27 impairment she accepted it 33:29 i paint my own reality the only thing i 33:31 know 33:32 is that i paint because i need to and i 33:34 paint 33:35 whatever passes through my head without 33:37 any other consideration 33:39 she's an artist and she painted about 33:41 herself 33:42 and the things that were important to 33:44 her life and i felt this last quote 33:47 painting completed my life and here's 33:49 some pieces of work about 33:51 because she wasn't a mother but she 33:53 tried to be a mother 33:55 she had a number of miscarriages and she 33:58 has painted some images about 34:00 her uh lost children and this is one 34:04 but other things that she does really 34:06 just says it in her art and i've got a 34:08 few images i just want to show 34:10 the things she had to do with the corset 34:14 multiple operations uh times she 34:16 couldn't lay out a bed 34:18 um it's great back here in the 1930s 40s 34:22 she was 34:22 pushing herself in a wheelchair picture 34:26 a lot of people would have tried to show 34:28 no i will not accept that i will show 34:30 them how 34:30 fit and healthy i am she was showing 34:32 truth 34:34 that's so brave and i i love this image 34:38 where she's got breast milk coming out 34:40 of the woman's 34:42 breast and diego that is like a child 34:46 and it is it says so much about 34:49 what was going on with the woman so to 34:51 me though we don't say 34:52 it's disability art it was the start of 34:56 it 34:56 and she has influenced people so much 34:59 but disability arts the tool for 35:01 empowerment and i'm gonna 35:02 try and whisper it so i don't lose you 35:04 too much with the time it's not that 35:06 long i know 35:07 but you've seen this nothing about us 35:09 without us 35:10 it's a big mantra that the uk picked up 35:12 from america 35:13 when you started to do your big marches 35:15 with disability rights 35:17 and we picked up on to that in a big way 35:20 but disability arts was something that 35:22 came from the protest 35:23 in terms of people articulating pictures 35:26 like this 35:27 to make end points about our lives 35:30 firstly our voices need to be heard 35:32 and you shouldn't be doing anything 35:34 without talking to us that 35:36 is the consequence of the medical model 35:38 everything was done to us 35:40 and this is someone taking that very 35:43 iconic image 35:44 into a disability arts um image the 35:47 disability arts movement 35:49 we demand rights not charity they're 35:51 doing a lot of protests 35:53 um i love you've got photographers 35:56 painters 35:57 um people the trouble with normal people 36:00 is they 36:00 don't exist and that is so true 36:04 we we're not really it's not really 36:06 normal we're all different 36:09 okay so definition of disability arts 36:11 are you all okay 36:12 you want to give me a thumbs up you know 36:14 i'm not making you fall asleep or 36:15 anything i'm hoping this is 36:17 interesting but we're getting to the 36:18 juicy bits in a moment disability art 36:21 or the arts is an uh or disability arts 36:24 is any art theater fine arts film 36:26 writing music or club 36:28 that takes disability as a theme or 36:30 whose context relates to disability 36:32 so disability can affect anybody but 36:35 there are some die-hard 36:37 activists who will say disability arts 36:39 is a concept 36:41 which was developed out of the 36:42 disability arts movement in the 36:44 disability arts movement disability arts 36:46 stood for 36:47 art made by disabled people which 36:49 reflects the experience of disability 36:52 to make disability art in disability 36:54 arts movements is conditional 36:55 on being a disabled person as i've been 36:58 working in the sector for nearly 30 37:00 years 37:00 i actually think it's moving on because 37:03 more and people 37:05 more and more people are starting to 37:06 intune to disability art so i'm going to 37:08 give you some examples 37:09 of women i know have done great 37:12 disability arts 37:13 susan austin creating a spectacle as a 37:16 wheelchair user she was 37:18 fed up with how people used to speak to 37:19 her and not see her as someone who was 37:22 sexy 37:23 and energetic and free so she's managed 37:26 to create 37:27 an underwater wheelchair um 37:30 contraption um where she's been able to 37:33 go this was in the dead sea 37:34 get these amazing images taught um 37:38 taken about to work she has now 37:41 developed a contraption which is 37:42 allowing 37:43 her to fly in a wheelchair she's got 37:46 wings on it and it actually is 37:48 flying it's quite scary but she's 37:51 determined to 37:52 pervert how people see her as a disabled 37:56 woman 37:56 and i think that to me is the crux of 37:59 what we can do in disability arts 38:01 how it can empower us as women there's 38:04 another image of 38:05 someone who's a dear friend i don't know 38:07 if um 38:08 you ever had these in america but we had 38:11 them a lot 38:12 you can't quite see this but it was just 38:14 help the [ __ ] society 38:16 we used to have the [ __ ] society and 38:19 um 38:19 these little creatures or guide dogs are 38:22 blind people 38:23 um outside this with a slot in the head 38:26 for you to put money in 38:28 here's catherine aronello a disabled 38:31 woman 38:31 who is well sadly she died last year 38:35 she's someone i've programmed a lot in 38:36 dadavest 38:37 she was just absolutely 38:40 uh amazing in how she challenged the 38:43 perceptions of how she saw herself as a 38:45 disabled woman 38:46 she did a lot of video films so if you 38:49 look it up 38:50 you you'll see all this straight off how 38:52 she's subverting 38:53 time and time again how people view her 38:56 but as i was looking at these i was like 38:58 where are the women and motherhood i'm 39:01 just going to show you two more 39:03 tanya robbie um a great portrait painter 39:05 she's now 39:06 got her work in um trafalgar square and 39:09 the national portrait gallery 39:10 she's actually done pictures of so many 39:13 disabled people across the uk and this 39:15 is another woman 39:16 deborah williams who she's painted she's 39:19 not doing that one here obviously i'm 39:20 just put two pictures together 39:22 deborah williams um i commissioned her 39:24 to do 39:25 a program on a performance on the life 39:28 of harriet tubman 39:29 um about 15 years ago i i just 39:32 honored her because it's actually 39:34 disability month in 39:35 the uk i don't know if you've got that 39:37 been celebrated here 39:39 but i i nominated her and she wrote back 39:41 and said 39:43 i was one of two people who commissioned 39:45 her to do a piece of performance 39:47 and it just broke my heart because 39:50 there's an issue around black women 39:52 as well so there's lots of issues and 39:54 complexities about us being women 39:57 and this i don't know if you've come 39:59 across liz carr 40:00 um i'm very proud of liz because she did 40:03 the very first drama course with the 40:05 organization i used to run 40:07 and then i debuted the very first 40:09 festival i put together in 2001 and 40:11 she's just gone on 40:13 to do the most incredible work and this 40:15 one in the middle 40:16 she did sue assisted suicide the musical 40:20 and the fact that people think this is 40:21 disabled people just want to die 40:23 our lives are so not worth living just 40:26 take us 40:26 to the exit and let our life be over 40:29 it's 40:30 shocking what she came up with but she 40:32 agreed it's one of the best pieces of 40:34 work that she's ever done 40:35 um even though she's been in quite a lot 40:37 of american films of late 40:39 she's really getting quite well known um 40:42 but 40:42 this is probably one of the most famous 40:45 of 40:46 women of motherhood in disability arts 40:49 and the irony is 40:50 the sculptor is not disabled it was 40:52 marquin 40:54 but on in trafalgar square we've got all 40:56 these monuments of these men 40:58 half of them we haven't glue they are 41:00 but there's an empty plinth 41:02 and what they do is they allow people to 41:04 put art on it 41:05 and alison the lapper was done as a 41:08 marble statue by mark quinn 41:10 it's about 15 20 for high and it's hair 41:13 pregnant 41:14 a beautiful image the outbreak force in 41:17 the uk was phenomenal 41:18 from very well known people saying it's 41:20 disgusting it's a monstrosity 41:22 we don't want to see a disabled person 41:23 on the plinth yet 41:25 if you look up here that's nelson he had 41:27 one eye one leg and one arm 41:29 but they wouldn't think of him as 41:30 disabled what is it that people go on 41:33 about with these things 41:35 this is paris who was a beautiful little 41:38 boy 41:39 and i actually worked with there we um 41:42 mark put the statue to a small 41:45 about six foot high we had it in an 41:47 exhibition in liverpool 41:49 um two years after daba fest first 41:51 launched 41:52 um we had it in the victorian room with 41:55 all these incredible statues of 41:56 victorian 41:57 gods looking beautiful with all these 41:59 pitch sculptures of disabled people 42:02 and the contrast was amazing so i met 42:04 paris he was lovely 42:06 and this is going to get you because it 42:08 gets me last year 42:09 paris killed himself and when it went 42:12 through the news 42:14 he was just totally bullied for having a 42:17 disabled mum 42:18 and that has just broken a lot of people 42:21 because 42:22 she was a brilliant role model the 42:24 pictures you see them together as he 42:26 grew up 42:26 beautiful he's always laughing always 42:28 you know but when he got 42:30 to his as middle early teens 42:33 he just started to lose it used to beg 42:35 him not to come into parents night 42:37 because he'd get so abused by his 42:39 friends 42:40 so we've got some big issues there about 42:42 how disabled women are seen in public 42:44 about also our roles as mums 42:48 there's another mum i was really trying 42:50 to think of mums 42:51 and she's this is brilliant it's liz 42:53 bentley 42:54 and she's done this mask the quona virus 42:58 mask 42:58 so she's playing on the corolla virus 43:00 the mass thing is a big issue 43:02 she is just a prolific writer performer 43:05 she plays a ukulele as well 43:07 i've had her doing lots of work for me 43:08 over the past bit 43:10 she writes real to the heart stuff about 43:13 women 43:14 and what women go through and i thought 43:16 i'd just get a bit of a writing because 43:17 i thought this was really interesting to 43:19 look at 43:20 international women's day on the eighth 43:22 always brings up 43:23 difficult stuff for me because my dad 43:25 wanted me to be a boy 43:27 big issue for some of us my sister would 43:29 have been called john winston 43:31 so i guess i would have been called john 43:33 winston but if she had been a boy i 43:34 would remark something 43:36 when i used to work at maurice stokes 43:38 abortion clinics women came from all 43:40 over the world 43:42 nearly at that 24 week mark it is still 43:45 a tragedy to have a girl in many parts 43:47 of the world 43:49 you know she's seen raw life as a woman 43:50 and she's not afraid to say it 43:52 but these big questions we need to ask 43:55 them and 43:56 what is it that happens to us as women 43:59 um 44:00 on the focus around disability in this 44:03 this is a quote from a um paper i'll put 44:06 a document together with all these links 44:08 on so you can have a good look at them 44:10 women are expected to aspire to norms of 44:12 femininity 44:13 that include ideal motherhood where 44:15 mothers are positioned as ever available 44:17 ever nurturing providers of active 44:20 involved in expert mothering indeed 44:22 being a caregiver is a master status for 44:24 adult women in modernity 44:26 while this may be the case for all women 44:28 mothers who are disabled can have 44:30 more complicated relationships at the 44:33 ideal motherhood than others 44:35 because they are perceived as these are 44:36 asexual 44:38 and inappropriate to the role of 44:39 motherhood or conversely because they 44:42 are seen as sexually victimized 44:44 and at risk this comes from a paper by 44:46 claudia malek reader 44:48 performing motherhood in the disabled 44:50 world 44:51 i see documents i see papers i don't see 44:54 the art 44:56 we're missing there's something there 44:58 that doesn't allow disabled women 45:00 to really make work from their 45:02 perspective there is also a perspective 45:05 i've seen 45:05 a commonality of people talking about 45:07 mummy issues i've got hundreds of mummy 45:09 issues 45:10 but a lot of people make a lot about him 45:13 and this 45:13 is um you may know terry galloway and 45:16 donna nutt 45:17 they're based in um tallahassee and 45:21 they both set up the house um the mickey 45:24 mouse club 45:25 uh their work is phenomenal i brought 45:28 them together 45:29 um in liverpool twice to work on this 45:32 piece of drama 45:33 and that was just a clip of them um 45:36 talking about it but this is 45:37 what it was about it featured liz carl 45:40 julie mcnamara 45:41 and three american women and one 45:43 american man 45:44 and this is terry galloway um she's a 45:47 deaf woman who got a cochlear implant 45:49 and did a piece of work on 45:50 what it meant to have a cochlear implant 45:53 but they did a piece of work 45:55 on what is um you may be familiar with 45:58 this 45:59 the ugly laws that were around in 46:01 america in some states that if you're 46:03 disabled you're not allowed to be out in 46:05 public 46:06 so they created a piece of the less show 46:08 called the ugly girl in 2014 46:11 and there's a quote from it the psycho 46:14 the psychotic surreal musical is played 46:16 out by a dysfunctional family in front 46:18 of the corpse of their dead mother 46:20 i was a dead mother i i was writing a 46:22 play out to come in and just go 46:24 i [ __ ] found it i [ __ ] found it 46:26 and then i've heard as and died 46:27 and i'm just there the whole time they 46:29 did this late it was great fun 46:30 um but um it included a common mix of 46:34 melodrama 46:34 punch and judy vaudeville and english 46:36 musical writer and performer terry 46:38 galloway jefferson snide 46:40 recently received a cochlear implant the 46:42 first minutes after implant all she 46:44 could hear was a frightening cacophony 46:46 it made me want to tear my head off i 46:48 was terrified until my 46:50 audiologist picked up on a child's toy 46:53 a bell that when she rang it made a 46:57 piercingly joyful trill my brain seemed 46:59 to turn around in my school 47:01 and fasten on that sound and when it did 47:03 i came to two realizations 47:05 i was going to love hearing and i was 47:07 going to write a musical 47:09 and so she has think about cochlear 47:11 implants they're not 47:12 they're not um they're just another 47:14 hearing aid you're not completely cured 47:16 and a lot of people think things like 47:17 that does that 47:18 happen to people but women writing about 47:21 the lived experience of disability 47:22 we see things like that happening i love 47:24 this mummy image you know fighting over 47:26 your baby 47:28 it's um but that's what we seem to get 47:30 those sorts of stories 47:31 we don't see the beautiful stories 47:34 that many of us as disabled people can 47:36 have and 47:38 this i want you to think about because 47:41 it really gets me it's a down syndrome 47:43 mum 47:44 and it's beautiful but most people with 47:46 learning disabilities 47:48 in the uk it's something like 69 47:52 have their child taken off them at birth 47:54 they 47:55 can do nothing about it they're not 47:57 allowed to be mothers 47:59 they're not allowed to be taught to be 48:00 mothers and 48:02 some people their mothers and fathers 48:04 will get their sterilization order on 48:06 them 48:07 we have a real problem here and this 48:09 piece i'm going to talk about now is 48:10 probably 48:11 the most poignant piece of motherhood 48:14 i've ever seen 48:15 and it came from the learning disability 48:17 community it's called mere 48:19 daughters of fortune from minor gap 48:22 theatre company 48:23 um it's a beautiful play 48:26 about being a mom being a parent and 48:29 nerd and disabled 48:31 i like the fact that mind the gap like 48:33 to ask people what they think about 48:34 their stories 48:36 and how did it make you feel the show 48:38 made me open up on a subject was very 48:40 personal to me 48:41 it made me laugh and cry at the same 48:44 time 48:45 and i hit a note that hasn't been hit 48:46 before parenthood 48:49 is a delicate subject especially for 48:51 people with a learning disability 48:53 i want to show you a little film now um 48:57 so i'm going to stop the show i get on 48:59 that gives you a bit of explanation 49:01 about 49:02 that story um and i just want to reduce 49:06 this a bit so i can get into it 49:07 um and i think you'll find it really 49:10 fascinating actually 49:11 and so it's only just over two minutes 49:13 long you're right for time 49:14 it's just on 30 and it's my last thing 49:16 really is that okay everybody 49:18 i think you'll enjoy this uh 49:22 where is it oh i need to actually 49:25 i'm going to take that out 49:28 i don't take that out put that up 49:32 here we go 49:37 are you actually all seeing this 49:41 hello my name is lee are you please call 49:43 me joyce 49:44 i'm the director of mia i remember last 49:47 year 49:48 one of the artists told me about a story 49:50 of her sister 49:52 who's also got lung disability going 49:54 through pregnancy and 49:56 parenthood the stories really opened my 49:58 eye because 49:59 they're with me there are lots of 50:00 different roles that 50:03 just bear with me i've done it wrong i'm 50:04 sorry 50:06 i'm trying to get this um on the full 50:08 screen 50:09 on oh it's so hard to do 50:12 sorry you're just gonna have to see me 50:15 do it really badly okay 50:16 where have you gone 50:20 okay there we go 50:25 hello my name is lynn are you please 50:27 call me joyce 50:28 i'm the director of mia i remember last 50:31 year 50:32 one of the artists told me about a story 50:34 of her sister 50:36 who's also got lung disability going 50:38 through pregnancy and 50:40 parenthood the stories really opened my 50:42 eye because i realized that there are 50:44 lots of hurdles 50:46 that this woman and the family needs to 50:48 go through that 50:49 non-disabled people don't have to 50:52 i am also thinking about being a mother 50:55 and 50:56 this is difficult decision for me to 50:58 make already 50:59 by creating mia i would like to tackle 51:02 this issue of 51:03 learning disabled people's parenthood 51:05 head-on rather than beating around the 51:07 bushes 51:08 hi my name is annie gray i mean i've 51:11 been 51:12 a bad man again for five years now and 51:15 it's my first 51:16 natural clothing of me i think 51:19 it's important because it does give 51:22 somebody this identity the challenges 51:24 but only disabled parents can face which 51:28 most parents not being disabled 51:31 in the first place wouldn't even know 51:34 true 51:38 oh no yeah oh sorry 51:42 it's okay you can't see it at all 51:46 now what we see is your slideshow but 51:49 it's not in 51:50 presentation mode it's still in the um 51:53 the individual slide mode oh dude did 51:56 you hear 51:57 did you hear any of it yes 52:01 sorry hold on sorry did you hear any of 52:04 it 52:05 yeah so you just didn't see it so 52:08 are you all right for time to start 52:10 again all started from where it is 52:12 i'm just worried about your time you 52:14 okay i share the screen put it back on 52:16 to the beginning then 52:18 let me here we go 52:23 can you see it yes can you see it 52:27 yes so mia is the case 52:30 take it back okay is this okay 52:34 yes you're always sorry i'm the director 52:36 of mia 52:37 i remember last year one of the artists 52:40 told me about 52:41 a story of her sister who's also got 52:43 lung disability 52:45 going through pregnancy and parenthood 52:48 the stories really opened my eye because 52:50 i realized that there are lots of 52:52 hurdles 52:52 that this woman and the family needs to 52:55 go through 52:56 that non-disabled people don't have to i 53:00 am also thinking about being a mother 53:02 and this is difficult decision for me to 53:05 make already 53:06 by creating mia i would like to tackle 53:09 this 53:09 issue of learning disabled people's 53:11 parenthood head-on 53:13 rather than beating around the bushes hi 53:16 my name is anna gray i mean i've been a 53:19 batman video for five 53:20 years now and it's my first national 53:23 song 53:24 of mia i think this 53:27 important because it does give some 53:30 insight into the challenges 53:31 that only disabled parents can face 53:33 which 53:34 most parents not being disabled 53:38 in the first place or didn't even know 53:40 existed 53:41 but it also just shows with some 53:43 positive things 53:45 i think it's been a bit useful for me 53:46 because it actually says perfect 53:48 challenge i where you have should i have 53:52 a child 53:53 all day would like to have a family just 53:55 because it got disciplined 53:56 doesn't mean that we have sex and have a 53:58 family one day 54:00 so mia is the fast moving contemporary 54:02 performance 54:03 so in it you wouldn't find the 54:05 conventional beginning middle and end 54:07 or a single narrative or one character 54:11 that follows all the way through 54:14 the game show i get to 54:17 make people laugh and be silly 54:21 it is episodic it is fast moving 54:24 and raw at the end we realized we've 54:26 joined a roller coaster 54:28 so hopefully you can come and join the 54:30 ride 54:35 oh dear 54:39 oops hold on get that off 54:43 right sorry getting back to it so sorry 54:46 did you get the whole gist of that i 54:47 didn't really spoil it for you did i 54:49 i mean it's a big subject and it's been 54:52 talked about from the learning 54:54 disability community now because of the 54:56 sort of 54:56 structures we've got in um the uk 55:00 some councils will actually put support 55:03 in place of disabled 55:04 learn disabled families or women or men 55:07 to 55:08 be able to continue looking after the 55:10 child and things but 55:11 others just would take them off them 55:14 automatically 55:15 and there's a lot of intervention into 55:18 down syndrome babies i don't know if 55:20 you're aware in iceland 55:21 there's not been a down syndrome baby 55:23 born there for the last seven years 55:25 and other countries it's the same and 55:28 yet when you 55:29 can see the richness of what people are 55:31 as humans 55:32 no matter where they are in their 55:34 intellect or the way they 55:36 they are in life our value system 55:38 doesn't value people 55:40 who don't think uh that academic way 55:43 who can't go through school in those 55:45 sort of ways 55:47 some of the political words that people 55:49 use are around the fact that 55:51 that and they have learning difficulties 55:54 or learning disabilities 55:55 deliberately putting it into an 55:57 education context 55:58 and it's they're they're not the one 56:00 with learning disabilities 56:02 really it's just the learning disables 56:04 them because they're not being taught 56:06 a way that can really help them reach 56:07 their potential we've got a long way to 56:10 go 56:10 but one of the things i really wanted to 56:12 look at at last year's database was 56:15 this issue around learning disabled 56:17 people being seen as sexual 56:18 people being seen as mothers and fathers 56:22 and being able to be families and we got 56:25 a group together of people and 56:27 it was really heartbreaking because 56:30 people were saying 56:31 they were sterilized as a child other 56:33 people were told 56:35 were given genetic counselling to be 56:37 told never to be parents 56:39 it wouldn't be fair because the bound to 56:41 continue that particular 56:43 um condition so those sort of darwinian 56:47 neogenesis theories are still there 56:50 in our education system particularly 56:52 poignant to young disabled people 56:55 a number of friend of mine friends of 56:57 mine who've been through the segregated 56:59 schooling system 57:00 we don't call it special when we're 57:02 working in disability arts because it 57:04 really isn't setting people up 57:06 to become contributing members of 57:08 society they are 57:09 all automatically given genetic 57:11 counselling at the age of 14 and 15 57:14 and about their impairments and whether 57:16 they will continue it with their 57:17 children 57:18 what kid are 14 and 15 wants to talk 57:20 about that you know i don't really know 57:22 that many 40 50 years 57:23 want to go i would have a child yeah 57:26 they just don't you're thinking about 57:27 other things their clothes their 57:29 boyfriend their girlfriend or whatever 57:31 but that sort of pressure is put on 57:33 people an awful lot within 57:35 the structures that we have we don't 57:37 support people 57:39 particularly people to be mothers and 57:41 yeah 57:42 it's a big issue because there's so many 57:44 stories i know but i'm not seeing the 57:46 art 57:47 and i feel doing this talk and thinking 57:50 it through 57:51 it's made me i've got to do something 57:53 about it so this talk for me 57:55 is the first way of looking at these 57:57 things i'm going to go back to the 57:58 shared 57:58 screen um because i want to 58:01 complete the the powerpoint if you don't 58:04 mind 58:05 um so we had mia i want to finish with 58:08 this one this is great 58:10 i don't know if any of you have ever 58:12 come across 58:13 this piece of work it's actually called 58:18 bad mummy it's a disabled woman with 58:22 spikes and leather 58:23 and it's to actually show we don't have 58:25 to fit into this nice caring lovely 58:27 images mummies 58:28 we can be radical and we can have 58:30 different bodies obviously we need to 58:31 keep the head 58:33 because i don't think we can function 58:35 without our head but i was really 58:36 pleased to bring this piece of work into 58:38 dadavest in 2012 58:40 through an exhibition called normal 58:44 um it's called nytnamal because it's 58:47 and in the netherlands which is an 58:49 ironically 58:50 contradictory country um i'll explain 58:53 why in a moment 58:54 um but neat normal if you say nietnamal 58:57 which obviously in english is not normal 59:00 it actually means cool you're different 59:02 you're brilliant you don't need no mao 59:04 and in our society it's like if you say 59:06 you're not normal 59:08 you're bound to get a bit of a comeback 59:11 what we did is to open this exhibition 59:13 there's all sorts of things in in the 59:15 exhibition it was is a really great one 59:17 to do 59:18 um i i've anna givers who's the actual 59:21 curator i put her link in a paper you're 59:23 gonna get soon 59:25 um what we did in liverpool would be at 59:27 the opening of the exhibition 59:29 the um it was brilliant because um we 59:32 had a 59:32 a train service virgin train service 59:35 like virgin train and planes 59:37 they gave us a first-class um carriage 59:40 from london 59:41 with all of the the reviewers and the 59:43 publicity people 59:44 and the key people in the arts to come 59:46 up and meet us at our station 59:48 in lime street in liverpool and what we 59:52 had is lots of disabled people 60:00 abnormal or something else it was 60:03 fascinating 60:04 um and then we analyzed the results 60:07 the scariest thing for me most men said 60:10 they were normal 60:11 about baton and i absolutely no problem 60:14 at all 60:15 women most women said they were 60:18 subnormal 60:18 or abnormal and i thought what a 60:22 what is that saying about the way women 60:24 are portrayed in our media today 60:27 we don't get the positive role models so 60:29 if women 60:30 who aren't mainly disabled women are 60:32 filling that can you imagine how much 60:34 more impacting it is on disabled people 60:37 um to want to be parents i'm going to 60:40 leave you with this before we just 60:42 finish with a bit of a talk 60:43 at the end of the day we can enjoy much 60:46 more than we think we can 60:48 from frieda kylo and i think we can 60:51 and we don't want people to keep telling 60:53 us we can't be mothers 60:55 we can't be um we can't look after 60:58 people 60:58 we can we can be everything if society 61:02 doesn't put all those pressures on us so 61:05 it was really interesting for me to 61:07 start to unpick it and realize 61:09 in all the disability arts examples i 61:11 could throw loads of stuff at you 61:13 but i wasn't seeing the mothering 61:16 conversations 61:18 and i really want to see that i i really 61:20 am 61:21 thrilled about mine the gap because 61:23 that's that came about because 61:25 the girl they were talking about was 61:27 pregnant she was having to go through a 61:30 almost uh an exam 61:33 been given a doll show us how you change 61:35 its nappy do you understand what this 61:38 means can you boil milk do you just 61:41 because she had learning difficulties 61:43 she was expected to not understand all 61:45 of this stuff 61:46 and it's scary actually that we have 61:49 those systems in place in the uk i'm not 61:51 sure what happens 61:52 in the states or if it changes from 61:55 some state to state but well done for 61:59 minor gap and making a big piece of 62:01 theatre about it 62:02 they do workshops as well and that it's 62:05 not just for disabled people we have 62:07 many non-disabled people going to see 62:09 their work but one of the things i love 62:11 is they do a lot of workshops 62:13 from the actors with learning disabled 62:15 people about 62:16 sexual activity and what equipment they 62:20 can use and 62:21 you know they can be gay there's they 62:23 can be trans they can be anything 62:25 but people still see limbs disabled 62:27 people particularly is 62:28 not really grown up and we have to 62:31 really change some of that thinking 62:33 and disability arts does that so going 62:35 back to the original start of the thing 62:38 to me mia is about empowerment 62:41 because it told a strong story and it 62:44 made people step up and think 62:46 on that conversation is still ongoing 62:50 all righty so i've kind of come to the 62:52 end of my presentation 62:54 i just want to try and get some 62:56 conversation going on 62:57 people um i'm sorry we had some 63:00 technical 63:00 hiccups but um i do appreciate you 63:04 listening and letting me go through it 63:06 but is anyone even got examples of 63:10 of art of that they may have seen 63:13 disabled women creating art about 63:15 motherhood 63:16 or men people about motherhood and 63:18 fatherhood 63:19 any examples anyone can share in the 63:21 room 63:25 no because i know fran's been looking at 63:29 this in lots of ways but when she came 63:30 to stay with me which was wonderful 63:32 she came to liverpool well before i met 63:34 the man i'm now married to 63:35 with a 3d sculpture of breast milk it 63:38 was wonderful 63:40 to have that and i i show it practically 63:43 to everyone who comes to stay 63:45 well they can't stay at the moment 63:46 because of kovid but as someone 63:49 i i breastfed my babies and had so much 63:53 milk i actually my first a second child 63:56 i actually breastfed seven other babies 63:58 because i was just like 63:59 it was just a joy for me to be oh 64:03 but those sort of things just didn't get 64:05 talked about and disabled women 64:08 it's it's a it's there's so many taboos 64:10 around all these sort of things 64:12 says anyone got anything that they 64:15 really want to 64:16 share any observations 64:21 no yes amy i'm gonna pin you okay 64:26 so i can see yeah that's great thank you 64:31 i have a question just you know thinking 64:33 about 64:34 um the context of the interventions for 64:38 learning disabled and for 64:39 an experience that you had when you were 64:42 pregnant 64:43 and to think that iceland hasn't had 64:46 a person with down syndrome born 64:49 in the past seven years is astonishing 64:53 and just thinking about the history of 64:55 sterilization 64:57 and of you know population control and 64:59 eugenics and 65:01 and i was trying to like frame that 65:03 within like kind of 65:04 u.s um medical 65:07 like reproductive context and um 65:11 because i've never you know i have two 65:13 children but i never 65:15 had any kind of encounters uh like that 65:17 uh with 65:18 medical personnel but given how 65:20 restrictive abortion is 65:22 and reproductive rights are in the u.s 65:25 um 65:25 i'm not sure i i couldn't tell you if 65:28 that's something that happens 65:29 um i imagine if it did it would be 65:33 determined by state 65:35 state to state because of laws but at 65:36 this point there are some states where 65:38 there's 65:38 one abortion clinic in the whole state 65:41 um so i don't know that just 65:43 uh just something that from like a 65:45 cultural 65:46 comparison standpoint is just uh 65:50 you know something that that really i 65:52 think opened my eyes um 65:54 thinking about that it is um 65:57 i'm gonna just change the gallery of you 66:00 it's a big big issue because it's so 66:02 different from depending on the 66:04 countries you're in things 66:05 and and what people will say about it 66:08 and the uk 66:09 our national health service is brilliant 66:11 but 66:12 when it comes to some of these issues 66:14 it's terrible 66:15 um i i've had to fight the first child i 66:18 had to fight because i didn't want any 66:20 drugs 66:21 i wanted the umbilical cord left on 66:23 until he was breathing on his own 66:25 um i didn't want to be shaved he didn't 66:27 want to be cut 66:28 all these things you can't take charge 66:30 of your body we're in charge of your 66:31 body 66:32 um but i had another child four years 66:34 later it was a totally different 66:36 situation and she was born at home 66:38 by accident but it went really well um 66:41 really different but they wouldn't let 66:44 me 66:45 they didn't want me to do a homework 66:46 though i wanted to be under the 66:48 accident really honestly because they 66:51 thought i was a risk and they wanted me 66:53 in hospital 66:55 and i don't know what that risk they 66:56 really thought was 66:58 so it was quite interesting whether it 67:00 was because i was there for whatever i 67:02 don't know 67:02 but my last child because i was 39 40 67:06 i was told again not as hard with alex 67:09 as 67:10 you know you'd be irresponsible but you 67:12 know you should know because 67:13 you know if you have a dallas baby 67:16 you've got that 67:17 age you could um it's it's quite 67:20 the intervention in that is quite awful 67:23 for women 67:24 because we have it at so many levels 67:26 whether we can be sexual 67:28 whether we can um have children or not 67:32 have children 67:33 the choices that is on us as women and 67:36 then when you impound it with some of 67:37 the issues around learning disability 67:39 and other disabled people and deaf women 67:42 and how they don't maybe get a signer to 67:45 help them when they're giving birth and 67:47 things 67:47 so there's all those sorts of things 67:49 that people don't think about so they're 67:52 i've it's quite funny my friend and 67:54 laurence and his wife 67:56 have both got cerebral palsy and they 67:58 wanted children 67:59 and the very first time because of the 68:00 way her hips are shaped with their 68:02 cerebral palsy they said 68:03 you can't give enough natural birth 68:05 naturally you're going to have to have a 68:07 cesarean 68:08 and i'm lawrence i want to be there it's 68:09 going to be an epidural 68:11 and um they were all cleared up for it 68:13 and then they said oh no you can't come 68:15 in in your wheelchair lawrence 68:17 and he went but the bed's got wheels 68:20 what's the difference 68:22 you know just clean them wheels um i 68:24 mean he really he was [ __ ] 68:27 and he fought it but i think when you 68:29 live through life as disabled people 68:33 the reason disability arts is so 68:35 important about empowering 68:37 is that your voice gets ignored time and 68:40 time again 68:41 not just signal put down you can't 68:43 you're not able to 68:44 and that's the the kind of story i had 68:47 was i can't i'm not able to 68:49 having a child was for me the biggest 68:52 biggest change in i'm allowed to like be 68:55 alive 68:56 and i fought and i that mother would 68:58 experience that it really made me 69:00 but other people don't want children it 69:02 doesn't matter 69:03 but that we have all sorts of different 69:06 things if you're disabled you don't want 69:07 children it's fine 69:09 but if you're not disabled like my 69:11 daughter um 69:13 she's brilliant beautiful blessed 69:14 performer she's also deaf 69:17 and she just does not want children and 69:19 but 69:20 people don't because she has a hidden 69:21 impairment they're not they don't really 69:23 know she's there but 69:24 she's always having to deal with the 69:26 fact that she's not having children 69:28 particularly of people of a certain 69:30 generation 69:31 have any of you ever come across those 69:33 sort of 69:34 kind of pressures on you as women it's 69:36 horrendous isn't it 69:38 you know but then if you really want to 69:40 have women uh babies and 69:41 be a mum or a dad there's disabled 69:44 people and 69:45 lawrence and and adele they were um 69:48 lawrence has been one of the dadafest 69:49 successes and he's gone on she's now 69:52 writing 69:53 big productions with television over in 69:55 the uk and things 69:57 the bbc followed them having their last 69:59 baby 70:00 to do a documentary and that's the other 70:02 thing you do see disabled women in 70:04 documentaries 70:05 having babies but we've not seen art 70:09 that's a big thing but lawrence and 70:11 adele they said it's going to be a six 70:13 part series but because lawrence and 70:15 adele was so 70:16 activistic and saying the right thing 70:19 and not allowing them to 70:21 to treat them badly um whilst going 70:24 through this whole experience 70:25 they made it one episode and they called 70:28 it 70:28 against their wishes we won't just drop 70:31 the baby 70:32 um which is just awful because everyone 70:34 thinks says them as people with cerebral 70:36 palsy you're gonna drop the baby 70:37 it was just i mean lawrence is a whole 70:39 comedy show about it and how 70:42 the nhs has treated him as a father 70:45 um an irresponsible father and um 70:48 he says at the end of it well we did we 70:50 dropped the babies all the time 70:52 you know it's just but every baby gets 70:54 dropped i mean i'm on them i've dropped 70:56 all three of mine 70:57 at some point it's just part of it they 70:59 bounce 71:00 sorry are you a bit naughty now but you 71:03 know there's 71:04 things that we just gotta we want to 71:06 just live 71:07 and do the things other people would let 71:08 us do and 71:10 the the arts can be that real tool for 71:12 empowerment and 71:13 i want to see more and more the stories 71:15 further stories having children's 71:17 stories 71:18 um i actually got in touch with all my 71:20 kids before this and i went 71:21 i just want to thank you all for making 71:23 me a mum and i'm so proud of you 71:26 and um i really feel i want to do more 71:29 with them about 71:30 their lives and that having to fight 71:32 with alex 71:33 and and go against the system because as 71:36 soon as i stood up and said 71:37 i don't think you should have killed me 71:40 i really was treated quite badly then i 71:42 had things written on my 71:44 reports and things and that's already 71:45 just for you but 71:47 um it got better with the next pregnancy 71:50 uh 71:50 yeah yeah pran i mean i'd like 71:54 um to also look at it from the angle 71:58 different sort of angles um in terms of 72:00 intersectionality 72:02 as well as what happens to women 72:07 during pregnancy during childbirth and 72:09 postpartum 72:11 that um we have this stigma 72:14 here in the united states of women 72:17 having to be capable of doing it 72:21 all we're supposed to have jobs 72:24 have babies have clean houses um 72:27 and pack little lunches for our children 72:30 with hearts and notes and i mean we have 72:32 this idea 72:33 of a june cleaver which is a 1950s 72:36 actress from leave it to beaver 72:39 and that we neglect i think we 72:42 intentionally 72:44 try to play down women's disabilities 72:49 um yes they never 72:52 it's true i just cleaned our toilets 72:54 then i'm like why should i be cleaning 72:56 this toilet i'm not the one who pees 72:58 standing up 73:04 but um um i think that we have a culture 73:08 also of of 73:11 sort of portraying women as this 73:15 you know this is your duty your duty is 73:17 to 73:19 get pregnant have children and do this 73:22 afterwards and do it in a certain is in 73:25 a certain way 73:27 and i think that's very intersectional 73:29 with because it goes to what your past 73:32 is how you live 73:33 lived your life whether you're you know 73:35 a deaf woman or 73:37 a hearing person or anything it just 73:39 goes if you don't 73:41 if you're not uh up to par 73:44 then you will perform poorly during 73:47 pregnancy 73:48 birth and postpartum and i think there's 73:51 a deep intersectionality 73:53 with that and the mortality of black 73:56 mothers in the united states 73:58 black mothers have the highest mortality 74:00 rates in the united states 74:02 and i think that um that plays a really 74:06 big part of it the way were 74:10 we have this idea of women 74:13 and um disabilities 74:16 and race so all of that i'm you know 74:19 in my work i do like these branches i do 74:23 the motherhood branch i do disability 74:25 arts branch and i do the 74:26 race and immigration branch diasporic 74:29 branches and as i'm doing all of these 74:32 things separately i'm realizing they're 74:35 more and more coming together to form 74:37 something else 74:39 and um and i just think that that 74:43 might in the in talking about 74:47 the missing link as well because if we 74:50 see it like 74:51 post right after the birth and things 74:54 like that we're like okay 74:55 why aren't mothers making more art why 74:57 aren't more disabled mothers making more 74:59 art 75:00 and really it the question 75:04 should be why aren't we supporting 75:08 disabled murders to make more art yeah 75:10 yeah 75:11 or mothers in general right so so 75:14 that i think that's the more 75:19 i don't know i'm just talking now no 75:22 it's fine what what you're saying is 75:24 really quite important because it is 75:26 those questions put on people 75:27 and i i don't know if you felt this 75:30 round but 75:31 i've always tried to do more to prove 75:33 myself because i felt i had to 75:35 because i was so written off as a child 75:39 um i didn't get into the art style after 75:41 alex was born see alex was 75:43 absolutely the catalyst for change for 75:46 me 75:46 hey i'm allowed to be alive and care for 75:49 someone 75:50 and then i went to a dance class to get 75:52 fit because i was 75:53 overweight and found i could do all this 75:55 amazing things with my body i did the 75:57 splits for the first time in my life 75:59 and put my leg up here and all sorts of 76:02 things then i went to drama school and i 76:04 found my place um where i could really 76:07 flourish 76:08 and be and um and then 76:11 i having the next show when i was still 76:13 at the 76:14 theater school was quite interesting i 76:16 just got on to point in my dance 76:18 when i was pregnant with six months 76:20 pregnant doing that 76:21 it was quite fun actually but um 76:24 but that thing of yeah even though we 76:27 could have supported people around us 76:29 there's always that limit that thing 76:31 about 76:31 saying about men never being toilets it 76:34 really is 76:34 true you know 76:38 we kind of because we have to think that 76:40 way we're almost forced into those sort 76:43 of 76:43 cleaning off jobs all the time but 76:46 this loads of big questions going out 76:48 here i know but it's coming back to our 76:50 right 76:51 as disabled women to be women 76:54 and mothers to stay as artists 76:57 i do know a lot of artists who are not 76:59 disabled who give up their art because 77:01 they're women and they can't do it all 77:03 they know they don't get the help um and 77:06 that was one of the things that was 77:07 going through my mind i was looking all 77:08 the art examples 77:10 how many women had started to do 77:13 something and then they'd gone off 77:14 and they may come back 20 30 years later 77:18 but that shouldn't happen you know we 77:20 should keep 77:21 us in there why do we see that we've got 77:24 to become that caregiver 77:25 in that that big way i mean it's hard 77:28 because we're all dealing with austerity 77:30 as well which is putting more pressures 77:32 on the family unit to look after 77:34 older parents as well and if you've got 77:37 a disabled child if you're disabled do 77:39 you know 77:40 that all those sort of pressures are out 77:42 there 77:44 but i think what the problem is is we 77:46 don't know how to articulate it 77:48 we don't feel we can articulate it we 77:51 internalize it which is why i want to 77:53 see 77:54 more art coming from this place 77:56 disability or about being mums 77:58 about being dads about those sorts of 78:00 pressures 78:01 um there's a few people who do it but 78:04 you can see that 78:06 they're not worthy they can be because 78:08 of it and that really breaks my heart 78:10 for people 78:11 because we all want to have that show in 78:12 life and do our big things and 78:15 but sometimes we have to sacrifice more 78:17 than we should 78:18 for our children you know those choices 78:20 that we can make 78:22 if we can make them some of us are not 78:24 even allowed to make them 78:26 you know that's what's that's my heart 78:29 gosh it feels a little downer now 78:33 but i i also think we don't provide 78:36 enough 78:36 venues for disability artists a 78:40 disabled artist or making disability 78:43 arts 78:43 in general it's not like you said it's 78:46 not 78:47 perceived as something that is um 78:50 there's still a stigma to it and i think 78:53 that institutions 78:55 um as far as i know you know 78:58 there's two main institutions that i 79:00 know that 79:01 do uh do hosts 79:05 and keep it in their programming rit 79:08 at dyer's arts center at rochester 79:11 institute 79:12 in new york they have where 79:15 national institute for the deaf is they 79:18 have 79:19 a gallery there dedicated to deaf art 79:22 the other one is in berkeley in 79:24 california they have their disabled arts 79:26 program there you know sonny taylor is 79:28 teaching there now 79:29 oh yeah she's a great example actually 79:32 i don't know how she's managing because 79:35 she i got it to daddy best one year 79:37 before a child 79:38 came along so um yes you've got someone 79:41 there you can be looking 79:42 carry sounds on as well you know she's 79:44 adopted two children she's phenomenal 79:46 and she's 79:47 done it as an academic she was actually 79:49 in the very first 79:50 ugly girl show we did in 2012 and came 79:53 over to 79:54 liverpool to work on that yeah 79:57 yeah we've got to support those who are 79:59 making it and and see 80:01 where people are at with their choices 80:03 and one of the great things about 80:05 being sisters is that we can help 80:08 support one another to get to those 80:10 places 80:11 and i love my job now i'm not creating 80:13 as much art 80:14 and in one way that feel makes me feel 80:16 sad but 80:17 my job is about making others create a 80:19 heart and i keep doing that and i can't 80:21 say to people if you've got children 80:23 will pay for child care 80:25 we'll put that into our access budgets 80:27 so you are not excluded from this 80:30 but we just don't ask and we need to 80:33 find ways of 80:34 asking and making sure people don't 80:36 internalize it too much 80:38 and that's why i think doing this sort 80:39 of art is so important 80:41 because it gives a voice it reflects 80:45 are reality truth reality of disability 80:47 not the documentaries not the 80:50 the silly stereotypes you often see with 80:58 foreign 81:01 i find for myself as a deaf 81:04 disabled woman um in the art 81:08 world the difficulties for me 81:12 are in finding venues right and 81:16 um being granted 81:19 some uh funding to create my work 81:22 because i am who i am i still have my 81:24 children i'm a mother and i 81:26 do this and i have my job and all these 81:28 things but to be able to have 81:30 i was just telling my friend today i 81:32 just wish i had 81:33 one whole week just to myself to be able 81:36 to finish the series of paintings that 81:38 i'm making 81:39 right and that is not available to me 81:42 because 81:43 one most of the funding that are there 81:46 for residencies or whatever it is for 81:48 artists 81:49 are not directed towards mothers who 81:52 have children 81:53 and now grandmothers right who have 81:55 extended 81:56 family who take care of of grandchildren 81:59 and all of these things 82:00 um and the other thing is that it's 82:04 inaccessible to those of us us and 82:07 amy will back me up on this there's all 82:09 these opportunities out there 82:12 for women artists disabled artists to be 82:15 able to apply for 82:16 funding but the application process is 82:20 not just not accessible not attainable 82:23 for people who have this 82:26 life our lives and so i think 82:30 in terms of that you know because i hear 82:33 this argument all the time from 82:35 experts in grant funding and things like 82:37 who's like well 82:39 these are all available for you okay 82:41 well as a disabled woman who's deaf and 82:43 has 82:43 three children and has a grandchild 82:46 right and 82:47 you know a 56 year old 82:51 boy 82:57 he's gone he's gone he went to go pick 82:59 up sean 83:00 from college um you know that 83:03 that yes i would love to apply for all 83:06 these things 83:07 but i don't have 20 hours to sit down 83:11 and fabricate this incredible 83:13 application 83:14 and in and i do not have 83:19 the experience to list them like my 83:22 contemporaries 83:23 who are men who are not disabled and who 83:26 don't have children 83:27 so you put people like that in the same 83:31 application process you already have 83:33 this huge 83:34 inequity of what's going on um 83:37 because we don't count women's labor 83:41 child care as part of you know 83:44 experience in our life experience when 83:46 truly 83:47 those of us who you and i who are 83:49 cultural producers 83:51 are able to do this with dragging our 83:54 children along 83:55 in in that sense we should actually you 83:58 know 83:59 contemporary to men people should be 84:01 looking at and since they're like wow 84:03 you're 84:03 you're really awesome or you know you're 84:06 you 84:08 yeah that guy couldn't do it it could 84:10 have gotten 84:11 so much you've got to do one thing i 84:12 just want to say you've seen in the back 84:14 of me i've got we shall not be removed 84:17 it's a uk alliance of disability artists 84:19 now 84:20 who are challenging what's going on with 84:22 kobit because we have a big subsidised 84:24 funding 84:25 system in the uk and there's actually a 84:29 lot of people who are starting to 84:30 exclude disabled people from coming back 84:32 into 84:33 opening things in the art sector and 84:36 people who are shielding like me 84:38 and i've been seen as a helpless so 84:41 people 84:41 have not been invited into casts if 84:44 they're in 84:45 where part of the theater production 84:46 things like that so we have actually got 84:49 some big issues that 84:50 we're fighting for and we shall not be 84:52 removed 84:54 is one of the big things we're moving on 84:56 together but 84:57 going back to the original point of the 84:59 whole conversation is 85:00 we need more disability arts from women 85:03 from men 85:04 about parenthood and motherhood and all 85:07 of that and we just don't seem to have 85:08 it 85:09 and it's like it's a hidden thing and 85:11 we're not we've got to stop hiding it 85:14 um so it's trying to make those 85:15 conversations anyway i'm aware 85:17 it's after your time i'm sorry i didn't 85:20 have a 85:21 um a captioner to be able to get more of 85:23 your questions and things 85:25 but there's loads in there in the chat 85:27 room so thank you for that 85:29 and there is a couple of documents i've 85:32 put in there for you one 85:33 it's called non-disability privilege um 85:36 are you probably unaware of the 85:38 um white privilege stuff that's going on 85:40 it's just sort of 85:41 a plagiarized that in a way it was a 85:43 public document 85:44 originally but it just gives you a an 85:46 idea of 85:47 how missing we are in society if you 85:49 feel like well i'm not feeling choosing 85:52 yes or no but do there's lots and lots 85:54 of links 85:55 some papers some films to watch but some 85:58 of the artists have featured it 86:00 today uh you may enjoy getting a bit 86:02 more information about 86:04 but thank you so much for inviting me 86:09 and i hope we get over to pittsburgh 86:10 again before too long 86:13 ruth can i ask you one last question and 86:15 i also anybody who else wants to ask a 86:17 closing question please don't 86:19 just hop in um but i wanted to ask you 86:22 as 86:22 you know you were going through your 86:23 presentation um and 86:25 i think as you had mentioned like a 86:28 critical part of this is like 86:30 just the the ways in which education and 86:32 the institutions and mechanisms of 86:34 education 86:35 can um inculcate indoctrinate 86:39 or help um and 86:42 i guess i was going to ask you in terms 86:44 of like tactical strategies 86:46 i am an educator i'm teaching a class of 86:48 decolonizing contemporary art next 86:50 semester 86:51 how do i bring in disability arts and 86:54 how 86:55 like how the framing of it too is coming 86:57 from someone who 86:58 doesn't identify as as having a 87:00 disability i'm making sure that that my 87:03 language and my terminology and the way 87:04 that i approach 87:05 the material um is i don't know if you 87:08 have any kind of i know it's kind of a 87:10 big question but 87:11 it's just it is a big one because one of 87:13 the things that i feel about disability 87:15 arts is it's very 87:17 um it's very shaped by the context of 87:20 the country it comes from 87:22 because there's so many different social 87:23 starters that disable different people 87:25 and their placing can be very different 87:28 um i mean i 87:29 i i've been able to travel 87:32 a lot and i did a big winston churchill 87:34 research piece 87:35 on the empowerment of disability because 87:38 a lot of 87:39 places african india organizations were 87:42 getting in touch with me who 87:44 wanted to work with disabled people and 87:45 the arts not disability arts 87:47 and you get a lot of gay keepers like 87:49 that and it's like 87:51 i wanted to research where are the 87:52 voices is it coming from disabled people 87:54 themselves 87:55 and you see some countries it is some 87:58 they are so oppressed and put 88:00 down and not necessarily countries where 88:02 you think 88:03 i was in finland and i was shocked that 88:06 i was on a big 88:07 um stage with lots and lots of producers 88:10 in the arts 88:11 and there were two disabled people on 88:12 that stage there's about 15 of us 88:15 and i was one and the other was carrie 88:18 sandal 88:19 and they were talking about art 88:20 disability arts and they all said 88:22 we never know any disabled people in 88:24 power in finland 88:25 and then this young woman came to speak 88:27 to me and curry afterwards she's a 88:29 wheelchair user 88:30 and she said we get pensioned off when 88:32 we're 16. 88:33 we're told not to go for jobs we're not 88:35 told to go to universities they give us 88:37 a flap they give us a pension 88:39 type of equivalent and we're happy we're 88:41 looked at but we want to take part in 88:43 society 88:44 and they don't allow us and it was 88:46 really interesting 88:47 hearing it come that's as a culture then 88:50 i go somewhere like 88:51 um malaysia dr congo and seeing these 88:55 incredible groups and disabled deaf 88:57 people just doing art 88:59 my one of my most favorite was um the 89:01 whole group 89:02 in i've probably gone off kills for a 89:04 bit there but i'll come back and 89:05 really answer you in a moment was um a 89:08 death group and they were digging sewers 89:10 in that in a day and they were frying 89:12 eggs on them 89:13 the road to to sell to get money and 89:15 then in the evening they were artists 89:17 because they did theater together and 89:19 they were they were brilliant 89:21 and it really threw me about how we say 89:24 we can only be artists or this 89:26 if we've gone through this sort of 89:28 training or this sort of experiences 89:30 but it's almost an attitude i'm an 89:33 artist i'm an activist 89:34 i'm a this you know we can claim those 89:38 but i think disability arts means so 89:41 many different things to different 89:42 countries 89:43 the uk has really sort of promoted it 89:45 because we have a fantastic art support 89:48 system 89:49 subsidised arts which realize they 89:51 weren't getting disabled people involved 89:53 not as audiences and that was something 89:56 that was dealt with years ago so we have 89:58 lots of accessible places and 90:00 and audio described performances signed 90:02 performances 90:03 all sorts of different things we are 90:05 getting the artists and now we get the 90:07 artists 90:08 and the support in place for that so 90:10 there's a lot of websites you can look 90:12 at the disciplines the arts uk 90:14 and but it would be good to try and find 90:17 it where you are 90:18 who are disabled people in your locality 90:21 your community 90:22 because i really think young people need 90:25 to be 90:26 have role models people they can see 90:29 oh they can do that one of the things 90:31 about putting kids into segregated 90:33 school 90:34 at an early age is we've created this 90:36 feminist for disabled people 90:38 it's not ordinary every day and that's 90:41 one of the crimes i think around 90:42 segregated education 90:44 i know some people need more support but 90:46 in the uk they'll have two sport workers 90:48 working with them in the school 90:49 um so if there's different things that 90:52 are different schools and 90:54 places will do but disability arts i've 90:57 given you two different definitions 90:58 there 90:59 i don't think you'll ever be fixed 91:01 because it loses society 91:03 and i'm seeing now more non-disabled 91:06 people doing disability arts like mark 91:08 quinn and 91:08 alison lappa working together she's a 91:11 brilliant artist 91:12 in her own right she i put a website 91:15 link in the paper 91:16 she doesn't work with a mouth and a 91:18 brush and it's brilliant work she does 91:20 and she just she goes into schools and 91:21 does workshops with kids 91:23 and teaches them how to do art and it's 91:25 fantastic because it's breaking the 91:27 taboos all the time 91:28 about what disabled and non-disabled 91:30 people can do 91:32 but we have to be careful we had the 91:33 real problem with the olympics in 2012 91:36 where 91:36 disabled people had a major moment and 91:39 there has been a change about how 91:41 disabled people are seen in the common 91:43 media 91:44 of the country because there's so much 91:46 promotion about 91:47 it but it's now had a backlash because 91:50 hate crime is on the rise because 91:52 people think disabled people can do 91:54 anything they don't want to be 91:55 paralympians and 91:56 fly across the roof or whatever whereas 91:59 they're athletes 92:00 paralympians they're very talented 92:02 skilled dedicated 92:04 sports people but that's not said it's 92:07 all are they amazing because they can do 92:09 that with two 92:10 lone legs and that conversation's going 92:13 to change 92:14 you know because our life can change any 92:16 moment 92:17 that's the thing about disability it 92:19 cuts through everything 92:20 every age every background every 92:24 i mean there's a lot of incidences in in 92:27 low socioeconomic communities but it can 92:30 happen 92:30 to anyone at any time and it will happen 92:32 to us all eventually 92:34 so i really want to get the conversation 92:35 happening earlier so we don't i think 92:39 sorry to interrupt you i think also um 92:42 the culture here in the united states 92:44 for disability is very 92:46 very set and really hard to shake that 92:49 mold out 92:50 um last year we had an incident where 92:53 dr was it last year two years ago ruth 92:56 where drag syndrome this this uh company 93:01 uh the artists have down syndrome and 93:04 they dress and they do this drag show 93:06 very much like what you see in the you 93:08 know the under 93:09 new york underground drag scene and they 93:11 were banned from performing 93:13 in rally in rally because 93:17 um because of the way the conservative 93:19 government is right now 93:20 and so um they had an alternative venue 93:24 and they 93:25 eventually and i and i think they were 93:27 able to perform in a very very small 93:30 scale but they were not able to perform 93:32 in the um the original venue the larger 93:36 original venue where they 93:37 were supposed to be performed they were 93:39 canceled like last minute 93:41 when uh the owner of the building who 93:43 happened to also be 93:44 seeking political office saw 93:47 the programming of that day and he kind 93:49 of put the kibosh on it and said oh no 93:51 you guys can't do this 93:53 so you know we all through the lived 93:56 experiments 93:57 where i put an exhibition together in 93:59 liverpool went to grand rapids into the 94:01 three galleries 94:03 and they got the funding because 94:04 everyone thought all disability arts 94:06 would be nice 94:07 but actually what they didn't realize is 94:09 there's a lot of 94:10 subversion and in your face challenges 94:13 in the way the work was being created 94:15 and it was almost like disability arts 94:17 just done like a trojan horse 94:19 you know it's like oh disability nice 94:22 and and the sponsors oh nice yes but the 94:24 creators were going yes we can get 94:27 really risque 94:28 work here and i thought it's not 94:30 interesting that you can do that with 94:32 disability arts 94:34 but yeah it's it's accountable for 94:37 people because they don't like people 94:39 who are 94:39 who are really selling out the truth and 94:41 that's really hard i mean 94:43 you can have down syndrome and be gay 94:46 and be trans and to be 94:47 into drag and to be mothers and to be 94:49 fathers 94:50 but we don't allow that to happen you 94:52 know it's not nice 94:55 so we've got i mean we still have ugly 94:57 laws 94:58 yeah put all these sorts of social 95:00 things on there sorry i've not given 95:01 about it 95:03 but it's a big thing 95:06 although amy i do think if you look into 95:09 the history of disability in the united 95:11 states you'll see 95:12 a lot of art that we don't classify 95:14 right now as fine art 95:15 because well they were probably made by 95:18 disabled people 95:19 and so it's not been put in that 95:21 category yeah right but 95:23 you know like for example immigrants 95:25 coming into ellis island 95:27 who had some sort of um deficiency they 95:31 called it that were turned back 95:33 and deported i mean i read this story 95:34 once of a man 95:36 who was you know it had lived in the 95:39 united states for two years 95:40 gone back to italy to give some money to 95:42 his family 95:43 came back and they had they evaluated 95:47 him and he was turned away because his 95:49 penis was too small 95:51 and they were deemed yeah and they were 95:53 deemed as defective 95:55 and so you know there's a lot of work 95:58 about 95:58 those types of incidents that are that 96:01 exist 96:02 but we don't recognize them as like art 96:05 art or 96:06 a particular would you like to go to 96:07 their airport security 96:13 19 what 1928 yeah when else island was 96:16 still open 96:18 there was no x-ray machines no no it 96:21 wasn't that big were you standing 96:26 the entrance to ellis island they almost 96:28 they had what was like a 96:30 almost like a an obstacle course for 96:33 people to go through 96:35 so that the immigration attorneys would 96:38 just look at it 96:39 and you see if they see people fumbling 96:41 they're like okay you're gonna get 96:42 flagged 96:43 and you're gonna be we're gonna test you 96:45 more to see if you're deficient or not 96:47 if we can let you in the country 96:48 so if you think about the design of that 96:51 as 96:52 you know almost like a piece of art this 96:54 obstacle course 96:55 i mean there are those things that exist 96:59 as um art pieces 97:02 and uh so yeah yeah but if you're gonna 97:05 look for like 97:06 disabled artists i mean there's a book 97:08 about that 97:09 you know yeah a big different difference 97:11 between art 97:12 and disabled people and disabled people 97:14 doing art to disability art 97:16 because disability art is actually its 97:20 intention 97:20 to capture the lived experience of 97:22 disability and 97:24 so a lot of people think if you're 97:25 disabled i'm doing art it must be 97:27 disability art it's not 97:29 it's starting a disability it's very 97:31 different it's not 97:32 disability art so there's a lot anyway 97:35 people are reason to go there's papers 97:37 in there 97:38 being sent to you by email from sarah 97:41 thank you so much 97:42 sarah for sorting out the room and 97:44 everything 97:45 and for you all bearing with me with all 97:47 the technical hiccups here 97:49 so i thought i was going to get it 97:50 really smooth it was very smooth 97:53 said trust trusting very smooth 97:57 i can send you the um the powerpoint if 98:00 you want 98:01 um what pressures on these things okay 98:04 that would be great because also just 98:06 the great examples of artists to 98:08 to dive into and look at more 98:13 all right well thank you so much have a 98:15 wonderful weekend 98:16 and first you want to stick around 98:18 before you hang up so we can 98:20 square things away so thank you everyone 98:22 for coming i really appreciate 98:24 you bearing with us through all the 98:25 technical difficult difficulties thanks 98:28 tiffany 98:29 thank you great to see you i love you 98:31 again tiffany 98:33 and susan powers who's part of the 98:35 anthropology of motherhood exhibit 98:37 currently thank you so much for being 98:38 with us