Hello and welcome to the If We Knew Then podcast I’m Stephen Saux
And I’m Lori Saux
And today coming from Cumbria, England is Cristina Bowman.
Christina is an advocate and she created Diff-Ability and is a member of some really great support groups that offer resources to the Down syndrome community and in this episode we discussed a negative story line in the U. K. soap opera Emmerdale that affects our community and it also opens up the conversation of personal responsibility and the entertainment industry. I have to admit that I was apprehensive and and talking about the story because it’s negative and I I tend to try to focus on the positive but in in this case we have a chance as a community to to join together and support each other because they are still misperceptions there are still bits of bullying around and we can make a change by letting our voices be heard and also discussing just the discussion just to be able to say Hey this is going on it’s wrong and I don’t like it and maybe it doesn’t change the actions of the the doers but what it can do is validate our concerns and help us as a community to make those much needed steps towards change and a more inclusive loving world now let’s welcome Christina Bowman Christina thank you so much for joining us today thank you so Christina maybe you can start off with telling us a little bit about yourself and some of the things you do you do you do some great advocacy work in our community Sir my name is Christina and I live in Columbia I’m originally from the northeast I’ve always done lots of things in the third sector but most recently after having my youngest son who’s now three and his bombs down syndrome I had some very negative thoughts about what down syndrome most misconceptions I believe I bought to me because the society and the way that we look down syndrome I thought he would die young I thought he would never be able to get married to live independently all these things I have now discovered a totally on trend just half an hour up the road the longest married couple who have down syndrome nope the root mean it’s been amazing to me and and delusions that they still hold for each other it’s just it’s a delight to see so I went out there and find out what the truth about guns Angelus and then I found a young lady called Jen who has down syndrome and she has her own charity called down syndrome so the consultant acts and Max’s million constellation which groups that’s you know however you can you are you can start doing what you love doing and why three and are involved with down syndrome swimming GPA again something that I didn’t know was out that’s it distillate group athletes you know do it the groups across in America Canada the island you know everywhere and had no idea so I said to disability D. I. double F. because everyone’s different we all have different abilities I see some things have to come to a standstill due to cooperate and what was not marked down in and get involved with this many different groups as we can because everyone should work together really well this out that is pretty so you’re here today because of of a TV show in the U. K. called Emmerdale maybe you can tell us a little bit about that so and the details and what she does show watched by millions of people James is setting off the auction in a farming village and to the characters and find out that that child may have down syndrome and we already know that this is going to end in termination thirty three adults who have down syndrome wrote a letter asking them to please not put the show on before it was ever screened and they just totally ignored that request saying that it’s showing the signs of you know what people do when they find out that you’ve got a diagnosis of down syndrome adults with down syndrome that me being hurt by this if I asked for the starry night not to be sure we believe it’s against the human rights they shouldn’t have to sit there and suffer through this storyline basically it’s telling them that it shouldn’t be here how did you guys find out about the storyline so because it was such a shocking storyline they decided to put it out in the media and that this started I was going to happen so I don’t know if it’s just to try and get ratings I do understand that people do need to be protected from this because of an awful lot of people with down syndrome the watch this show this show goes out to millions of people and once we found out we said well who is it that you’ve actually been in contact with because the down syndrome community is very close knit and we knew that hadn’t approached and needs to be cut down syndrome support groups and DSA and positive about down syndrome and down’s syndrome Scotland and we found out that this actually approach something called out now it’s called ante natal researching choices what they say is they support women in the choice do founded in nineteen eighty eight and originally called support after termination propulsion also after and then I had to change the name to support around termination optimality nineteen ninety three and before finally adopted them continental results and choices has the story line started to come back to be shown yes and it started this week have you guys done any kind of boycott for viewing to boycott the show in their storyline does that change the arc the tension started and great to me is actually thirty one thousand well over thirty one thousand signatures now and so many of those people have boycotted the show absolutely disgusted by it can we put that change dot org on our show notes so people can go on and continue to sign the petition yeah put that against the show it’s slowly changing I think right now we’re at age where we’re seeing that it’s changing and also people are using their voices to make that change because it’s gone on across the board just before too long and and I think what happens is people get confused with this a woman’s choice righted channels right to choose because that is so important and that’s something we have fought for that is not what we’re talking about here because if that was the story line that it’s not dependent upon down syndrome and I think that’s what the writers of the show have to understand when you make if it’s something where someone finds out and then this is this is the topic if you’re saying I’m gonna make a show to support women’s rights definitely because in our country right now we’re having to make sure that that gets up held that’s not what’s being done and they need to understand that whatever they’re trying to ride the coattails of one that’s wrong that is disrespectful to women that is disrespectful for the fight that went on to get that right and it’s it’s wrong what’s being done because this is not what is being said what they’re saying is the value of someone’s life with down syndrome is nine that you don’t have a value and this is what should happen and that needs to be perfectly clear that they need to own this is what you’re saying that is what has to be addressed because people try to blend those two things together and it’s completely separate yeah and that’s what we found and a lot of people being attacked we called pro life as far as skiing for sure not to use down syndrome there’s a reason for the abortion we improved choice we have pro in phone to decision dot hostage the issue that we house around in this is that there isn’t enough information out that balanced information who’s to choose what is balanced information for each person I mean you know someone might want to speak to press an adult with down syndrome super else might not already know animal mind what it is today what do without least having not there and we know what the medical professions have been enforced opinion and three nine yeah I’m pushing you into action that you might not necessarily want to take this is a balanced story how could it possibly be when it keeps getting mixed up with a choice and you need using down syndrome as in recent genocides well I think that’s the I think that’s the thing is that the the the writers of the show need to be accountable and they need to be accountable for what they’re doing they’re not doing anything for women’s rights so that should be absolutely clear they’re not doing anything for women’s right they’re not doing anything to push forward that the the right to choose what they’re doing is they’re supporting the thought of genocide and they’re they’re sending a message that the life with down syndrome has less value than a typical life because that’s the story that they’re telling and the effect that that happens to the perception of down syndrome is it affects my fight for my child’s equality in the world for the opportunities that he receives for the education he receives you know I DO in our in our country was put into a fact in the seventies forty years ago forty years ago and I’m still having to fight for my child to receive an education because things like this are put out to the world things like this that are completely false and they create a misperception of what down syndrome is so the the responsible thing to do would be to %HESITATION if is there show about down syndrome is it to have a discussion about what that means or why this woman thinks that and to show the opposite side what I’m gathering that’s not what’s happening and so that’s the problem you have a responsibility Amazon has a responsibility to the product they put out there Twitter has responsibility for the verbiage that they put out there and the entertainment industry has a responsibility because it wouldn’t happen it would not go so blindly by any other demographic because the groups behind those demographics are larger in part because what the show is basically advertising and doing so we are demographic gets smaller and smaller because of the message that’s being sent out by the show and because the parents as you said and this community is already working so hard to put up that fight like what you have to do to sit here with us today and what we have to do to sit here with you today to bring attention to this matter is the take away from very valuable moments with our family and I think that our community it’s it we don’t we don’t always have the energy we don’t always have that time and that’s why things like this persist M. because society thinks it’s funny to use the R. word and people don’t understand the ramifications and there’s no accountability what what what is Emmerdale’s rate reaction to the push back or what what did they say about their story line and and and the reasons they say and the and the dell often tackles difficult subjects and looks at events in people’s lives when they’re faced with mantis decisions they also go on to say that ten this isn’t about right or wrong it’s about showing the other side of the story the just not really taking responsibility at all for the hash in and damage that the cost into our community it also you know we saw level say that you have to think about the impact some siblings we know %HESITATION due to studies the siblings the the majority of them okay and they say that they’re actually better people for having somebody with down syndrome in the life so Emmerdale that part of their response to us to support what they’re doing is because siblings are affected with that what’s being shown you saw the character six you have to think about the impact on to things the thing about that storyline is all they’re doing is propagating stereotypes and false information all they’re doing is propagating misinformation we just had such a what’s largely lazy writing it’s so lazy it’s so irresponsible it’s it’s just and to me I don’t I just do not understand just that Blay in except that they think oh this is gonna I I don’t know I can’t even interject it’s one of those situations where I just don’t understand it we just had the loveliest conversation with the founding member of the group ten thousand maniacs the bass player and head and he’s he’s so lovely his his sister was born in nineteen forty nine and she had down syndrome anytime we have an interview with a sibling this is the profound affect the profound live positive inspiration just like empathy because as siblings sometimes they’re fed information from society like I know that you know they can go to school and people will say oh well this must be what you’re experiencing and the reality of their life they they’re so there’s such a grand impact on their lives to see the difference between perception and reality the difference between an unfounded belief between what they’re actually experiencing and the life lessons that it’s just such a %HESITATION a gift and so %HESITATION so that doesn’t make any sense is it doesn’t I can’t say that everybody’s experience is one hundred percent but like you said Christina there’s been there’s been studies in P. I mean it’s it’s people are in collusion is about him I asked I asked people less that you know is this true and I don’t know how many people I didn’t count but the the space messages just kept coming through saying no look at the siblings and I’ve still got images of siblings just doing happy day to day things and saying this this isn’t true we pay our families happy how can a show like this J. tourist siblings so far this is old no Stephen had mentioned that there is another storyline on the show there is a character with down syndrome is that true that is true and he’s been in this show off on nine years now and that actually using him as a reason and they because they have somebody with down syndrome in the show this makes it all OK because the character is going to go and speak to the mother as the little boy which again in reality many people don’t have that option I don’t have the opportunity to go meet somebody with down syndrome and %HESITATION our parents because they just don’t get signed posters and not to me just now actually this is worse because you’re saying that even though these people know somebody was down syndrome they know that family going to talk to that family yes hi information that many women in reality don’t gas and it had a positive experience the way that it was explained that wasn’t the way that most women get it delivered to them and they’re still going to get rid of this child because it has germs in through no if you take away all these things and you just look at a person he has found this out hasn’t had all the information this kind of being pushed towards a termination pathway that life isn’t where they wanted to pay and that could be life reasons that doesn’t really do feel that the cat looked after child with with disabilities today no not might be real life story what’s being portrayed on and the deal is not there’s no way that they can make this okay put it on the soap opera and then also how can these outdated stereo types like we have to think of the siblings and thrown out it’s just wrong you can write what you said you can write a story line and that is a very real situation where some people they they might find out and not be able to or feel they’re unable to care for a child with a disability but I don’t think that’s the message that’s being sent here from what I’m hearing that isn’t that isn’t the message and it’s also I don’t know I feel like there’s there’s too many other thing if that was just the message that it might be different if it was presented in a different way but if you first of all with the actor with down syndrome has to go and and talk to somebody and say Hey you’re right I’m Tim I’m at that can’t believe the press can’t believe they would do that to another human being used to say you’re right how can I make another human being do that nineteen is beyond me just like I said these include the fact that they’re going to speak to the parents of the child with down syndrome and because the how does ms Johnson to on the show anyone who’s been at the shows well I’ve heard a lot of a lot of points made on on social media that Hey it’s a soap opera houses can influence people but we know we have no value shows here we know they employee had a reality TV show that influence to the next president of our country there there is TV shows that you change the your hair cut because of the the person that’s on the show you dress a certain way because you see how someone is dressed on a show so if you tell me that a TV show can influence anybody then you don’t understand entertainment slash marketing slash advertisement this is what happens and so it’s ridiculous it’s ridiculous to use that as an excuse as an excuse and I and I find it hard to believe that that’s how you really feel now I find it hard that somebody on a successful soap opera I would not understand the impact because I’m sure they’ve seen the impact of their show permeate yeah that’s what entertainment is it’s influential yeah I want to be clear too because you know Stephen bring them a lot of points on on the side of what the the opposite side with the real opposite side of the story is and if they want to find the real opposite side of the story then they can look and see what people are saying and and it’s not a E. N. know that that isn’t necessarily what I’m hearing that they’re presenting they’re not presenting the opposite side so this isn’t about choice this is definitely not if that was if that was what they were trying to get across then it would be it wouldn’t have anything to do with down syndrome and the impact on the community is great because you’re basically telling anybody with down syndrome that you feel like their their life doesn’t have a value and and you are propagating every stereotype that every parent has to navigate through the entire journey of their of raising their child and creating a life and opportunities for their child that’s one thing that they need to own and understand and if they continue to go for that’s absolutely their choice but to turn a blind eye and pretend like they’re not having a negative impact on people with disabilities make it a blanket disability make it we found out our child has a disability don’t be so precise as the state’s down syndrome then have another character who has down syndrome D. validating their life and existence don’t do that don’t do that to an entire community for me I feel like okay if you want to go forward in this than one own what you’re doing just own it I would writers you come out and you come and talk to the the community and say we stand behind the fact that this is what we think about down syndrome have had that kind of if you have the courage to put something out there that’s going to have such a detrimental affect on a community and you’ve heard their voices and to ignore a letter from thirty three people with down syndrome from thirty three adults saying this is the reality of what you’re doing you’re gonna turn a blind eye because of a group that has nothing to do with down syndrome says you’re good to go that’s a responsible at but if that’s what you decide to do then have the chutzpah to come out and own it don’t don’t hide behind some fake noble thing that you’re trying to pretend that you’re doing cash on either side you’re not showing the other side and and and you’ve been told that that’s the thing I get it like if I if I do something and then someone says Hey lord this is what you did I will say I am that’s not my intention or I’ll go yeah I know it’s obviously if it wasn’t your intention something with a changed so own it own whatever prejudice you have toward the down syndrome community that that you think this is okay that you’ve ignored our voices have there been any people from the down syndrome community to say yeah this is a good story line go for it it was one was that you have said that had she known she would have ten minutes as I’m actually back to the and the daily star line and I said to him but this isn’t about choice this is about the negative effect that this show is going to then house on the rest of the down syndrome community not one person’s choice %HESITATION those thousands of people out there that could even affect negatively impacted by this she just wouldn’t because she so blindsided by what she wants %HESITATION what she feels maybe she should have done that you can’t see the negative effect it’s having on the rest of the whole of the community people have been approached in school grounds sure enough the parents tell them well I would have an abortion couldn’t help with having a child thank you %HESITATION you know Stephen I’ve experienced that a lot in our ten years of when when Liam was still it Betty and I took him to the park with Sophia I had a grandmother tell me of a place in Arizona I could put my child because not many people want babies like that and when I tell people that story they’re horrified but the reason why that woman felt comfortable doing it is because in the nineteen fifties the doctors would say just leave your baby at the hospital will will will take care of it we’ll put an institution it doesn’t have a value and that was something that what they said this is just from the nineteen fifties so I got involved with mehendi voices partnership because after Max was blown door my experience wasn’t box it wasn’t the best data I need to find out that someone’s hand to hand while the patent was an individual being asked if they would like to believe that they because you can put your baby up for adoption now this is only five years ago I’ve heard somebody else tell me the same thing and this was three years ago so this isn’t something from the nineteen fifties this is still something actually does get off it parents know it’s been continuous and where it started from and and where we began just hasn’t changed enough and it’s because of the perceptions that are propagated you know it’s it’s because from the outside what people have been meant and thought to believe it’s just not it’s not the reality of the situation and and so I think for I think for this for this episode for this for this conversation what’s important to me is one that our community understands what the power of their voice so to go to change dot org and sign that petition and too for any parent who two watches Emmerdale who is in that situation where they’ve just received news in a negative way and are receiving those negative stories that are still out there that you have so many resources so many resources at your fingertips so many people to reach out to to get the truth or at least different personal truths because everybody’s truth is different there’s so many people that you can reach out to to talk to to get support to get comfort to have information to be empowered because that’s the thing is that our education and our stories empower other parents to know that it’s it’s not based on this and you know to the parent who supports Emmerdale and feels that way I just have nothing but compassion for that person and empathy to to have had so many challenges and to not have had the support in whatever their community was and in whatever their group there tried to not have support to have lifted them up and help them to where they they feel like that was a better option I get that I was adopted at four years old my mom thought I was too much for her so I was given away at it so I have empathy for the sept the parent that feels that way and I know that it happens and it but it doesn’t just happen because your child has down syndrome it happens because being a parent is hard and so I think that the whole of the story needs to be understood and parents in this community we we need to rise up and understand that until it changes were still gonna hear stories and we’re still going to be presented you know by the medical community we’re gonna still be approach at the park or the grocery store we’re still going to fight for the education and the quality of our children and that’s just what we do right now but I have confidence that it’s changing then that it will change and with this conversation it’s unfortunate it’s really unfortunate because Emmerdale does have its at a chance to make a positive impact or at least actually create the other side of the conversation they have a responsibility and they have a power and they’re not owning it and to me what it sounds like is they don’t have accountability and they’re ignorant to their impact and they’re taking advantage of a group of people who fight hard enough for what really matters what really matters is equal rights what really matters is our education what really matters is our civil rights those are important you know what a soap opera it’s really not that important and at the end of the day you have to ask yourself people of Emmerdale what have I left on this earth what impact have I made to humanity and is it the one that I want am I proud of this is this something that I can stand behind so what’s important to me for our conversation Christina could you do great things in our community and you do you help to put the change out there and this conversation it might not go our way they may continue with their story line and just not really care and that’s some that’s what bullies do but we’ve dealt with that before in this community haven’t way and we’ll take this negative and somehow will make it into a positive some had somehow we will make a change with it I think we already are and I don’t know if you’ve seen the videos the ten percent videos parents of composite and decided to keep that children understand how in a minute here I’ve always listened to our side of the story we have the minority here the ninety percent a telling us we should be quiet when when we are the ones that are the minority group you know it’s non judgmental it’s telling about their side of the story how they came to the decisions that they did and what life’s like now you know and and both sides of the story do you need to be heard because the ninety percent count just ten road in shelters well known anti abortion you know you pro life that’s not the case it’s it’s it’s not about that asal the ninety percent can’t turn around and and yell at us you don’t have a value and you don’t have a voice and that’s what they’re saying and they’re wrong because every life has value and every life has a voice and a lot of people are told they don’t and unfortunately then they lose their voice and it’s hard to find again and that’s just not people with disabilities that just not people with down syndrome I I know plenty of typical able to people who have had different challenges in life and been told that and their community but they can still function they can still go out there without because that’s something that they hold within and that’s something really kind of humanity needs to that that needs to change as far as how we treat one another but a typical person I can go out into the world and nobody knows what I carry in me nobody knows what’s been said to me no nobody knows my challenges but my son he has those almond shaped eyes that tell people and people can automatically look at him and jacked what they believe his challenges and his value is and it comes from misinformation and they’re wrong does beautiful almond shaped eyes they are right I love when people say Liam looks a lot like make some like thank you I think I think we have so much in common so FIA is so much like her dad and Liam and I are on the same page always so I’d I’d I do think that that something good is coming from it because we’re speaking up and I think that has such a value because it takes a lot it takes a lot to speak up and some really beautiful great powerful courageous people have come before and that’s how they may change and they inspire me in my life and so %HESITATION even if Emmerdale continues forward I I say that as a community we need to embrace our community and knows that we need to work harder to make sure that when parents are in the hospital or they receive a diagnosis that there’s plenty of %HESITATION supports for them and resources for them and the awareness that they’re out there for them that as a as a community that if we can let our voice and I know it’s hard and I know it’s a challenge it’s challenged eke out a minute and the day to do other than what you’re already doing but that’s the other side that needs to be shown that’s the other side yep that’s if that is the side we’re experiencing there’s no way for the people that choose to keep their children quite the opposite I mean remarks his bond was nothing in the hospitals who’s not no sign posting and so that’s something else we have been working with hospitals to try and rectify him because next and put together that we co produced with hospitals there are a lot of hospitals okay I mean you can’t that don’t have these packs and I’ve been speaking to somebody in Australia and missing the Jack’s basket to new things you know that do grow in the countries and it’s just that you can and it it hurts me to think that anybody out there I have a child B. Boland inching call the negative things I thought that just aren’t true because of that and how do we change that and hopefully next say some change positive change will actually come from this and started on we have to try and look for the positive stop me in everything the I think the first initial reaction is just the anger you know because we do fight so hard to to make a difference we fight so hard to change the narrative and so there is that initial are you kidding me and we can’t believe %HESITATION we’re doing this again it’s like when I tell my daughter to pick up her shoes like for twelve the twelve time it’s like really weird we’re we’re still doing this but we are and if we have to keep doing it then we have to but it will change and I think that there there are supports out there for parents more more supports than were out there when Liam was born and so I think I think that that that just continues in this just maybe this is just something that gives us the knowledge it would be great if they would be they would take some responsibility and accountability or even make a change or actually do what they’re saying that they’re doing and actually shows the opposite side that would be great but the chances of that happening are very slim because bullies very rarely do that and they’re picking on they’re picking on the vulnerable yeah because they can and honestly they can that’s that’s why they’re doing it because it’s an easy target and and and and and something that I think that one day that they’ll regret I because when they understand whenever that time comes what they’ve done but that’s not that’s not mine to judge that’s up but it is here to support our community and and I’m so I’m so thankful that you brought this to our attention because we would have never known about it now this is going to be a lot of our listeners that really don’t have any I have you no idea this at all so what our listeners can do is go on change dot org and sign the petition is there and and and you put that no no it isn’t and what do you think the next step is Christina in the U. K. this that down syndrome association that the guy could get in touch with and this down syndrome Scotland and they they were furious and that this storyline and this was about down syndrome and I know that they also have new parent groups and a half and counselors that can help you and if if you choose to use them in touch with them so this one is that there are lots of local support groups that could point you to walks and an adult and a parent if somebody was down syndrome you could possibly talk to like you said so much about how bad the so much love out there I mean if you do have Facebook or Twitter and you call out we will hear will come with a spot you we have a big family and with him and we’ve got your back is Rachel says you know we’re a family we are and and part of the family is to be strong and %HESITATION to protect each other and to stand up for each other and you know we go through challenges together just I want to acknowledge this is wrong I want it acknowledge that you’re doing great things to make positive changes and there’s a lot of people out there others groups you just named and that should be that’s the focus of this community that’s the focus and if some silly TV show wants to right a stupid storyline that is bully ash and hurtful and they don’t have accountability as an artist that’s on them that’s on them what’s on us is that we’re changing the story and we’re changing the perception and that’s what we’ll continue to do and I appreciate you and I appreciate you bringing this to the forefront so you know if you’re if you’re not in the community debt that is exposed to Emmerdale we can still support each other again by going to change that work by reaching out to any of those other organizations that were mentioned that we can put also in the show notes and then what about those ten percent videos is there a way that people can make those ten percent videos yep so it’s if you contacted disability and we can put those together for you and it’s to give parents a voice really was that bad you know they feel that they just don’t have right now it’s not about negativity it’s about showing the reality of what happens because everybody’s reality is different some people have such positive experiences at this you just want to sing cry when you listen to the stories and %HESITATION this is the problem it should be the same pathway across the boat everybody should be given Allen’s information and and we should all have a positive experience whatever we did we appreciate you Cristina thank you for joining us today and one day hopefully we get to see you in person.
That would be lovely.
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