11. The Responsibility and Power of Words on Social Media – Interview with Rachel Mewes

Episode Transcript

Hello and welcome to the If We Knew Then Podcast. I’m Stephen Saux

and I’m Lori Saux

and today we’re joined by Rachel Mewes comeing to us via Skype from Northumberland, England. We first heard about Rachel when we came across a Daily Star article she was featured in that documented her frustration with Twitter and their reluctance to remove abusive tweets towards people with Down Syndrome. I reached out to her and we are very happy that she’s agreed to join us. Rachel welcome to the podcast.

Hello thank you for having me.

We’re so glad you were able to join us.We saw the article in The Star and we it really struck a chord with us. It really brings up such an important topic in our community and in our society.

And I think the power of words and it’s something that I teach Sophia. People need to understand the power of words positive and negative.

Yes so maybe you could just start with just telling us a little bit about yourself.

Yes, my name’s Rachel I’m from Northumberland in England. I live with my partner Kurt and my daughter Betsy who is coming up on 3 years old and she has Down Syndrome. I’m also a contributing editor for ‘Making Chromosomes Count’ which is the Down Syndrome community newspaper. My background is in teaching children with special educational needs and disabilities and I’ve also worked with adults with disability and learning disability. So I’ve got quite a background in the sector.

Yes. Making Chromosomes Count is a terrific news organization and I’ll definitely put their Twitter account and Website in the show notes. I’ve mentioned this before with another guest we’ve had from the U. K. but we really find so much useful information coming out of England and the in fact the entire English Isles and in one standpoint social media is giving us a chance to get to that information but, as is discussed in the article you’re in, there is a flip side to that with the social media and the negative side when it comes to discussions about disabilities in general and also specifically Down Syndrome. So Rachel tell us a little bit more about that article in The Daily Star that you were featured in.

So I do use Twitter a lot. I run the Making Chromosomes Count Twitter page as well as my own. So I would say I’ve been using for a few years and with my own account and then more recently with the Making Chromosomes Count account. Every day I search for Down Syndrome and #DownSyndrome just to bring up the latest articles and stories from the community and this is on a worldwide basis. And this is really good because we can really get what happened in the last 24 hours across the community and then we can report all stories. Unfortunately when I do my daily search first thing in the morning before my daughter gets up it comes up with I would say about 90% of the posts that come up on Twitter when I search for Down Syndrome are nothing to do with anyone from the community. They are simply the rocketry each filled all style comments towards people with down syndrome so I report them so I’ve been reporting these comments to Twitter for quite a while now and and occasionally I get a little notification not maybe one of them has breached some of Twitter’s standards some of them don’t change I see the comments again and again even after a report with them and I’ve just got to the point when I thought nothing is being done about their straight on not doing anything about the hate speech that is prevalent on Twitter at and is an obsolete of a lunch of it it’s not just use in down syndrome and insult to insult somebody else on Twitter its use in town syndrome is a joke I am in a derogatory manner there’s a lot of false information being passed around about down syndrome entre OS two people saying things like oh people with down syndrome suffer from this and the life not worth living also there’s really really negative horrific false information that they’re not doing anything about and then alongside that you’ve got the use of words like the all wit I’m not even going to say you’ve got with that moron question which if you look at the mileage of them that is an insult to people with learning disabilities it’s just absolutely steeped in prejudice and I just think that an international company has the resources and the phones and the team to be able to put something in place to reduce hate speech on the platform and to ensure that it’s a safe place for people with down syndrome and their families and the wider community to be able to use the platform to socialize without having to encounter this hostility towards them and their condition %HESITATION all the loved ones with the condition but it’s very very damaging not just mentally book like emotionally and psychologically if it’s not a nice environment it is very hostile and they really need to step up and do something about it it’s also their responsibility for social responsibility there there is responsibility to humanity and honestly with the opportunity to make a change you have the responsibility to make change I agree I know try to do they seem to pride themselves on free speech %HESITATION there’s a difference between free speech and giving a platform for hate speech the I think behind a keyboard behind your phone or whatever people all the less they feel like they’re a less consequences for them M. if they say something whole style %HESITATION have some element hate speech that throw someone I thank the pops don’t feel that there will be any repercussions like they would be if you set it to someone in the street %HESITATION so for example in England and you can all if you said to somebody I’m going to hit you that is actually cost could be classed as an assault and because the threat of an assault so what do you can %HESITATION if that is done and with the added an incentive of facility because of disability or protected characteristic such as down syndrome and that would increase the sentence so this kind of speech is actually it’s classed as hate speech in all roles and then not doing anything really to combat it in fact what they’re doing is giving a platform to encourage people to sit behind their keyboards under feel safe in being able to be so derogatory and prejudice towards others one I’m a firm believer that all all bullies are really just kind words and and it is it is a shame that people feel like they have they know they don’t feel like they have the ability people now have the ability to set and spew their garbage without any consequence yes and it’s a US based company and we have very similar laws and you do so they really need to be held accountable for their actions and the actions of their users so can you tell us a little bit about what you did when you came across these disturbing tweets on Twitter yes so I was there have been reports in the offensive tweets I see %HESITATION and some accounts as well as accounts of people so attendant awesome down syndrome just to make derogatory comments I’m a recording and then after about three months I thought I’m not getting anywhere so I looked into how to email them to a very very hard to contacted a PS there isn’t a general cost missives email and sent the all you can really do is treat Oct what a safety or whatever so treat them quite a few times and please could you get in touch with Mick Ronson’s count I would like to talk to you about this issue on the platform would like to work with you to let you know what is offensive and damaging walk community would like to meet with you and to discuss how we could move forward with this I didn’t get any response so I did a bit of research I found the C. E. O.’s email address and I sent him I am an open let alone I had already written an open letter I’m not posted on my blog to Twitter I sent him the and he replied saying that he did with the company anymore but I that I needed to email Sarah posted net because he felt that my email was important and she is the head of customer relations so I sent her the open lasted but I am which is basically raise an awareness of how we feel as a community about their standards on Twitter and inviting Hey do you come in contact us in order to look at ways forward to make it a safer place and I didn’t receive a response from not so after three weeks way and %HESITATION I sent my let me open that to to a to an independent news agency M. who’d actually been very helpful when we found a teacher on Amazon a couple of months ago that was derogatory and the M. picked up on that %HESITATION so they put together an article road blocked and they descend into the daily star %HESITATION still haven’t heard from Twitter despite the article so we’re going to give them a little bit of time to see if they do respond %HESITATION I’ve tweeted a few of the people on Twitter if they don’t respond then we’re gonna have to look more steps such as right into our MPs and various other measures because when I like a dog with a bone we’re not gonna stop until someone from for a gets into it with us to work with us to find out what the down syndrome community feel about this and how they can use their resources to ensure that the not more in his speech on that platform well that’s definitely something that I want to follow as far as your progress and and and how it’s going also what can other families do one of the challenges is having a child with a disability or having having a family you have so many hours in the day and things that you have to do so unfortunately the injustices don’t always come to the forefront because you’re busy living your life and it’s very frustrating but it happens because it’s true it’s hate speech and the amount of hate that’s out there it it shouldn’t have a platform and their date there needs to be more love out there I think one of the the main problems with but at the end when the daily star spoke to them %HESITATION they had come back inside to the law of the tweets that I had raised actually didn’t violate the standards so the standards of what they think is acceptable a difference to what the down syndrome community think it’s acceptable and I’d like to know who meet those standards because I certainly wouldn’t say that using down syndrome as a joke is acceptable I’m but they do so why did those standards come from did the come from a wide consultation with the down syndrome community over the middle by people who don’t really know anything about it after I’d like to know and I’d like to know why those standards they feel set in stone the need to raise the standards but before they do that they need to speak to us to find out exactly what they need to be doing to protect people it’s past the point of offensive now it’s dangerous it’s encouraging hatred towards people with disability hate crime towards people with disabilities in the UK it’s odd it’s highest ever level in two thousand nineteen that was the most amount of hate crime ever recorded and its rise near Kanya and given a platform for people to encourage others to be derogatory towards people with disabilities and to make one in Bali is only going to result in people thinking about okay and normalizes it and in ten that makes it seem okay to commit a hate crime and there is no okay our goal we totally agree with you when you mention our community I just can’t help from thinking that this is something that our entire community not just the downstairs our entire society our human community should be outraged about but I guess it does start with the downstream community and and not rich I just wanna clarify it so Twitter thinks it’s okay to use the R. word and I think it’s okay to use down syndrome as a punch line or joke a call clarified that they think it’s okay to use our word because I can’t get in touch with anybody to actually speak to me about what the exact standards are so are conquered by that for you but if you search the always on Twitter it will come up with hundreds and hundreds tweets just from today the retreats I report the hides M. A. I think one of them was a joke about like nobody wants to spend time hanging out with people with down syndrome our report that because I feel that there is a line that is false information it’s prejudiced and it spread in this view of people with down syndrome that falls and they said that that didn’t violate our standards of the tweets that the daily star showed what other was only one account had fund imminently so and they’re not doing much at all and that misinformation really just give such a bad baseline for information in general when it comes to down syndrome for people that are maybe just got a diagnosis or they’re just curious about down syndrome in general and they go to get information through social media and when the first information someone gets is negative information is just going to perpetuate that negativity exactly I don’t have any an infant mental health champion so I do a lot of work around supporting the mental health of mothers Hugh expecting mothers who had a baby and diagnose down syndrome who just had babies from syndrome and the fact that if they were to go into it at old face B. O. social media and search down syndrome and have this kind of hostility Kamal the impact on their mental health on the London for that baby and decisions that they make it’s absolutely horrific it just comes from society that is steeped in prejudice I mean we all know that we’re still not out of the park just as eva of down syndrome a hundred yes ago people with guns and will pull in institutions in England to stop them reading it was part of it eugenicist program the last institutions closed in the nineteen eighties that was the only four E. as a goal so that shows you how little tie in the has been since they were trying to completely eradicate people with down syndrome the prejudice isn’t going to go away overnight and it is that we are trickling through positive stories and re education on the basis of what down syndrome is in twenty twenty %HESITATION that’s not going to happen overnight in this Oct the avalanche of hate speech on social media is only perpetuating the myths and the false information and the prejudice it needs to move into well this yeah in twenty twenty into the modern era and cultural with what down syndrome actually is be inclusive and beta inclusive and accepting society that were meant to be the conversation about down syndrome is slowly changing and it shouldn’t be tolerated that you still have these voices that are so filled with hate and negativity towards something they really don’t know anything about now I do believe it’s changing because I’ve seen a lot of I have seen a lot of change in the last ten years even just being able to have this conversation with you even just having this conversation with you and what you’re talking about what you’re finding and what you’re getting the resistance for people to change that’s what slowing us down that’s what’s what’s pulling us back and causing the friction as because you have ignorance and unkindness out there at that they pick on people that they think they can pick on you’re right I think we need to as well to hop in the forefront of our minds the actuation of this %HESITATION I did just I cheat to what people down syndrome the impact that the house on the lights if people down syndrome the impact that has on my boss like so this idea that it is okay to humiliate on the derogatory about people with down syndrome what does that lead to how many people with down syndrome have a job and you get two percent of the down syndrome population in the U. K. all employment and that is not because of lack of skills that is because of lack of opportunity I’m prejudiced towards the condition and the impact of this prejudice on the the lives of people with down syndrome and how safe they all went out in the community the opportunities that are available to them %HESITATION been able to use social media safely without having to come across a stunt language towards yourself and your condition I’m out shoots towards people with down syndrome and tens of whether one is one of life’s what careers that like things like that %HESITATION and how children are treated in school the importance of funding for children with down syndrome inclusion in schools making schools inclusive we still have a large amount of schools the all inclusive here I am all of this societal prejudice towards down syndrome feeds into the lives of people %HESITATION and that’s why it needs to be stamped out every organization everywhere should be something out in order to make our society inclusive of people with an extra chromosome you retweet I think overall we need a more inclusive society on all levels %HESITATION that’s the main reason we have the battle with Liam’s education is because we walk into a room to set down his supports and they don’t see him they don’t see his potential they see everything that they’ve ever heard and learned that is not based in fact so then we spend lots of time retraining and and proving ourselves which nobody’s life should be based in trying to prove themselves to anybody except for themselves exhausted isn’t it yes and I have to say Twitter has a great opportunity here to be a leader yeah they can take the reins acknowledge that they didn’t know because we all know people don’t now and that’s the thing people do their best but they don’t now right so they can say we didn’t know we’re sorry let’s make some changes so what would be the next step what is something that you could tell our listeners to do to support this cause I think if you’re on Twitter and you see a comment is derogatory towards people down syndrome or is using %HESITATION we’re just language please report to Twitter underneath abusive %HESITATION hateful content he just sent a ripple in so that they can look at secondly if you would follow making chromosomes count which is our chromosomes news we will be tweeting a lot about this and if you would be kind enough to retweet and because I will be talking to and to STC into everything that we do on this if you have a bit more time and I know that will restructure tying it might be good if you could treat yourself a Twitter that you would like them to make contact with Macon chromosomes come to open a conversation about how we can make to address safer place the down syndrome community as this progresses if we don’t hear it will probably get to the point where we might be asking you to write to your member of parliament do you ask them to raise this question in the house of Commons if it won’t respond and then we will have to go to the government because it’s too serious an issue that has too much of a devastating impact on people’s lives to ignore it needs change and it needs to change now well I need to change yesterday ten years ago yes that would be the next step now where a Los Angeles based podcast and I’d say three quarters of our audience is from the United States so that would mean when that time came to contact your congressperson and let them know how you feel yeah but still facing of what we would do isn’t yet so no matter what country %HESITATION and if this is something that you feel strongly about please do raise it with and raise it was try to raise it with the government raised it with the local newspapers within national newspapers we need to really be that people aware of what’s happening I think sometimes people say gonna be over reacting or Europe at the snowflake %HESITATION you she didn’t mean it might not %HESITATION having someone say that to you from outside of the community who doesn’t have the emotional connection to it they don’t get to tell us what is acceptable and what isn’t acceptable if I say that is offensive to my daughter and that is my opinion you don’t got to tell me that isn’t offensive if that makes sense so as of one place we need to be saying this isn’t right this needs to change what you’re saying is that salute truth and nobody gets to tell you how you feel and that to me is such a blatant excuse for poor behavior to say oh you’re just to sensitive now no I’m just the right amount of sensitive for my life maybe you’re just too insensitive and you need to kind of come out of whatever dark ages your end where you still believe that kind of language your hurtful words are acceptable because they’re not it’s cyclical our thoughts become our words and our words become our actions so as a society we must decide what thought what words what actions do we want to cultivate what do we want as our foundation do we want to promote the thoughts behind the words that are filled with hate and anger and negativity the false perceptions and understanding of down syndrome allowing hateful and hurtful language only creates an acceptance that hinders the possibility of change for which use use our words for power to empower for hope and to make the change that is needed so much and humanity right now there are two different paths words have power and we have the power to make a difference you’re totally right %HESITATION because language is a product of our society isn’t it and language has it is steeped in history so %HESITATION all of these words that were used as medical tents so core and more on mongoloid wall uses medical terms and then obviously moved away from being used as medical terms and then became insults and now they used is joking insults and people don’t seem to grasp that there’s still not a weight off making it okay to dehumanize a person with a learning disability by using these words which is not okay at all and nothing lasts the level of understanding that needs to report out disconnect that this inclusive society that will hopefully within towards is not society where you can make a derogatory comments like that and social media platforms should not be given a platform but what about what %HESITATION two people who seek to continue the use of derogatory terms they should be working towards a safe and inclusive society for all absolutely no ritual our podcast is called if we knew then so we like to ask guests if there is something that they wish they knew then if I knew then that Betsy was going to make me into the strongest person I’ve ever been on the happiest person the I’ve ever been in change my entire life for the better I think I would be worried so much wonderful it’s been such a pleasure talking to you and thank you for all that you’re doing for our community and for coming on and sharing your story it’s really been a delight thank you so much for having me %HESITATION it’s been really good talking to you and being able to really solve picked up the reasons why but I need to change thank you thank you so much for the opportunity and I hope to speak to you again and keep in touch.

Please follow us on Twitter @ifweknewthenPOD you can drop us a line on our Facebook page @ifweknewthenPOD or visit our website https://www.IfWeKnewThen.com to send us an email with questions and comments. You can join our mailing list there and get alerts of future podcast episodes. Thank you again and we look forward to you joining us on the next episode of IF WE KNEW THEN.

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