Stuttering Social Media Survival Guide 101 – Grant Meredith

About the Author: Grant Meredith is an academic and futurist within the School of Science, Engineering & Information Technology at Federation University Australia. He leads the applied Technologies for Empowering People for Participation in Society (TEPPS) research program where enjoys making assertive technologies to empower people who stutter.

Everyone with an Internet connection has the ability to communicate via a social media platform (e.g. Facebook, Twitter, Instagram etc) and as the theme of this conference implies such platforms enable you to “Speak your mind”. Expressing your thought and opinions through words, pictures, videos, sounds or combinations thereof. But with virtual freedom of expression comes great responsibility within the near lawless and inconsistently regulated realms of social media. For as the expression goes with “great power comes great responsibility.” But navigating social media, in the case of this paper, the use of Facebook groups, you need to have an understanding of the general culture(s) that may govern a group which is in fact an online community that you may wish to become part of. On Facebook there is a small range of long-established groups for people who stutter that offer support, advice and diversity of opinions. I am a long standing member of the administrator (admin) team of a group called “Stuttering Community”. But in fact each group itself has its own overall aims and enclosed cultures. For a new member of a group these online cultures at times can be confronting, discouraging and combative. At times new members struggle to fit into the norms of a group. To aid new members to fit into an online group and speak their mind I will write this brief survival guide with some strategies to consider. I will also add in some notes to help the group veterans and admins to encourage new members to interact and feel included.

Rule #1: Terms of Reference. First check to see if the group has a terms of reference (ToR). The ToR as with any committee or working group in the physical world will outline the purpose of the group, a basic set or rules for conducting yourself within, what topics are welcome/unwelcome and a list of admins. This will help you to quickly understand if perhaps this is the group that you are looking to interact within and its cultural boundaries. There may be specified groups though that do allow some more extreme topics that you may wish to discuss and it is best to search around. Some groups may also like you to refrain from posting off-topic conversations and casual discussions. If the ToR is not obvious then either post a question asking about one or find the contact point of one of the admins.

  • Veterans please keep in mind that not all new members have read the ToR before making their first posts nor in most cases does an FAQ exist.
  • Admins please try to ensure that if a ToR exists then make it prominent and informative. If a member breaks the ToR then private message them to discuss. I however will usually always ban and block a member quickly who has extremely violated other members.

Rule #2: Feel free to ask. It is ok as soon as you join to start asking questions that are on topic to the aims of the group. But do not post too hard and frequent straight away. Too many questions on day one may irritate veterans within the group. But do not be shy of introducing yourself and explaining what you may wish to find out (except Rule #5) or discuss. Also refrain from swearing, using abusive language or being insulting. You could quickly be banned or unwelcome within the community. Keep in mind that admins are usually skilled at identifying people who join just to irritate other members or intentionally cause trouble. Be open to the answers that you may receive as opinions may be very diverse. Keep in mind though that you will not find a stuttering cure in a group. If an instant or quick cure existed then support groups, speech therapies and alike would cease to exist.

  • Veterans please keep in mind that a new member has no idea what questions have been asked before they have arrived. You will see replication of questions from new posters. Do not reply that this is the case, or that the question is old and boring. The member has come for support and guidance, not instant abuse.

Rule #3: Feel free to reject. Often new members are instantly flooded with friend requests from established members motivated by all reasons. Most commonly some to be friends, others to try to be friends in a sexual fashion and others wanting to sell their stuttering treatment or management services to you. Use your own judgement concerning who you want to and who you do not want to friend. If any member sends you disturbing messages in public or private then let the admin of the group know. Keep in mind that it is very simple for you to block other members from messaging you. Simply being in the group does not imply that you must accept another member’s invitation to become friends and/or private chat.

  • Veterans all because someone joins the group does not mean that they want to instantly be your friend. It is also the case that if they do accept your friend request then they may not want to instantly see a picture of your naked torso from the waist down.

Rule #4: Topics of Taboos. Unless framed by either the group title or ToR topics like religion, politics and sex are often not allowed. Just like common dinner table etiquette and party conversation manners these are usually conversational areas that can stir quick debate. Also these topics, unless stuttering-focused, may annoy some admins and members due to their lack of relevance to the group. If you are passionate about discussing these topics, perhaps stuttering support groups themselves are not the best or most knowledgeable groups to join. Having said that, I know that some gendered and religious orientated stuttering groups do exist if you search hard enough.

Rule #5: Pick-Ups. Groups, unless stated, are not dating sites. Often members will get offended and quickly angered if a new member (usually heterosexual) posts wanting to know if there are members of the opposite sex willing to talk to them in private.  Usually seen as a sign of desperation and this will instantly indicate the general motives behind the joining of a new member. You have to face the fact that usually you are single for a reason and perhaps some of those less attractive qualities of your personality may be reflected within your desperate posts in attempt to find love. It is also very bad manners to join a group and then start private messaging people asking them strange questions about their dating life, sexual orientation and in some cases if they are willing to receive pictures of your naked anatomy. Admins once alerted will usually act very quickly to either severely warn or ban you. You have to also consider that all because a person stutters it does not mean that they will be attracted to you as a person who stutters yourself. In fact, most people who stutter that I know who are in relationships of various degrees have significant others who do not stutter. Do not slip into the trap of thinking that because you stutter that other people who stutter will automatically fall in love with you and life will be simple and happy forever more.

  • Admins veterans please keep in mind that new members who do this are often very desperate for affection and often lack related social skills. Often their dating attitudes are aligned to the teen movies and/or adult movies/magazines that they indulge in. At times these behaviours may be also due to cultural differences, but they are no excuse. Please take complaints very seriously in terms of other members receiving unwarranted and creepy messages.

Rule #6: Not all that glistens is gold. When joining a new group it is not uncommon for other members to perhaps pepper you with the praises of techniques or programs that have assisted them or that they have devised (or franchised). These are usually not professional speech therapies or evidence-based programs. Often this takes the form of directing you to a program-specific group. Some of these people are good hearted wanting to share a program that has worked for them and at other times they are people who wish to both help your speech and to also financially benefit from you. In some cases arguably their reasoning is just to financially benefit from you. This becomes a minefield to navigate and may confuse you and in fact arguments may circle around you concerning the validation of such approaches. Most times you will only ever hear the praises of such programs and rarely a negative comment. This is due to a number of circumstances. Some programs for example ban members/clients from saying negative comments on social media about them with the threat of revoking membership. In some extreme cases I have heard of some programs even threatening legal action to ensure a successful public face. Also some members who have perhaps not benefited from such programs may refrain from mentioning the fact that they have undertaken them, due to perhaps the shame attached to their speaking situation not improving long term. You need to find a balanced view of a stuttering management system and often that does not exist within the group itself. Do not take anything at face value, and look to the greater Internet for more guidance. The Internet is awash with opportunists and scammers. In actuality many programs out there seem to almost be repackaged versions of existing ones. You need to carefully investigate the evidence base yourself, and establish your own understanding of a program’s validation. If veteran members PM you spruiking programs or their services again beware, engage with caution and contact an admin.

  • Admins you must establish the rules within your group around who can post what and how. This is a hard task to manage and often the answer lays in an “all or nothing” approach. Keep in mind that anyone that you let into a group has access to its membership list and often opportunists PM members. Make sure that if that happens that you act quickly.

Rule #7: Diverse membership. Often I see the membership of stuttering support groups moving away from simply being that of people who stutter. Usually the ToR will spell out who is welcome to join. Some groups may wish to be a support haven for people who stutter only. Yet other groups will be open to practically anyone joining from friends, partners and parents of people who stutter through to medical professionals and beyond. Check with the admins early about membership criteria and decide yourself who you are comfortable to discuss stuttering issues with. Perhaps some groups are not for you.

  • Admins keep in mind the composure of your group’s membership and why. If a person who stutters comes into a group expecting only other people who stutter to be within it, then you need to be careful about membership. The community itself needs to feel safe.

Rule #8: Parents beware. Often parents of children who stutter are becoming more aware and interested in joining online support groups. In fact a small amount of childhood stuttering specific groups exist. Parents you must also beware and careful around what information you may be told about childhood stuttering. So many myths are still spread out amongst such groups by misinformed and sometimes ignorant people who stutter themselves. All because we stutter it does not mean that we are actually that knowledgeable about why we stutter. Some myths for example that stuttering can be contagious or that early intervention will cause stuttering to be worse for a child. Both myths lack valid supporting evidence. My advice is to seek immediate resources from well-known support organisations and professional speech & language professionals first and foremost. You want the best available information you can find to support your child through the confusing, frustrating and life changing years of stuttering onset and development.

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Stuttering Social Media Survival Guide 101 – Grant Meredith — 12 Comments

  1. Rule #9, be consistent in your approach within the group. If someone gets a warning or banned for pitching a product, then everyone who does something similar should get the same treatment. I don’t think the status of an organisation, such as non-profit status, should determine this judgment if the rule is to not offer a product for money.

    Great list of rules!

    • I could not agree more and consistency in such forms is so hard to see achieved. Especially with large admin teams and blurred lines

  2. Given the structured layout of an online interest group, have you thought of pairing veteran users with new admins? A type of buddy system where older members could introduce and assist new users how to appropriately navigate and interact with the group. Our group has utilized this type of system within our academic graduate program and seen efficient communication between incoming students and their respective veteran students. Efficient communication includes: minimized redundant questions, increased trust and confidence to communicate, and a sense of belongingness to the community.

    • Hello USC MSP, I like the idea and I think it depends on the platform and membership numbers. The dispersed global nature of Facebook for example makes that a little difficult also. But I like the idea for sure.

  3. I really appreciate rule #9, warning parents to be wary of getting misinformation. Most people shouldn’t need that in this day and age, but I can see that when your child has a new stutter you may be desperate and believe more than usual. I also think that there should be more consistency like you mentioned in rule #7. People should know who is allowed in the group and exceptions should not be made. These guidelines were really well thought through. What inspired you to write them?

    • Hello Robiste1, misinformation and the spread of false facts and unsubstantiated theories (often by people who stutter themselves) in my opinion is one of the largest threats the stuttering world faces. I was inspired to write them because I am part of an admin team myself of Stuttering Community on Facebook and I also deal with research ethics and how to address researcher concerns with advertising their studies on social media.

  4. Hi, Grant.

    What a great post about social media! These rules are all so clear and helpful. Thank you for writing this. I am just curious, what kind of growth have you seen with these types of groups over the past couple of years? Is there still a lot of engagement on Facebook even with so many other social media platforms?

    • Hello Restrepoci, I have still seen a large growth in existing FB forums in general. Many others start up but the problem is they all seem to replicate the same discussions throughout. In some ways we do not need more general online support groups as some platform markets are flooded. I will however say that increased membership does not always correlate with increased interactions or discussions. But some members are happy to be readers and not typers. Members join for all different reasons.

  5. Thank you for sharing this! I think in many ways, our technology seems to infiltrate our lives with reckless abandon and we are left with no guidance on how to navigate it. This is a really wonderful list to reference. I appreciate how you’ve explained why each of these rules should exist- especially how under served children’s peer forums are in this realm and that PWS need a space without concerned parents and others involved, and also how create a safe space in an online setting meant for discussion, not dating, taboo topics and negativity. In regard to the massive amount of misinformation, would you consider disclaimers or an admin to fact check? Allowing misinformation to spread seems to threaten the validity of any forum or group..

    • Hello Allison and thank you for the feedback and thoughts. The problem with fact checking is that not all admins have the time or knowledge to follow it all up. Also most forums are not aligned to any single form of technique or therapy. Often though more widely known myths are usually shot down fast by other members or not responded to. The education I think really needs to start at the member level and they should themselves investigate more. Large forums are full of all different views and opinions. We just want to avoid the posters who are opportunistic to in wanting to line their own pockets with quick money. The whole WWW is a minefield of opinions and fake news.