Before I gained communication access, I felt so isolated. I had no community of my own except for my family and some scattered friends. Not only could I not communicate, but I felt so unworthy of friends due to my disability.
And now, I have a thriving community of fellow nonspeakers as friends and a wonderful community of literally thousands of online connections on social media. I still can’t quite grasp it! It is a community of kindness and support, and so far, almost entirely positive – an unusual thing in online spaces! It is a diverse group, and I feel that many are learning from my posts.
So this brings me to the topic of using social media in advocacy. I know many do not want to be involved in social media in any way, which I totally understand. It is a world where human strengths but also failings are amplified, and it can be a space of conflict and misunderstanding and violated privacy. But for those who accept these ugly possibilities and still want to go forth into the potentially rewarding and powerful community- and awareness-building realm of social media, I have some tips to share!
What is social media?
Basically, it is an online platform that allows for sharing of information in an interactive environment, like Facebook, Instagram, Twitter, TikTok, YouTube, podcasts, and blog sites. It democratizes who can share their perspectives, i.e., not limited to traditional sources like newspapers or TV stations.
So, why should we use social media for advocacy? It gives you access to a wide audience. Advocacy communities can easily connect and communicate on social media, and you can quickly and easily share information. It fosters a sense of community among followers, and you can build a community for greater visibility of future campaigns and products. And it is fun if you like to socialize online!
Of course, there are things to be cautious about, too. Ease of posting means that more misinformation and hateful content can be spread. This also means people can leave hateful and hurtful comments on your (public) posts (but this hasn’t happened to me yet, thankfully). It can also be a lot to handle if your post gets a lot of attention, even if it is all kind and good attention. You need to be mindful about what you post because once it is public, you can’t really control where it is shared. And posting and responding to followers regularly can take a lot of time and energy!
My sisters advised me on these considerations before I started on social media. I opted to start with a private Facebook profile that only family and close friends could see, as well as a personal website. Then I started The Ocean and Us Podcast with my sister, and we had a public Facebook page and Instagram account for that. It felt less vulnerable to have a public persona for the podcast versus myself! As my posts got a lot of positive interest, I grew more confident. That is when I decided to make a public Facebook page and Instagram accounts for my public advocacy persona, Danny With Words.
I now like to use multiple forms of social media (often “cross-posting” the same post, though maybe in different formats), because each has a somewhat different approach and audience. But to start, I feel that posting on your personal Facebook profile to your family and friends is a great way to get into it!
Building a community is one of the main purposes of social media. A big part of that is to engage in regular (to the extent possible) interactions with your followers and other social media accounts! This includes replying to comments and messages, as well as reacting and commenting on other accounts’ posts. You can also share posts from other accounts to amplify their message and thank other accounts when they do the same for your posts. It is also important to be respectful in your interactions. Always acknowledge the original creators of the content that you share. And remember to be mindful of what you say!
Advocacy on social media is a huge topic with many technical components (like how to start a social media account, how to make posts, etc.). I wish I could share more here, but for now, here is some advice:
- Your support team will be very important in helping manage the logistics and motor skills involved in making and posting your content, so I recommend realistically budgeting time for this. It takes more time than many assume!
- Guarding your energy is important, so don’t worry if you can’t post regularly. People seem to understand that we are not always able to post new things or interact.
- It is important to be clear about which words/ideas are yours and which come from your support who might be helping manage your account.
- If you don’t want to have your own social media accounts but want to share some information here and there, it is likely that your friends who do have accounts can share for you.
- Having nice or fun photos is very helpful, so ask your support team to help with that.
To demonstrate social media advocacy in action, I want to bring your attention to our ongoing campaign to #EndCommunicationDiscrimination (learn more here)! And please share these posts to amplify our message. You can also follow I-ASC on Facebook and Instagram to learn about our ongoing work and upcoming presentations!
I am a nonspeaking writer, advocate, and friend! I am so grateful to have a great online community with my Danny With Words social media accounts. I am so driven to make the future brighter for all nonspeakers! I am a proud member of the Spellers and Allies Advocacy Network, I-ASC’s Nonspeaking Leadership Council, and the Teva Community Board. I live in Southern California and love the ocean, traveling, food, and building community. You can learn more at dannywithwords.com