David Feit is a Facebook aficionado. The 39-year-old electronics firm assistant with Down syndrome has exactly 5,000 Facebook friends, and uses the social media platform like an open diary. The self-proclaimed “Funcle” (or Fun Uncle for those of you who aren’t in the know) first caught my attention by seeking me out as a friend, and then engaging me in conversation with each “Like.”
“Half of my Facebook friends I went to school with. Some are old friends, and went to school with my sister. Some friends live in my old neighborhood. I have a lot of parents with children with Down syndrome on Facebook” David described when we chatted via phone the other day.
I have about 10 teens or adults with Down syndrome that are my Facebook friends. I love seeking out self-advocates to get their perspective on Down syndrome and life in general. Only a few of those friends engage with social media in an truly independent way like David, and fewer still use it to advocate for themselves and others.
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“I think that David has learned a lot about the world from being able to navigate the web. He learns about people, places and things going on in the world. This is mostly the world of sports and movies, but he also reads about injustices in the world and it really upsets him and we talk about it,” explains his mother, Suzanne Feit. “David has had a lot of practice advocating too. He’s advocating for everyone in the world. There are no boundaries. He will advocate for himself, and everyone else who he thinks is being wronged.”
One of David’s recent post:
It’s obvious when you read David’s posts that they are authentic, and somehow he knows more about Facebook graphics than me. “I roll with technology changes. I’m nothing like my father, who cusses at technology,” laughs David over the phone. David’s mother started an assistive technology nonprofit when he was 4-years-old, but it was David who taught her how to Facebook. “My mother taught me and then I taught her on Facebook and texting. I’m the king of texting. I take the best picture of my nieces and nephews. I just know how to capture them. They’re my world,” David explains.
Let’s face it, Facebook and other social media platforms are here to stay. Facebook has led to the fall in power of tyrannical leaders in some countries, as well as a political groundswell in our own. It can provide a new world of independence and advocacy for people with disabilities.
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Especially individuals with Down syndrome, who can sometimes struggle with intelligibility. Self-advocate, John Franklin Stephens, used his Facebook account to share a testimony he gave to Congress pleading for increased funding of Down syndrome research. The thought-provoking video has been viewed millions of times, and is now spreading through the news media and social media in countries where Down syndrome is being effectively eliminated through prenatal testing. Read here.
But what about parents’ legitimate fears that social media may be misused or unsavory characters may take advantage of their child?
Advocate and parent of a teen with Down syndrome, Jawanda Mast, says those are fears all parents must face. “Our 17-year-old daughter, Rachel, wanted snap for a while and her dad helped her get that set up a few months ago. She does a lot of that on her own and has really enjoyed being able to connect to her friends. We watch her social media to be sure she is being responsible and others aren’t trying to take advantage of her. Facebook is not cool with the teenage crowd, but if she does want it we can help her with it,” Jawanda explains.
“What’s going to work on literacy more than being on the web and writing to people. I trust the universe to help and don’t live in fear. I do monitor his comments on Facebook when I see something that is inappropriate. I tell him that he must be appropriate and we work hard to help him understand that he is responsible for his actions and his words. Not much unlike the rest of the world right now, don’t you think?” David’s mom, Suzanne Feit says.
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My own 5-year-old son, Troy, is often better at navigating the iPad than I am. Although I limit his screen time, I realize that it’s that very same technology that will likely some day help him live independently like David. “I would encourage people with Down syndrome to have a Facebook, because you can communicate with friends and family about how blessed you feel to have them in your life,” David says.
Do you allow your child with Down syndrome to use social media or technology? How has it made them more independent or led to inclusion? How do you monitor their use of technology? I’d love to hear your thoughts below.