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My adult cousin with Downs has a weird Facebook.
February 26, 2014 5:34 AM   Subscribe

My 22-year-old cousin with Downs syndrome has a Facebook account. I'm worried she's posting inappropriate things.

My cousin Becca and I grew up pretty close and we're still good friends. (I'm a few years older.) She has a Facebook account. She previously had a Facebook account, and mostly posted about celebrities and followed celebrity imitation profiles. She does not know that what she was following were not actually, say, Zac Efron. Her profile was deleted by her parents a few years back because she started to have issues with telling real life from things like Twilight on Facebook. It was recently reopened.

Becca has been more and more interested in relationships and sexuality over the past five years. My understanding is this is a normal thing, and that a lot of people with Downs have relationships. She currently is in a relationship with a boy her age who also has developmental disabilities. When you talk to her, she makes a lot of references to kissing and boyfriends, and asks a lot of questions.

Becca posts a lot of Facebook, pretty normal stuff. She has conversations with her boyfriend, talks to family and friends, and so on. But recently, it's been popping up on my feed that she's been tagged in sexual or explicit My Little Pony drawings. Which she then comments on. I don't know the person who is posting these pictures. Some of the photos are...fine. Some of them are disturbing and give me the creeps. Becca will comment things like "yummy" or "i love it". Her boyfriend also comments similarly innocuous things on these explicit drawings. No one in the comments says anything inappropriate to her. She engages, from what I can tell, of her own free will.

I feel really uncomfortable and embarrassed about this. Her parents are her Facebook friends and have access to her profile, but I'm not sure how often they're checking. Maybe they just didn't find this alarming. I'm not sure how much I'm allowing my understanding of disability to mess with things. If it was another cousin, even one who was 17 or so, I would maybe send them a short message explaining that everyone can see what they're doing on Facebook and then remove them from my feed. With Becca, I don't think that would work, because I don't think she understands how or why it is inappropriate. I also don't want anything to happen to her. But she's an adult, and presumably she gets a say in what she wants.

What should I do? How should I approach this? Should I just be fine with the situation?

I live across the country and am not in frequent contact with any adult members of that side of the family, but it wouldn't be really weird for me to contact any of them.
posted by quadrilaterals to Human Relations (9 answers total) 2 users marked this as a favorite
 
Her parents are probably glad that it's so easy for them to keep tabs on what she's up to.

Commenting on explicit MLP fanart may be kind of embarrassing, but it's not actually harmful. If it bothers you, just hide that kind of activity from your feed.
posted by Narrative Priorities at 5:39 AM on February 26 [4 favorites]


quadrilaterals: If it was another cousin, even one who was 17 or so, I would maybe send them a short message explaining that everyone can see what they're doing on Facebook and then remove them from my feed. With Becca, I don't think that would work, because I don't think she understands how or why it is inappropriate.

I think you should talk to Becca first. She might know this kind of stuff is inappropriate to put out in public, but she may not understand the way Facebook and tagging and privacy filters work. She might not realize you (and her parents) can see these posts that she is tagged in -- I know lots of non-developmentally-disabled adults who aren't able to grasp it right away.

Once you let her know that everyone she is friends with on Facebook can potentially see these posts, I think you have to leave determining the appropriateness of that up to her. As you say, she is an adult and is entitled to make her own mistakes.
posted by Rock Steady at 5:46 AM on February 26 [7 favorites]


My 62 year old developmentally disabled aunt loves social media and uses it pretty extensively (albeit awkwardly). Occasionally, something goes wrong (either technically--like deleting a family member from the feed--or socially). In this case, I bring it to the attention of my mother, whom she lives with and who is the first line of responsibility for my aunt's well-being.

I suggest you do the same. Mention to her parents that you've seen some weird postings or that you thought it was awkward. If they ask for help or express an inability to understand Facebook, you can offer your thoughts on how to manage personal settings. if they don't, then you back off. If it makes you uncomfortable to see it, you manage that on your end.

I don't really know anything about your relationship with your cousin. Familial relationships vary greatly among families, especially when one family member is disabled or otherwise unique or othered in the family. But from your question, it sounds like you are not engaged in the care for your cousin or daily management of your cousin's life. That is, it does not sound like you are trying to find a good model for managing her social media behavior, but rather than you are concerned that she is embarrassing herself or you. In that case, you bring the situation to the attention of the person who is responsible for helping your cousin navigate the world, you do not try to correct the situation yourself.
posted by crush-onastick at 6:00 AM on February 26 [18 favorites]


Depending on everyone's relationships, I would have my mom gently raise it with her mom. This only works if there are existing good relationships, so that cousin's mom wouldn't take offence, and that this is unlikely to be something that would cause conflict between cousin and mom. I don't have a good understanding of all the issues involved (and I also have an adult cousin with Downs), and neither does my mom, but my cousin's mom is pretty on top of things and has access to a lot of community resources. She would be a good barometer of whether this is something to ignore, or something where she might want to discuss with cousin. (I wouldn't raise it myself because in our family, that would be considered kind of meddling, but my mom is sort of the matriarch and has the ability to well, meddle, without anyone minding.)
posted by chocotaco at 6:31 AM on February 26


I have an adult relative who is disabled and very social and very sexual. The mix of active sexual interest with poor social skills (in terms of not understand complexity and how to set boundaries) and poor impulse control is a problem that is common in the community. Social workers and caregivers have seen this before and have tools.

Can you talk to your aunt and uncle to make sure there's a professional in Becca's life who is helping guide her with her boyfriend and her facebook?
posted by Lesser Shrew at 6:40 AM on February 26 [5 favorites]


I think it is important that you (general you) have these discussions with her and also that you help her put measures in place that may protect her from predators. Explicit fanfiction is awkward but much worse things could happen to a vulnerable girl.

It is important to have someone established as a person of trust - not necessarily someone who intervenes every time Becca posts a fanfic, but rather someone who keeps an eye on her to make sure she's okay and who will gently say "Becca, it's a bit uncool that you keep posting explicit stuff because Grandma sees that stuff" if she posts really, really explicit things. You will want someone who understands the value of not constantly scolding (as your cousin may decide she resents this and will push against it) but who will be seen as someone cool and trustworthy. This could be a family member, it could also be a trusted family friend.

Whoever it is, I think you need some sort of framework.

I have a cousin with developmental issues who frequently posts inappropriate things (sexually explicit material plus very graphic violence). Currently I have D. unfriended as I just cannot stomach some of the things she continues to posts - but I know my mother is very much in contact with her and has set herself up as a trusted guide to what's right and what's wrong (I am in another country).

My mother hangs back but she is there - and she is there for a reason. My cousin ended up in a brief relationship with a convicted paedophile she befriended on FB. She went through a phase of "you are all jus' jealous" when people tried telling her it was a very bad idea - but now D. knows she can trust my mum for relationship and internet behaviour advice. I think the key is that my mum doesn't scold D. but talks to her like an equal.
posted by kariebookish at 6:41 AM on February 26 [4 favorites]


My main concern would be who is tagging her in these pics. I would also wonder if these are just sexualised MLP stuff or actually sexually explicit. Then I would probably offer to help change her settings so she can't be tagged without her OK, and perhaps not even then. That's looking for trouble.
posted by Iteki at 7:29 AM on February 26


Yeah, if you can be sure that her mom will deal with this rationally (ie understand that this is a boundaries problem and a "take away the internet or the boyfriend" problem) then I would just mention it to her. She may not be seeing that stuff because she's not on Facebook enough.
posted by chaiminda at 8:48 AM on February 26


Part of it is the Greater Internet Fuckwad Theory. When you have public messaging and anonymity, you're going to get this.

I have my daughter, who is 6 and has Down syndrome, living publicly. Until such a time as when people with disabilities are accepted as people with real feelings (and that's going to take a while, considering the state of society since it's just so easy to mock someone who isn't likely to fight back), this won't stop soon. Therefore, it's part of our job to be advocates just as it is Becca's job to learn to be a self-advocate if she is ready and capable of doing so.

So you can imagine my anger when I saw that someone had taken a picture of my daughter and used it in a potato-like meme and posted it on Fark. But what can you do? Drawing attention to it in any way other than "wondered when some moron would do that to my daughter. Guess it was your turn, bro." is just inviting the b-tards to jump on board and add some gasoline to that fire.

So yeah, talk to her folks. Find out if she needs self-advocate training. And for her sake, love her, advocate for her and treat her well.

MeMail me and I can tell you how not to do it.
posted by plinth at 11:44 AM on February 26 [1 favorite]


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