I so well understand the comfort and encouragement an internet support group creates. I joined one when diagnosed with cancer in 1998. The support and information are available 24/7. Got me through many a dark night. And still does.
Facebook is not necessary. A couple of volunteers to vet members and a blog to publicize the topic will do.
I rarely post anything on FB, and I know that privacy cannot be relied on there. Still, I have a fondness for it because I know that many get the comfort and support they need because FB created a mechanism for this to happen. However, it is easy to create/use other mechanisms that are as private as the integrity of its members allows.
As a mother of a handicapped child for 40 some years, I agree that meeting places for us mothers and fathers is necessary and useful. Shame on Facebook etc for making it dangerous.
People who remain on any social media should carefully check their privacy settings. Those who want to belong to a group, whether for autism or another issue, can also look for such groups on Google and Yahoo. There may be security issues on those websites as well, but they do provide an alternative.
Why not join or start a subreddit community on Reddit then make a final post on FB asking your support community to join you?
We live a digital moveable feast. The Internet is still one of the few places we can punish the smug exploiters of the world by walking away.
1
I've found great refuge in discovering groups of expats in other countries who have opened my eyes to the rich cultures and satisfying lives they lead, as well as their problems.
For example, I've been pleasantly shocked to find out how inexpensive a French country house with stables, gardens is. How much more friendly the French are than I knew. How many millions of Americans live in Mexico on a fraction of what it costs to live here and how beautiful the land, the people, and the culture are.
The local buy, sell, and find services groups are free and much better than Craigslist and the old expensive, tiny newspaper ads. I've found gardening, birding, literature and art sharing groups, psychological trauma groups; special interest cooking and diet groups - and they are a leap beyond listserv groups or forums.
Some people are extroverted and share freely, others are private and don't share, and many suffer from envy and also vicarious pleasure in the lives of others.
It's the government that has the power to use information against us that I find much more menacing.
I couldn't care less what data Facebook collects on me, as I've also been connected to goods and services which I really wanted and wouldn't have had access to otherwise. So what if Facebook knows what I like and don't like. It only wants to monetize my information to support the structure I get so much out of and make a profit while doing so. Big deal. That has always been the nature of business.
4
Excellent Article Kathleen. But you're right, taking care of
yourself while preparing to jump ship is the healthy way
to go.
1
Yes, you've found an invaluable tool for a very difficult situation. But facebook will be around for a while yet; and I'm sure that whatever kind of regulatory regime (if any) is imposed on it, won't affect you adversely. This because on the part both of regulators and facebook, helping people in your kind of situation will be seen as a Virtuous Thing, and protected.
But should you finally decide for whatever reason you can't use facebook, there are alternatives - Skype and Google Chat just the first two that occur to me. Or creating and uploading your own youTube videos, and others in your group doing the same. Arguably these might be even better at spreading awareness, than facebook. youTube help shows how to do this.
If absolutely everything else fails, there's always landline phone to chat on. It's still there, you know.
I am completely with the author. Facebook has provided an excellent method of connecting that previous bulletin boards and newsgroups lacked. As a mom to my adult daughter with 1p36 Deletion Syndrome, I am able to give and receive support from other families around the world. Yes, this had led to in-person relationships that are invaluable.
If you’ve never been desperate for advice, kind words, or a phone call in the night...because of your child, consider yourself both very fortunate and even a little lacking.
So, it’s true, we can find and develop alternatives for connecting besides Facebook, but let’s recognize it has been a lifesaver for people like the author, like me.
5
As a mom raising a son with Asperger’s in a city that’s thousands of miles from my hometown, the groups I connected with through Facebook turned my life around. Yes I’m sure there are groups outside of Facebook, but the fact is that having such an easily accessible connection to a larger community of moms going through a similar experience really made a difference for me.
4
Of course, Facebook has followers that attempt to implement its espoused public goals. The basic question is whether we need to facilitate the manipulation and mind control that makes money for Facebook in order to achieve the useful purposes it touts?
3
Over 25 years ago I met a group of women on the AOL Adoption Forum and we remain daily pen pals to this day. Our children were not the bright and shiny Healthy White Newborns, but instead were older from foster care, or health risk babies from Eastern Europe. Our journey has very often been painful and the stress is unimaginable. My oldest son is 33 and has been in the state hospital 4 times. I can’t imagine my world without these woman, I believe I might have killed myself.
3
Dear Kathleen, what a timely, encouraging, and sensitive essay you have written. You shared your own personal story to help so many of us. Your title summed up 95% of my "now" reason why I will not leave FB.
I am the facilitator for a private group of presently over 130 bereaved mothers. The idea formed when I could no longer have any more mothers in my "in-person" group in the suburbs of Philadelphia, PA and I felt sad about that and Facebook was another avenue to help. (By profession I am a psychotherapist but by life state I am a bereaved mother myself.) Our group is called “Mothers Finding Meaning Again” because for us to survive we must find another reason to get up each day, put our feet down on the floor and find another meaning for living. (Here’s a bit more about us http://www.maryjanehurleybrant.com/groups/ My book to help others grieving is When Every Day Matters: A Mother’s Memoir on Love, Loss and Life. Simple Abundance Press.
Like the poor parents you wrote about with children who suffer with all kinds of maladies - as do you yourself - we have grown close and feel less lonely. Sometimes I wonder why – as a group – we aren’t more cynical or angrier. Maybe our ability to love and connect wasn’t frightened away with our loss.
In closing you wrote, “It’s not that we need Facebook. We just need one another.” Indeed we do, Kathleen O’Brien, in many forums and you have offered us one here with your honest pen so thank you from the bottom of my heart.
12
You do not need FB, deleting was easy to do.
1
Mark Zuckerberg has said that he will follow the strict European General Data Protection Regulation (GDPR). Read about it here:
https://www.engadget.com/2018/04/12/facebook-eu-gdpr/
And here:
https://www.google.com/search?q=General+Data+Protection+Rules+(GDPR)
My question is this: If Facebook follows the GDPR rules, is that enough? If not why not? What more than the GDPR would it take to satisfy you or is it enough?
I have been on Facebook for over 10 years. I have always used it with caution, recognizing that my privacy is important. I never imagined, and don't imagine that most people ever imagined, that a foreign country would use it to attack our Democracy. Now we all know they will use it and all social media to attach our country. Something needs to be done, is GDPR enough?
Mark Zuckerberg is revealed to be the Piped Piper of Hamlin's Internet. He has successfully captured the hearts and minds of the Children and now demands payment..........
Kathleen why not a Facebook comments like messageboard with a clean presentation?
In the meantime I recommend you create a Proboards messageboard for the group. It's free with ads but nowhere close to being as intrusive as Facebook i.e. they don't collect your personal data. You may see an ad for an item you bought or browsed on it but lots of sites besides FB have that like Ebay and you have the option to pay for an ad-free messageboard. All one needs to register and log in is a username and an email address he/she could create just for the board. The moderator can ban an abusive member by banning the abusive member's I.P. address.
BUSINESS DAY
How Profiteers Lure Women Into Often-Unneeded Surgery
By MATTHEW GOLDSTEIN and JESSICA SILVER-GREENBERGAPRIL 14, 2018
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This story is on the Frontpage of today's Times. Data mining is rampant in the medical industry. Avoiding , banning, booing facebook doesn't change the fact that they didn't invent it. and they may not be the worst offender either.
You CANNOT delete your Facebook. You can only cancel it. You can still sign in any time, and all of your old posts will be there. Truly frightening. Apparently the meaning of the word "delete" has morphed over the last few years.
4
Remember, facebook needs you. It does not exist without you.
1
I quit. And, I haven’t felt this good since I quit smoking!
2
There are support groups for anything one can imagine both in your area most likely and definitely on the internet where one does not have to be abused by the likes of Zuckerberg.
First of all, thanks for writing this article and your continuing attention to unique issues of parents raising children with autism.
In short, my belief is that the negative impact of Facebook on children with autism significantly outweighs the positive attributes for parents, who can actually find these support groups outside of the FB system.
Children and teens who have autism already face an uphill battle from exclusion in social engagements. If you are parent of a child with autism, you know the pain of your kid being disinvited to birthday parties etc.
Facebook exacerbates this problem by superficially messaging that everyone is having a great time in life except for you - if you are a student with developmental disabilities or any other difference for that matter. Unintended consequences, perhaps. But, I for one am an advocate of "jumping ship".
Then, of course, there is the attack on our democracy that FB allowed, but that's another matter.
2
Good example of how Social media, the internet in general brought "isolated" individuals into a community. The ability to provide a platform for impromptu support groups was a positive of the 'net itself. What a relief the author must have felt.
The author presents a solid example of how important the 'net has become to us...even if we don't need a traditional support group. Like me. Simply looking stuff up to better understand, to ease my concerns, and alleviate stress during a particularly difficult time in my not so distant past, was a great help.
But I was never a FB user..instinct or paranoia kept me off and out of that universe. By nature I don't seek groups/community, I'm not a share'r, but I understand it when people have obstacles such as the authors and do need to reach out. Especially when their time is burdened and going online can be done at any time of day/night. What a great resource.
Im not so confident Congress understands whats at stake with Social Media's general exploitation of its users. Or will come up with a decent means to regulate it. As they are too beholden to the notion that "business" should not be regulated unless they commit visible crimes. And even then they are hesitant to prosecute. (As we see by the Trump appointments rolling back safety regs,etc)
I hope there is an entrepreneur out there right now developing a better alternative FB,et al...
Personally, Zuckerberg and company need to be knee-capped.
2
I don't have nearly as good a reason for staying on FB but I do enjoy many groups to which I belong: ancient Greek history and mythology groups, opera groups, local politics groups. I also enjoy sharing things that I think are interesting and valuable, in addition to the ever popular pictures of my garden and my adorable grandson. I have a friends who's an excellent artist and shares her latest creations with us on FB. In sum, I have much more reason to stay than to leave at least at this point.
5
This precisely why the best and most simple regulation that can be imposed on Facebook is to require interoperability. The social graph is inherently the structure of society and therefore the fundamental infrastructure of social communications. Facebook acknowledge that it is a utility that must be heavily regulated or agree to permit users and their social relations (their graphs) to easily migrate to outside of its surveillance system. Zuckerberg will fight this tooth and nail, but it's the right thing to do and fully justified by antitrust principles.
It's no that difficult to set up a listserv, hosted on a private server, to serve the same community function. It's what we did before Facebook came along, and some of us still use them.
3
Mental health private groups have also helped many people. Just the feeling that "wow I thought I was the only one......" feeling is enormously comforting.
4
Dailystrength.org is an excellent support forum that addresses many physical and mental conditions.
While my needs are nowhere near as important, I too find Facebook groups a valuable tool. I am the proud owner of a classic MG, and am able to connect with other MG owners across the world via the groups. I have received and given valuable advice on common problems, commiserated and celebrated over the pains and victories of ownership of these beasts, and generally engaged in wonderful conversations with fellow enthusiasts from as far away as New Zealand.
If Facebook knows I like small cars and somehow uses that information, I find it a small price to pay for the advantage of connecting with these fine people; so I have no intention of leaving.
2
I, too, am the parent of an autistic child. I prefer to participate in local groups and online forums dedicated to families affected by autism. I left Facebook just around the time the data scandal broke, but I left for different reasons. I found the size, scope, and reach of Facebook to be to broad to really help me feel a sense of community. I also found it hard to watch so many people posting the best of their lives: vacations, graduations, and the like, while our family struggles to keep our son healthy and safe. I did not like how it made me constantly reach backward to sustain relationships from the past rather than take that time to build relationships locally that can feed my life now. I feel much, much better since I left. I hope this writer will find peace with breaking with Facebook. It is definitely worth it.
11
I belong to a FB closed group for Israeli higher education. There's is a parallel email group.
I find the FB group much more interesting and beneficial and participate when I want to. The emails I mostly delete without reading.
As for privacy, firstly the group I belong to is in Hebrew. But I have no problem with the world knowing what I think about cheating in the writing of seminar papers et al.
I put nothing of significant personal nature on FB that I would not put in a NYT comment.
I recently downloaded the FB information on me. Pretty boring, I mostly post newspaper articles. I don't even look at ads, much less read them or use them.
4
Mark Zuckerburg has said that he will follow the strict European General Data Protection Regulation (GDPR). Read about it here:
https://www.engadget.com/2018/04/12/facebook-eu-gdpr/
And here:
https://www.google.com/search?q=General+Data+Protection+Rules+(GDPR)
My question is this: If Facebook follows the GD{R rules, is that enough? If not why not? What more than the AGFR would it take to satisfy you or is it enough?
I have been on Facebook for over 10 years. I have always used it with caution, recognizing that my privacy is important. I never imagined, and don't imagine that most people ever imagined, that a foreign country would use it to attack our Democracy. Now we all know they will use it and all social media to attach our country. Something needs to be done, is AGFR enough?
FB has worked well for me except for my continuing difficulty in finding posts I have seen before. I defend myself by copying what I can and emailing it to myself but the workaround is not very workable.
I depend on FB to read articles I haven't noticed. I have a few FB friends who I don't actually know who I rely on. I have a few other people from the other team and I am interested in what they choose to post. I haven't unfriend them, I like seeing what they say.
My relative on the other side once about my secret group that I was just hearing one side of things and I got regal. I said that is not how we look at it.
So there are too many dumb videos but some are funny. I don't buy much, and maybe FB has picked that up, I don't feel harassed.
My basic info is out there, and Google has more of it than FB. I am as dumbfounded and angry as anybody that other people have been tipping the election. But I think I am more likely to be harmed than helped by withdrawing from FB. My friends may drop off, leaving less for me to see, anyhow.
If there is a consensus among right-thinking people that FB has to go, that's ok but I don't think that I would move easily to a better platform. Mark had better come up with something to avoid his constituency from splitting up.
2
Facebook can't exploit your information if you don't give it to them. Provide a fake (and really old) birthdate, don't enter in any info like your high school, etc. Nothing. Don't "like" anything either, as they use those likes to build a profile of you and target ads back at you. It would frustrate the heck out of Facebook if everyone did this, because they would have to admit to their advertisers that they don't really have much data on their users, and they can't really target ads any more.
But in Facebook's defense, I don't really sympathize with people that share all of their "private" information with a huge corporation and then complain that they are being used. You don't want anyone to have your info, don't give it to them. And most of the author's accusations of Facebook's negative behavior is not by Facebook itself, but by users and advertisers using Facebook in ways that offend people. Sure, Facebook should do a better job to prevent and police that, but don't be naive that this is something unique to Facebook. If Facebook disappeared tomorrow, the bad actors would simply migrate to the next tool to create mischief.
Maybe oddly, I suspect your experience are a powerful argument *against* FB: It's precisely the indispensable emotional, psychological and social salve that it, and it alone, can provide you that makes it so dangerous. FB simply should not have that level of power in your life, the ability to preserve or destroy your wellbeing the way a drug pusher might. Indeed, you & the other parents of special needs children seem quite addicted as if Mr. Zuckerberg's product were a drug you require to get through the day, & as such you & your (actually very brave, & I commend you & wish you and your child/children the very, very best!) community are an extreme version of the phenomenon.
Your needs are so real, legitimate & important that no single company like FB should determine whether & how those needs are met. It's great, amazing & fantastic that you got plugged into these resources, communities & interactions, but it would be vastly better to not rely on FB for these necessities. When your very survival (even emotional survival, no small matter) depends on a billionaire & his computer program, your autonomy is dimished & he/it gains inordinate power, easily comparable to a drug dealer's.
I'd like you to still be connected to those amazing people & resources, but not depend so much on FB for what you need. Your precious child teaches how fragile well-being can be, & complete dependency is tragic without reciprocal love. You love your child, but FB loves its revenue, growth & power.
7
I am the parent of a child with autism who ran a Facebook page for Autism Speaks. I am now off Facebook. Everything you say here is true--most importantly, your conclusion.
2
In the early 1990s the web was full of bulletin boards for people to share experiences. Whatever they were. For sufferers of ailments to people with an extreme interest in motorized model yachts. This is fine and good.
Facebook has obliterated these bulletin boards. It wont let you post without giving away your future, and dont forget, that of you son.
The next generation will be privacy hounds. And they will be very very angry with this cohort of parents who publicize their private lives through Facebook, such an unethical company.
1
It sounds like it works well for you and why not stay with it? Even if you delete your account (I deleted mine) it's basically closing the barn door after the horses have left.
Facebook is just one company among a huge number of companies. Google, Amazon, Yahoo, Linked In and a huge number of other companies all have huge amounts of users data. Facebook stands out because it's looking like the Russian interference in our elections used Facebook data to interfere with out elections.
Facebook is great for the purpose you describe. Of course it's definitely good to make sure your security is set properly.
4
Start an email group. Or find one. I found one for moms of special needs kids, years ago, and it was a lifeline. (I never felt comfortable with Facebook, so though I have an account, my personal info there is mostly lies and evasions.) With a big enough email group, you can toss in that wee-hour question and get your Australian answer, without that queasy Facebook feeling. Contact me if you need any leads.
I would love to leave Facebook. It annoys me and gives me anxiety! While my reasons are more shallow, it still shows how insidious this platform is. I would no longer be able to play words with friends, which i love. There are multiple other apps you can use ONLY through Fb. Its really creepy that WWF and others have access becausE you want to play a game or date online or whatever.
2
I quit Facebook and still play Words with Friends.
The premise of Facebook is fine and it is the definitive site to exchange ideas, share, communicate, etc. There certainly are many ways to glean the information you’re after but so are there many ways to buy groceries, but it’s a whole lot easier to go to the super market as opposed to spending all day strolling from shop to shop. Facebook is a good platform that has grown too fast without regulation. I’d even advocate that it really should be a public utility, not a private enterprise. Let’s keep it but regulate it for the good of all!
2
Never used it, never will. But, in some circumstances, I DO understand.
Let's be careful out there. Your decision, your risks. Best wishes.
2
People proudly commenting here that they don't use Facebook, anyway, remind me of those who brag about not watching TV. Why comment, then? To feel superior?
Those of us who have been enjoying Facebook for a long time are feeling the pangs of possibly leaving the platform.
Via Facebook, I've re-connected with old friends, established health and political groups, found new friends and even have been hired for freelance jobs. Facebook has been a very enjoyable and useful part of my life. Obviously, I'm disgusted by the recent news, but the benefits of the platform make leaving it a hard decision.
4
Hi, Andrea!! My comment comes right after yours!! I forgot to make paragraphs so mine is impenetrable, unfortunately. I'll join a new group you invite me to, but how about the other people on my FB?
2
How delightful to see your comment, and also have been enjoying your FB posts!
Thank you for this article and shedding light on a good Facebook has done. As a parent of an autistic child, I know how important relationships with other parents are and how alone you feel without them. I'm not on Facebook and think it is harmful to society in general, but I recognize this very important function it serves.
That said, I do want to highlight a point you allude to by referencing the puzzle piece as a symbol of autism. While Facebook can connect people, it can help them spread harmful information and reinforce ablest ways of thinking about disability. Parents mean well by starting organizations to 'help' kids, but often disability can be presented as tragedy in attempts to appeal for donations and attention. Autism is a great example of this. Autism Speaks represented autism as scary and sinister in the '90s, and this representation has been hard to shake, leaving a bad impression about autism in the minds of most people who don't personally know someone with autism. Autism Speaks seeks to help people with autism, but wanting to do good is no excuse for doing wrong by representing autistic people as mysterious and missing. What's more, Facebook can be a place for anti-vaccers to give voice to their belief that vaccines cause autism (they don't).
So, while I wouldn't want to dismantle these important groups, I do think we need to recognize how they might contribute to ablest ways of thinking about disability and the spread of misinformation.
10
I confess to being a liberal who thinks that government can do good. It's too bad that we're so caught up in fear of the deep state that we can't really imagine how government or governments (internationally) could provide services that help people connect to share ideas and information.
Regulation is part of it, but the wild-west experience of social media shows that ruthless people jump in to exploit. Perhaps the Post Office, which appears in the Constitution is an analogy that could be pursued.
No you can't just trust the government, but it is becoming increasingly apparent that market forces and the profit motive have their own consequences.
3
i never joined because i didn't want him to know everything about me. i did, finally, to be able to post a question to a vendor whose only presence was on fb. they deactivated me when i refused to provide personal info. thankfully, i had been able to deactivate my dad's account on his death. i imagine i could have done that from outside. there used to be interest groups in usenet, and web sites for special interests. i think he just made everybody lazy by offering to do all the work for us. maybe i'll join after they're regulated.
We've come to collectively better understand the role of FB vis-vis the 2016 elections, in particular the leveraging of our individual online behavior. The "likes", vulnerabilities and predilections of plenty of "boring" people have been used by state players in alarmingly nefarious ways.
The well intentioned communities you describe might be surprised to discover that the data generated by your participation in these niche groups is yielding immensely profitable data for FB. Imagine the profiling potential for private insurers, not to mention big Pharma in both providing and denying you and your child services and benefits. It is only superficially that your concerns and vulnerabilities can be considered quantitatively boring.
4
There are groups which are important to me (retired pastor) on Facebook including two clergy groups where ministry dilemmas are discussed, support and ideas shared.
Beyond that, for me, the group of 'friends' I have formed are community. I am very selective about friend request I accept (generally people I actually know or with whom I have something significant in common), so after 10 years I have 'only' about 120 friends. We have theological, political, and cultural discussions - share jokes, life experiences, and offer support during rough patches. For now, I have no intention of going anywhere.
As to the privacy crisis: I downloaded the records FB has on me. There was nothing terribly concerning, but then I have always been very, very careful what I have let them have. I have long valued privacy over convenience.
2
How sad this is to read. How desperate and alone women are as they live in the service of children. This is the faceless example of the addictive nature of Facebook, especially for vulnerable people who, in effect, live isolated from others, from basic information, most importantly neighbors, town centers, a local community of shared interests that you can see touch and feel-- know its real. Perhaps this is why we have become so desensitized as people. We think the online world is actually necessary. While it creates connections, it provides a false sense of security, drives our need to feel part of something bigger, that should really come from within, and localized personal connections that can truly be supportive. It would seem, any meaningful "groups" and "connections" would move offline once established, if real. But its all superficial, if not a lie. I deleted my account in 2012, only to learn this week, Facebook still likely collects my data and makes it available to third parties, a true Hotel California. After I "checked- out", the really sad part was learning that some of the members of the "groups" that I did trust were paid/incentivized to post, like, and share links. I felt used. As women, with our own collective economic prosperity challenged, why give content away to Facebook or any site, without being paid? No platform should be exploitive, nor should it come at the expense of having real human connections it sounds like the author struggles without.
4
For many, the only way to connect with a ''support group'' is through digital means, and for many the easiest place is where most people congregate.
Of course there are other places, but they are harder to find, or do not have a ''platform'' that makes it easier for all.
One has to balance all sorts of decisions in our everyday lives that may come with principles or scruples.
Do we support any business that goes directly against them ? How much cost ( literally and figuratively ) comes with such decisions ?
We all need to try a little harder, if we are going to break the hold of conglomerates and the ''titans'' that run them .... and us.
2
I am 100% agreement that social interaction is important. And I appreciate the perspective of the author with regards to special needs children. But please do not confuse Facebook as the only way to interact socially, even online internet.
If your objective is to be connected to the largest network of advertisers and marketers in the world (and I think the author's objective is NOT), stick with FB. Else, do a internet search and you will find plenty of functionally equivalent alternatives.
My favorite is Diaspora, which is nearly identical to FB in terms mode of use but is peer-to-peer technology, so you don't share data with anyone other than your social network. It is, however, self-hosted, so it does require efforts to maintain, and may not be the right choice for all. Never the less, the point is that, despite what you hear in media and from friends, FB is NOT the only means for this.
By all means, interact socially online, but as long as this "there is no alternative" attitude persists, FB effectively has license to continue to operate as it does: begging for forgiveness (for the 7th time mind you) rather that asking for permission.
4
Just wanted to say that there exists privacy focused alternatives like ello that you can switch to for specific groups. FB has been bordering at creepy for a while and with their recent focus on linking health data to shadow profiles I think it's time to make a move.
3
Before Facebook, there were email list-servs that functioned similarly. Maybe see if a core contingent from your group could migrate.
Your social world doesn't have to be dependent on a company this unethical. There are options.
9
Excellent piece. Thank you, Kathleen, for the thoughtful appraisal and for the intelligent and perceptive indication of how we might move forward and better from the Zuckerberg morass!
2
As a parent you may feel better using Facebook, but trust me that given that autism is a type of social anxiety disorder, your children will be absolutely mortified as they get older that you shared their private medical information on such a public forum. You may be caring about your own well being at the expense of theirs. But it wouldn't be the first time Facebook is praised as altruistic while being covertly narcissistic.
By the way, for anyone not aware of this, Facebook was never meant to "connect" people. The origin of the word "facebook" is a book published every year by ivy league boarding schools (Zuck went to Exeter I think, I went to a different one in the 80s) with a photo of every student's face. Its use is largely punitive, a low tech tracking device essentially. Its is given to every business owner in town as well as faculty etc (students are generally not give copies), and used to identify and report students who are misbehaving or caught at a party or trying to buy alcohol or cigarettes etc. Facebooks are never used to connect people. They never were. Zuck knows that. He just tricked a gullible public.
5
The concern about sharing a child's medical and personal information is very real. I have avoided sharing on other FB interest groups because the information will be there for ever (it's unclear as to whether FB even deletes it).
The need for parents of special needs children to connect with each other is very real. The fact that the author and other parents feel the need to connect on a predatory dating mining platform like FB just shows how how impoverished our public arena really is.
A 'playful' article about owning a home in upstate NY in the NYT this wekend, in which the author freely quotes from various FB posts of homeowners' groups in the area, shows how frail promises of privacy are.
While it's true that many autistics have anxiety, it's not true that autism is a social anxiety disorder.
1
Like the author, I'm not ready to leave Facebook. I waited a few years before joining and was favorably surprised by its benefits. These include reconnecting with old friends from years ago who I had lost touch with. Also, I like the concept of groups for people with common interests. The support groups she mentions are certainly valuable. I've joined 2 facebook groups for fans of The Far Side (Gary Larson cartoonist) where members post and discuss favorite cartoons. These groups strictly forbid any political discussion and do not hesitate to remove those who violate this rule. I think some of the responsibility for facebook privacy rests on users themselves. I'm astonished at how much personal content people put out there. People, please don't list on a map where you are at a given time or post too many photographs (especially of children) or share (sometimes through phoney surveys which might ask you questions whose answers may allow someone to steal your identity. Could go on further about oversharing on facebook and other social media.
3
Facebook gathers information about its users well beyond photos and status updates. Even when you're not posting to the site, it's tracking you and learning about you, in ways that they try to keep invisible.
6
There is absolutely nothing special about Facebook for this purpose. Except that it's got 2 billion users. I participated in an Alzheimer's caregiver support group using Yahoo Groups many years ago. (Anybody remember Yahoo Groups?) I guarantee you can find an alternative to FB for support if you want.
But there it's also nothing wrong with using FB. Just be aware that someone is watching everything you do on Facebook. It is mostly FB that is watching. They provide your info to their paying customers. And not only are you getting targeted ads - you are getting targeted news, targeted fake news, targeted fake quizzes, targeted lies, targeted fake outrage, ...
9
I tried a few Yahoo groups years ago--they were beyond awful: disorganized to the max, ineffective, short-lived. No matter what you say about Facebook, it has been successful in getting people together in an organized, coherent manner. There's no comparison. Btw, if you think there's another, better alternative to FB which won't use ads, you're dreaming.
4
I recently started significantly limiting my FB visits. The one group I consistently check? My undergrad's page for parents of differently-abled kids. If you don't recognize the isolation this author describes, please don't crow about how you'd NEVER deign to go on social media.
17
I heard Mark Zuckerberg say it will take two years to make Facebook secure. I deleted my account. Final word: Zuckerberg and Sandberg: Lean Out
4
I recently visit my Facebook account which I set up ten years ago and rarely visited. As I looked through my account, I was surprised at how thorough their user survey was -- places I had lived before, the city where I was born, my schools, my favorite things of various categories, etc. Strangely enough, I could change the name in my account, but I could not change my birth date.
The problem is not using Facebook to connect. The problem is we give it all the extra information which are not needed because it asks.
I downloaded my data and was surprised at the number of companies that downloaded me because I hardly used my account. So it is now deleted.
5
About 10 years ago, on the urging of friends, I joined Facebook. A week later I deleted my account.
Facebook is not necessary to make the connections this author needs. It is, instead, an insidious evil that worms its way into our lives.
We all need connections. I found out two years ago, at age 68, that I have a heart condition that will require massive open heart surgery in a few years. I need support.
But I don't need Facebook.
Facebook is the devil, masquerading as your friend.
9
Surely there must be a company willing to offer a similar service on an ad free/data tracking free paid platform. Since it is so valuable to so many users - support for parents with disabilities, helping find long lost relatives, etc. - I think they would surely get some customers. Personally, for me it is about having control over my life. Whatever free benefits Facebook offers is not worth giving up my power and exposing myself to fraud and manipulation. #goodbyefriends #helloselfempowerment
1
There is such a service: it's called WeChat. It's the main offering of a Chinese firm called Tencent. And (as someone who's lived in China for several years) it's superior to Facebook in every way imaginable.
I know, I know -- say "China" and people starting rolling their eyes about the Communist Party-dominated government (and its authoritarian policies). But the thing I've found is, that when it comes go privacy, at least, things in the West aren't any better (and might well be worse). And the application itself really is hugely better (not just in my opinion, but in the opinion of every expat I know over here): Wechat doesn't NEED to know every detail about you, because its business model focuses on providing conveniences. For those conveniences that cost money (say, topping up one's subway card, or making a retail purchase) it takes a tiny cut.
Anyway, the second I log back in on Facebook to connect with friends/family back in the USA, I'm immediately skeezed out by the hyper-inquisitive nature of the product (thanks, Facebook, but I don't NEED your suggestions as to whom I should friend).
2
Thank you. Have never used Facebook, but I use Twitter. I scrupulously avoid the "official" Twitter App. I do not need "suggestions of who to follow" and "promoted Tweets". Thanks Echofon!
2
I find this social media platform great for keeping in touch with family and friends. I've had people tell me to "pick up the phone." Well, I have a huge family and wide network of friends. FB is the best way to remain in touch.
If you don't like FB, don't use it. If you do use it, be careful what you post and be careful of what you "like" and groups that you participate in.
13
My brother is autistic. He's very high functioning but when he was a child back in the 60s and 70s we would have given almost anything for his condition to be understood by others instead of his being treated like he was contagious. It would have helped us greatly (us being my parents and I) to know that there were other families facing the difficulties we faced.
One very good thing about Facebook has been that if you pose a question about something someone is sure to be able to point you in the right direction. Back when I was child I was told not to discuss my brother or his schooling with anyone. My parents didn't want to have to deal with the pity, the condescension, and the misunderstandings or the professional blame.
There was no one we could ask about my brother's obsessions. No one to laugh with when he did something totally unexpected but hilarious. We had no one to rejoice with when he was mainstreamed or when he graduated from high school. Why? Because back then autism was viewed as the parents fault. Social media and the internet might have connected our family and provided us with information that could have alleviated our worries. We still have worries about my brother but we're no longer alone.
32
Thank you for opening up about what you and your family went through. It must be doubly stressful to not only navigate through life with a special needs child, but to have to do so feeling stigmatized.
Our neighbors have an autistic son and they are doing everything they can for him. Luckily, they have resources, from a supportive school district, to a therapist, to a therapeutic dog, to an understanding community network. His parents and sister explain off the bat what this child is like, how he behaves, and what not to do with him. Sometimes he connects and socializes, other times he is withdrawn and talks to himself. Animals draw him out in a good way. We get it and accept him. But how much harder would their lives be if they were isolated?
As for Facebook, well, I haven't been on it, but I figure that social media platforms aren't inherently bad or good, it comes down to how they are used and regulated. As with these comments sections, people can use them to be engaging, encouraging, honest - or they can be rude, contrary and pointless. It's what we bring to them.
7
1. facebook facilitated genocide in Myamnar. 2. Zuckerberg last week had the audacity to take credit for flagging messages meant to incite violence there, when it was actually human rights groups who flagged them. these 2 items far outweigh any benefits. i can not, after hearing about the atrocities and seeing the pictures of women, children, men and the elderly Rohinga refugees stomach being a part of the machine that is facebook. Run, don't walk from this platform
6
I strongly encourage everyone to quit Facebook. Leaving it has made me immeasurably happier. You will not miss the ghosts it keeps in your life.
5
I agree about the former friends, childhood schoolmates, exes and other connections that are often best left alone under the rock where they’d been hiding until 2010, but I still find it useful for community event updates and for connecting around one of my hobbies.
4
You need to take care of yourself and if quitting FB is that hard then don't do it until you have found enough alternative forms of support. Don't stop being kind to yourself just because you think it's the politically responsible thing to do.
6
I quit Facebook about a year ago and feel extremely good about the decision. Since quitting I have felt liberated from the obnoxious superego that Facebook represents, as a platform of user-generated, demagogic "virtue signaling." Based on my own personal experience, I cannot recommend quitting this extremely unethical and perverse platform strongly enough.
I knew for a long time that Facebook was a source of personal unhappiness, but felt entrapped by the medium. I didn't want to lose all my contacts. But there are other ways to connect besides Facebook, and I've not felt cut off. In fact, you CANNOT quit Facebook, but only de-activate your account, meaning the contacts are there waiting for you if you do need to reach someone you otherwise can't.)
Facebook produces an illusion of connection that is in fact further isolating. I've not at all missed the ghostly avatars that Faceboob keeps in one's life.
My newsfeed on Facebook was an oppressively conformist echo chamber -- presenting a bunch of un-nuanced commentary from lay people who had not properly bothered with details and complexities. This has only further degraded the quality of political reflection from the already base quality of thought one generally encountered in the mass media (which in turn were increasingly forced to lower themselves to the new prevailing standard). What's more, Facebook personalized the news, leading to bubble effects and a hyper-moralized politics of personal calumny.
4
The negatives for Facebook far outweigh the positives - that said, people should not be forced or shamed off FB.
Facebook has had 14 years to self regulate - and we can clearly see how that worked out....it’s time for the US government to step in.
Facebook is a monopoly (80% of Americans use Facebook) which needs to be broken up and/or heavily regulated re: political advertising, hate speech, authenticated users, foreign governments and bad actors in the United States.
23
I stopped using Facebook because I was tired of reading all of the 'accomplishments ' of non-autistic children getting posted ad nauseam by their parents. Speaking as a Dad of a 14 year old with autism, I find LinkedIn to be infinitely more useful for finding support groups and other people who can understand what I need.
5
Like you, I am not jumping off Facebook. Like you, my reason is related to children, though unlike you, mine have no special needs; they are just all over the country in three time zones.
I also am not much of a knee-jerk reactor. I fully understand what Facebook is and is not, do not put my full faith and trust in it, use my privacy options to the fullest extent, and let the chips fall where they will.
My guess is the billions of users will make their own decisions about whether to stay or go, but the advertisers have not shown any reluctance or reticence. Facebook is still selling and they are still buying.
3
Powerful insight:"It's not that we need Facebook. We need each other."
6
We used to call online sites that connected us with others going through similar (usually health-oriented) issues "forums." They offered a certain amount of protection and privacy, and if people wanted to interact with another member of the forum, they could leave them a private message. We could post PubMed links and our own stories, update the other members, and get support from those who had traversed our same path. I always thought Facebook was an inherently weird idea, and never participated. When trying to navigate a difficult health issue for your child, forums were (literally) life savers.
15
I have a medical condition rare enough that I will probably never physically meet anyone else dealing with it. I belong to 2 closed Facebook groups, each with a different emphasis, that are hugely helpful, both factually and emotionally. In the past (and currently for something very different) I've used forums and bulletin boards. They just flat out don't work as well as Facebook, where at any time of the day or night there will be at least a couple of people to talk with in real time.
These groups have members from all over the world with very similar day to day problems and very different medical systems. A Facebook group seems to be easier to find and access than dedicated web sites, and Facebook is ubiquitous so the groups are readily accessible all over the world.
I have less than 30 'friends' on Facebook, all but two of whom are/were friends in the real world. The two 'extra' friends are friends of friends who seemed interesting enough to deal directly with - much the same as physically meeting people through mutual friends.
I used to design databases I've never had any illusions about privacy, or general security on the internet. I suspect Amazon knows more about me than I do. I'm also good at critical thinking and cross referencing facts so 'fake news' is easy to ignore. Facebook and all of the internet are tools that I find well worthwhile.
8
I closed out my FB acct in 2009 and I wonder if they are still tracking me. The only social media I use now is email and land line phone. At least I'm not getting a boatload of worthless advertising anymore. Even though I have illnesses I would not share online. There are in person therapy groups I attend that my doctor steered me to. I do not trust FB.
9
Do you get telemarketing phone calls?
I have twins, and I found that connecting with other twin parents was very helpful in the early years, so I truly get it.
But there are many ways to do that - back in 2003 when my kids were little we had a twin parents email listserv. It worked just fine. Of course that sounds old fashioned, but the point is that people with particular needs can always find ways to connect.
Facebook is truly overrated. I am glad that it is not part of my life.
8
Thank you for sharing! I live with chronic illness, and social media - particularly Facebook has kept me connected to the outside world and friends and family during times when I can not connect in person. It also has introduced me to others with my condition as an adult, which I did not have as a child. I would like to quit, but the virtual friends I have made help me through tough times.
5
I left facebook, and I don't miss it. I appreciate why leaving is not an easy thing for others to do, and you provide a great example.
One approach is indeed to find and move to an alternative platform. Another is to use Facebook for this purpose and only this one. You limit your exposure and incentivize change on Facebook's part, while maintaining the value that is so important to you.
I do think that people like me, who have left almost all social media far behind, need to be understanding of those for whom it has provided difficult to replace value.
9
Generally speaking it’s important to remember that other people are leading their lives with other reasons than yours for the choices they make. Many of these choices are not “lifestyle related,” as this piece explains very well.
6
Ms. O'Brien has beautifully articulated an aspect of Facebook that we often do not appreciate.
As someone with experience in dealing with "orphan illnesses" (diseases that only a few people around the world have), the advent of the Internet (in general) and Facebook (in particular) has been "a GOD Send."
This importance then begs the question, what did "the Facebook Thought Police" find objectionable about "Diamond and Silk", but not any of these medically important "electronic support groups?"
3
It appears by the comments that most people didn't read the entire essay. By the final paragraphs, she's arguing for finding an alternative and leaving FB en masse. It will most likely take a boycott-level of desertion for the platform and the entire surveillance-profit model to change.
32
As with most things in this world, there exists the negative along with the positive and we can accept the challenge of improving things like Facebook rather than throwing up our hands and giving up because it is flawed. Because of Facebook, my family reconnected with my niece from whom we had been severed for 24 years. She was there at the bedside of my mother, her grandmother, during her last months and made our family whole again. Cousins across many miles connected and reconnected in what has been truly a death and resurrection story for our family.
15
Many people commenting here don't seem to have read the article. The author ends by saying that we may have to delete Facebook, but that the special needs communities, particularly those with lower incidence, will need to find another way to maintain their support networks. I'm a special needs parent too. There's no question that the private special needs parenting groups have been indispensable. And I'm not just talking about my mental health. Some of the advice I've received and connections I've made have meaningfully changed my son's lives. It's important that people who are privileged enough not to rely on Facebook for this purpose understand our perspective and need for this lifeline--if not through the Facebook platform, through something similar. We who need this for more than cat memes deserve to have our voices heard. Thanks for writing this article, Katie O'Brien.
17
These groups exist outside of Facebook already, and in fact, in many cases, Facebook is actually keeping special needs parents from connecting in person.
There are growing numbers of local, state, provincial, and federal organizations for any and every illness, disease, and special condition. Many of those organizations host their own meetings, telephone support groups, online conferences, and forums. A lot of those forums were taken down in the rise of the Facebook group.
One of the bad things about Facebook is the lack of buy-in required to create a group. No one knows who originates a group, who administrates it, and who is most involved in it. When the Trump administration first attempted to shut down the ACA, special needs groups all throughout Facebook were flooded with "parents" and "concerned citizens" posting about how people need to pay for their own kids, how special needs kids are a drain on society and a hazard to others, and how Obamacare wasn't working.
Support groups are wonderful and helpful. But they need to be real, and the best ones are those who can be tied to legitimacy - because on Facebook, no one knows if you are a parent, a child, a facilitator, a physician, a family friend, a drama-seeker, a troll, an information-scraping bot, or worse.
The lifeboats have been there. Facebook just has better packaging.
45
Facebook can cancel these groups at a minute's notice and there is no recourse. What about list serv groups?
5
Was on FB for less than two years. Yes on occasion there would be some information that would pop up that was useful but it also can suck up so much time. It was the 2016 election and the aftermath that finally made me delete FB. The insanity of the political fights and ignorance of how government works drove me to want to beat my head against a virtual wall. After deleting it (and twitter) I am much more engaged with real people again and life is much calmer when not engaging in the back and forth with people I don't know and don't care about.
12
You can easily unfriend or hide the ignorant from your news feed. There's nothing on Facebook that forces you to interact with people you don't know. If you're happier, then I'm glad, but it's not necessarily an all or nothing option.
Never joined. Never will.
13
Well that was helpful. Thanks for sharing
7
I hear this parent's need for support, encouragement, and connection, but if the data mining isn't enough to make people leave Facebook, what would it take? Facebook has allowed hate speech, fake news stories, political ad micro-targeting, trolling by falsely represented accounts, and they've never acted in good faith about it, until absolutely forced to do so. Would you trust someone like that to hold your personal data? Not me.
If this isn't enough to make one leave Facebook, nothing is enough. Decentralize and break up Facebook's repository of data and access to eyeballs. There are other digital ways to connect that will be more secure and not monetized so a company can continue to expand its reach. You can find another method to use. Or have someone create a mailing list that you subscribe to. How big does the warning have to be? How much more unease do you need to feel about events that have transpired over...years? When you learn what a company is, believe it. Don't accept a bundle of excuses, apologies, and promises to do better, like a gullible or abused person. Believe the evidence of your eyes.
P.S. Facebook owns Instagram and WhatsApp, and who knows how the platforms interact with each other.
22
As an U.S. immigrant in France Face Book expat groups have been a invaluable lifeline. They have unsnarled the complexity of immigration bureaucracy in a way that I am sorry that generations before me didn’t have this amazing tool.
However. There’s always a however. There’s a dark side to all this help. Face Book creates bubbles. Expats schmooze with expats. But to be fair, it’s not the only platform creating bubbles. The entire internet does that. I remember traveling in Europe before the digital era and being forced to learn and think in the language of the country I was in. Not anymore.
And then there is the amplification of immigrant anxieties — to the point of actual wrong advice. There are the scammers and spammers who lurk around specialized expat pages — like for finances and taxes. And worst of all, there are the expert “expat fixers” who set up hugely subscribed-to pages, who rule those pages with an iron fist — and who you dare not cross.
Living abroad sure ain’t what it used to be.
9
I quickly ditched the expat page of my city as it was for the most part people offering 'services,' people complaining endlessly about local conditions, and people wanting to remain in their expat bubble.
...and sob about how they miss Krispy Kreme and Cheetos. Yes, I’ve un-followed lots of expat pages, and will only re-follow when I have a pressing issue.
I refer to people whom I have met via various Web groups as my Web friends... and they can become important supportive people in one's life. One had posted images I needed to understand a particular portal featured in my dissertation; given its remote location I was more than grateful. Do what you need to do. So glad you found support.
6
I recommend downloading you info. Easy to do. Go to settings, it is at the bottom of the choices. I use FB seldom, but it has helped me connect with people who share my health condition.
However, I am going to delete my entire account. After I saw the immense amount of info they had on me ( for example, hundreds of events that I had attended), I was really freaked out. They also told me that Cambridge analytical did indeed get my profile, not because I had used their sneaky app, because one of my 500 friends had.
Although I have never cared that much that advertisers had my info, when I saw the list of all the advertisers interested in me and how accurate my profile could've been created by that list, oh my. It was more than I could take. I will create a new Facebook account in time and do very little activity, and primarily read. I hope indeed that a competitor comes along and that more regulation does also.
4
Hate to disillusion you, but Facebook will track whatever you read as well as what events you attend. If you don't care that is your choice, but it taints all of those you have friended as well as all of those who have friended you.
3
As a retired person living a fairly reclusive existence due to health issues, Facebook is a form of entertainment for me. It's also been been a source of enlightenment (and disappointment) for me regarding the political persuasions of some of friends. I never had taken any of the odd little "quizzes" that show up, figured someone might have been fishing for information. Guess I was right.
21
Can someone explain why taking a test that shows off your knowledge of, say, modern western art gives any marketer useable information? I suppose it’s aggregate data, not just one silly quiz, that paints a picture of what my consumer and other interests might be.
One thought: answers to these quizzes, even one as seemingly innocuous as this one, can be clues as to potential passwords one might use, as well as potential ads to show a person.
When you sign up for the quiz, they request access to your FB data. In agreeing, you grant it to them.
I find Facebook more helpful than harmful myself as well, for different reasons. It is many things to many people, most importantly providing a sense of community to those of us who are social “misfits” in a variety of life situations. I am less concerned about the privacy issue, given that I know that whatever I do post is going to be shared with my 1000 friend list, so I edit myself accordingly. If lawmakers are truly concerned about digital privacy, they would be grilling the executives of Equifax and other companies that collect far more important data, as opposed to vacation photos or political memes, without our permission whatsoever!
7
The question I have is why you would have 1000 'friends' on Facebook. I have less than 30, all of whom are geographically distant family or former real friends who have moved away and grown apart in all the ways that friends do over decades, but who I have found or been found by many years later through Facebook. We have found, through Facebook, that we still have many things in common and it is pleasant to know each other again in this peripheral way. I have added 2 new people after we saw and liked each other's posts through mutual friends.
3
Armoret - I have been on FB for almost 10 years now and accumulated friends along the way outside my circle of family and “real life friends”. I didn’t set out to have such a large friend list, but it seems to grow as I “meet” people on special interest pages. The beauty of the platform for me is that it allows me to connect to a broader array of people than I would be able to given the limitations of my work and family caregiving obligations.
4
Amy, that's been my experience, too. FB has brought much enjoyment and learning to my life.
1
Indeed. I am in a secret Facebook group for women who share a particular health issue. We’ve been chatting for 10 years in the group. Yes there are other online forums but we’ve found FB to be the most user friendly.
21
I'm grateful for the opportunity to be in touch with old friends, and to make new ones. My hope is to stay in touch now without a service, or corporation. Perhaps it's all been worth it - I have little to steal, and skew any survey in which I'm included. But, as far as Needing Facebook...well, if something truly helps you, you can walk away from it in better shape, whereas if you Cannot leave it without falling down again, it's a Crutch.
3
So this is just laziness. It’s a software program. It’s not your life. And the fact that it is also malware / spyware / hacker bait which is destroying civil society is of no consequence to you. You have a weapon that serves your purposes but ends up hurting many other people. Make your choice. Find another way.
39
That sounds easy for you to say.
4
Well good for you...
I don’t use fb. Those of us who don’t find this commentary silly.
The only things I've found Facebook groups useful for are my family, my research, my career, and my social life. Other than those, it's been a complete waste of time.
Of all the government and businesses entities that has "behaved badly", to my thinking Facebook is way down on the list. So I'm not going anywhere. And I suspect that many of those who claimed that they have or will drop Facebook won't be gone long. But to each their own.
14
Left Facebook and permanently deleted my data (as far as I know) sixteen months ago. I left because Facebook was warned repeatedly, by the US and other countries, to police their platform better and Facebook didn't make any changes. Facebook gave one massive shrug. They offered friending, but sell access to your data to whoever comes calling.
It would help if other platforms stopped making available a prompt for people to log into something using their Facebook account, because many of us no longer have them.
10
Help me understand what is left after “my family, my research, my career, and my social life” that makes Facebook “a complete waste of time.” It seems you covered every important aspect of a life...
7
Pretty sure that is sarcasm.
Kathleen, I imagine most readers will understand why you haven't jumped ship. Facebook sounds like a lifeline and if that helps you and your family, it's logical that you would embrace it. This doesn't mean you necessarily approve of the fake news shared nor the access to your data. It does mean that you're doing what you need to do to be a parent.
27
How I relate to Hanna O'Brien's piece! The old AOL forums were a lifesaver to me when my son was diagnosed at age 2 with sensory processing disorder and multiple developmental delays. Now that he's a young adult, I am on Facebook helping other parents and sharing support and strategies a page for a book I wrote as well as on other pages and in groups. Whether it's a mom telling you "Same over here!" or offering a strategy that worked for her, or having the chance to say, "I feel for you. I've been there, but now my son is doing beautifully" and pass along wisdom, Facebook has been invaluable as AOL forums and listserves dried up.
But... if you started a page, not a group, to get a supportive community started, now any post will show to 1 or 2 percent of your followers unless you pay to boost it. If I start a group, I might never get to everyone to let them know we had to shift to a different space.
Then too, I worry about parents sharing personal stories and details or photos and videos (even with their kids' faces pixilated out) to get insights from other moms--"Is this stimming? Does this tantrum look sensory or behavioral?" Help from Facebook in cultivating these communities for parents of kids with special needs would be such a nice gesture as so many try to keep the communities on Facebook strong and supportive. Offering greater protection for privacy would help, too.
2
Congress has my tax money and uses it for whatever they want, even threaten to take away things to which I am entitled. My vote doesn't really count as we are stuck with the electoral college. There are alot of uses of my stuff of which I don't approve. I like facebook. I'm willing to let them have my data.
8
I'd rather see the will of the majority prevail.
The Internet had discussion forums long before Facebook was a thing. I suspect you won't have to look too hard to find that there are already a multitude of non-Facebook support groups for parents in your situation. Despite being an early adopter, I stopped using Facebook six years ago and haven't looked back. You can #deletefacebook too!
45
Facebook is a lifeline for the special need parents out there, who need to find a dentist, a babysitter, a friend. There is no other way vital information can be shared so efficiently, so comfortingly. And you can share your child successes and yes failures. And where to go to camp. friendly tourist spots, how to swap outgrown equipment. Yes they sold data, but so does CVS. Yes they allowed lies to be spread, but so do certain media outlets. The first years of telephones led to privacy issues but we overcame them. Like the atom bomb, there is no way to put this genie back in the bottle. We just need to recognize its power and make some rules.
16
A lifeline? I had no problem finding dentists and real friends (not virtual friends) long before farcebook existed.
Same goes for now. Never used it. Never will. Still have no trouble finding a dentist or anything else.
27
If it’s that valuable would you be willing to pay for a platform that provides all of the benefits without the dark side of selling your data? The problem is that nothing ever really is for free. You’re paying for access with your data. If there’s enough people willing to part with actual money for the use of a platform there’s an opportunity here.
10
Dear Concernicus,
I think you missed the point. People with rare health conditions can't easily find people with the same conditions. That's the whole reason it has been so useful to use FB. I agree though with the author that it may be time to consider creating other online places to meet.
2
Thank you for this perspective. It is right on target and highlights aspects of my life and concerns that I have had about FB.
There has to be a better way. Cheryl Sandburg are you listening?
And therein lies our challenge. Facebook has behaved badly by allowing data to be used for nefarious purposes. Yet, what it offers users are untold thousands of places to go for support, inspiration, or simple connections. Given the revenue generated, offering a paid, data collection free subscription would likely be expensive. For now, my account has been deleted. When, if, Facebook cleans up its act I will consider a new account. Thank you for our inspiring op-ed.
10