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Why disabled people can’t afford to #DeleteFacebook

Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
edited April 2018 in Disability news
I read a great article recently by Dr Frances Ryan about the importance of facebook and social media to disabled people.

The Cambridge Analytica scandal has been in the news and said it now believes up to 87 million people's data was improperly shared with the political consultancy firm Cambridge Analytica.

This has led to many people starting a campaign to #deletefacebook - encouraging people to protest against this scandal by closing down their facebook accounts.  Dr Frances Ryan wrote for the Guardian about how this campaign doesn't appreciate disabled people and how social media can be a lifeline.

social media image
"I can’t help but wonder if only privileged people can afford to take a position of social media puritanism. For many, particularly people from marginalised groups, social media is a lifeline – a bridge to a new community, a route to employment, a way to tackle isolation.

“Without social media, life would be so much harder,” says Philip Green, 56, from London. Green has arthritis in his spine, as well as mental health problems, and lives with severe pain that means going out to socialise is often impossible.

“I’m relatively lucky to have some really good close friends, but my most frequent communication with them is via Facebook or WhatsApp,” he says. Because he lives on disability benefits, he can rarely afford a trip to the cinema or lunch with friends. “On top of this, if I get a flare-up of pain, all plans have to be cancelled.” 

You can read the full article here.

What do you think? How does social media support you? Can facebook help with isolation and make connections? Let us know your experiences.

Scope
Senior online community officer

Replies

  • [Deleted User][Deleted User] Posts: 1,756 Listener
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  • sandyp196sandyp196 Member Posts: 133 Pioneering
    I feel even more excluded from my family since fb. Before fb I had no idea how much went on on my family that I wasn't included in, invited to, or part of. It's very hurtfuL.  I also have to put up with seeing them post the obligatory 'we support mental health, aren't we enlightened and fabulous' when I'm there saying 'hello, real person here with real issues that your ashamed of'. 
    On the plus side I have made some great friends through fb. Life is less lonely and I actually met my best friend on fb. She has been to visit me several times and I think the world of her. 
    I also set up a sewing group on Facebook (on a whim) but it grew and grew and now has 3000 members.  This has been great for my confidence that I could actually do that AND maintain it. Well some days I can't but I have friends who help. 
    Yeah I'm really proud of that. 
    If I lose the pip I won't be able to afford Internet access anymore. It will be back to extreme poverty and isolation.  But I do have a best friend now who will always be my friend. So at least I have more than last time.   
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    Delete Facebook hell yes! I did!  The only thing it’s good for is predators and paranoia. The more vulnerable you are the worse it can be using Facebook. There are so many fake people who are out to cause harm,and it’s not regulated properly. So when you report issues nothing is done. I tell my family and friends I will not be on there and neither should they be. Putting all your info onto Facebook who do goodness knows what with it? No thanks! 
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • AilsaSAilsaS Member Posts: 5 Connected
    I totally agree, I use Facebook every day. If Facebook didn't exist, I don't know what I'd do because I use it for social reasons, and it is the main platform I share my blog posts on. If I didn't have Facebook, I am fairly certain that I would lose most of my friends. Alright, I have lost friends due to disputes over Facebook, but in the main, Facebook is a very useful tool for me.
    Ailsa
  • laurahc__laurahc__ Member Posts: 35 Courageous
    Sam_Scope said:
    Dr Frances Ryan wrote for the Guardian about how this campaign doesn't appreciate disabled people and how social media can be a lifeline.


    I don't necessarily agree with this. Good friends are a lifeline, people who actually care and don't ditch you when the going gets tough are a lifeline. They are the people who make the effort to see me in person, not the people who "like" a photo or whatever. My good friends are the people who don't mind if I look like a zombie, unable to form a coherent sentence thanks to brain fog and am still wearing pyjamas...in fact, more often than not, they are the people who buy me new pyjamas! 
    confessionsofazebra.blog 
  • [Deleted User][Deleted User] Posts: 1,756 Listener
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  • CockneyRebelCockneyRebel Community champion Posts: 5,259 Disability Gamechanger
    I am not a Face book user but I do think that in some cases it can be very useful,
    BUT only if sensible precautions are taken.

    Nowadays you would not leave your front door open, so apply the same precautions if you use any social media, don't leave your virtual front door open

    CR
    Be all you can be, make  every day count. Namaste
  • Government_needs_reformGovernment_needs_reform Member Posts: 850 Pioneering
    edited April 2018
    Personally I hate Facebook I'm all for getting rid, most people just talk drival on  it? Like iam now I prefer to use WhatsApp.

    Many are reading my post and thinking now what a fool but really I don't care anymore in regards to this whole internet or this country it's all crap!!!

    ⬇️
    I created one of the campaign election video for Labour, and Jeremy Corbyn,
    This is a new version of Emeli Sande, Hope "You Are Not Alone
    I highlighted everything that's wrong with this country from benefits, NHS etc, but now we have to put up with the hate now. 

    You can see the video here.
    https://m.youtube.com/watch?v=P5o8hRHh9IY


  • [Deleted User][Deleted User] Posts: 1,756 Listener
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  • nanof6nanof6 Member Posts: 200 Pioneering
    i love fb i play poker and chat with people from all over the world, i dont put persnal things or pictures on, i just collect my free chips and play poker,  and scrabble bingo slots candy crush its all free,great on a wet day when i cant get out, love it dont no how i would spend my days in winter cant knit sew paint because of my hands etc  im in a wheelchair  no i like fb 
  • whistleswhistles Member Posts: 1,603 Disability Gamechanger
    Don't use or like Facebook.
    My real friends should be in touch with me and me them anyway, not just putting up a post to share to the world.
    You can connect with me in lots of ways, I haven't lost friends with not using it. My life isnt suddenly missing out, in fact I am hearing about people addicted to it and I definately dont feel I miss out.

    I would rather post here to be fair. 

    As for games you can download via the Google play you don't need to be logged in to Facebook. It doesn't need to control you. 

    I think the most sad thing is if you are lonely a virtual person on a screen shouldn't be what we reach for. Are we not in touch with friends/ family and the community anymore. Don't real friends pop by?
    Do not follow me, I don't know where I am going.
  • WaylayWaylay Member Posts: 888 Pioneering
    I often can't leave bed, or my room, or my house, for days or weeks at a time. I have a couple of friends who come to visit when I can deal with people (or if they think I'm not eating), but I live at the other end of town from most of my friends, and few of them have cars. Also, my friends are busy! They have jobs, hobbies, kids, etc., so a lot of them can't just "pop by". They might be able to come to visit once a month, but then I'd only really talk to them 12 times a year. I also have to cancel visits about half the time, because my mental health goes wonky, because I suddenly have a back spasm and need to take a lot of painkillers, and/or because I'm suddenly exhausted and have to go to sleep. I'm not the easiest person to visit. Oh, and I hate using phones - they make me incredibly anxious. Often when my depression/anxiety are bad, I'm incapable of phoning, texting, emailing....

    My family are in Canada (I spent much of my childhood there), and many of my friends are in the US (I lived there for a while), so we see each other *very* rarely. The last time I had the money and spoons to make it over there was 4.5 years ago. I use facebook to stay in touch with them, since they're almost all on it. Yes, I could email them all.... Who am I joking - no I can't.

    Yes, I find FB depressing on a regular basis (look at my friend hiking across California! Doh! or OMG TRUMP), but then I just don't login for a while.

  • whistleswhistles Member Posts: 1,603 Disability Gamechanger
    The Internet itself I find very useful, especially not being able to get places etc.
    But I don't like the fact that everyone assumes you are on it and you miss out if you don't.
    I would rather be here as I said before than linked to there I'm afraid. 
    Here comments are regulated and you are warned, fb just appears to be an free for all. 
    I like to keep my private life as private as possible, just me though. 
    Do not follow me, I don't know where I am going.
  • feirfeir Member Posts: 388 Pioneering
    I used fb for several support groups. as well as keeping in touch with family.They suspended my account a while ago and i was gutted to lose both those things.

    That's it though. I made a new account yesterday to do both the things above and after using other social medias instead of facebook i've noticed just how rubbish fb is and how badly designed. It's laggy, full of spammy ads (even if you use adblocker you'll see a fair few of them), if you download the messenger all your phone contacts can find you as a default, they want way too much personal info than is necessary for you to find your friends and family on there, i've noticed they have given a little more privacy back though by changing your url to a number instead of your name so that's good but i'm still using the greek alphabet for my name to retain more privacy because you never know when they will make things less secure again. And like all popular sites it attracts scammers and fakes and sex pests.

    Fb isn't neccessary for a lot of things, just because everyone else is using it is why it's deemed essential. And if one guy could create that rubbish and make it popular i don't see why other, better, sites can't do the same?

    There's not really any socialisation on facebook apart from in groups either i found. The site doesn't delete racist stuff, they leave up sexist stuff also. it's not the be all and end of the internet at all. I will continue using my other social medias now as i've done a lot more socialising on them than on facebook.
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello every body just never really use Facebook. Why you wish to use something that in my opinion is not monitored.  Also open to scrutiny from others who may wish to mentally cause you harm.

    My concerns were justified as I put an application to sign up. Once signed up. My facebook page swamped with advertisements and people wishing to be your friend.

    My anxieties grew each day using it, realising quite quickly that people could post anything they wish to.

    Find me and identify me who I am really. Been and lost contact with family. Who I do not wish to be with.

    Harmful and other comments are in my opinion are to my well being.

    Plus found SCOPE this was for me.  Also feel safe here. Happy with community of people who I can identify with.

    Made friends here.  Also can be honest and frank and open with any salacious, snide comments.

    Use this for advice and information.  Support for helping me through the day.

    Then I am not lonely.
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello sorry about this typo I meant to say with out any snide or salacious comments . Apologise not reading what I have said.
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • [Deleted User][Deleted User] Posts: 1,756 Listener
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  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Victoriad Got that sausage fingers.  Must be contagious my friend .  Yes not like that of course not. Wear a supersuit all the time. Saving people of this forum all the time. lol.

    Especially you ladies always to the rescue where the theme music??
    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • [Deleted User][Deleted User] Posts: 1,756 Listener
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  • WaylayWaylay Member Posts: 888 Pioneering
    I wish I didn't need to use FB .I often go months without logging in. But if I want to keep in touch with/ friends/family in other countries, it's pretty much the only way.
  • the_velvet_girlthe_velvet_girl Member Posts: 103 Courageous
    I have a love/hate relationship with Facebook. I like the fact that I can keep up to date with my friends that live all over the UK & don't have the money or health to visit regularly.
    I have found out through Facebook that some of my friends that live near me have had a few nights out & I haven't been invited as my friends thought I would be to sick to attend. I sometimes feel down when I see my friends out doing fun activities & I'm too poorly to go out.
    I've decided to keep Facebook but limit my time on it to once a week for 30min. This is keeps me up to date with people & local news without Facebook taking over my life.
  • [Deleted User][Deleted User] Posts: 1,756 Listener
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  • mossycowmossycow Community champion Posts: 486 Pioneering
    Nothing beats face to face.... Maybe... But unfortunately my face is attached to my body which often finds it hard or impossible to get to another person with a face.

    Respectfully  I think the point is that if you are able to get 12 miles away to the library and pop out to the shops then sure that's great... But the point of the article is those who are unable to leave their house. 

    I had 3 years where when my husband and daughter left for work and school at 8am I was on my own, unable to leave the house till they returned in the evening. 

    I have a powered wheelchair now so this is less often though I recently had a period of 5 weeks where I was ill and saw noone apart from husband and daughter in the evenings. Even the doctor was on the phone. 

    Yet I had an active social life  chatting and enjoying my friends and family. Had lovely catch ups with my cousin and his new baby, photos, remembering my Grandad who has passed away.... They live in Australia. My school and  university friends live far and wide... And my local friends are working and have family to care for. I don't post content for people to simply 'like' ... It's an exchange of views, memories  making new memories... Exchanging pictures, videos, links to cool stuff... All while I am in bed often being distracted from pain and taking me away from depression dn loneliness. 

    I'm also in many groups so I learn about all sorts of topics ranging from music (I'm a music teacher), education, aquariums, gardening, cooking, travel, animals, science, sci-fi, local issues, politics, etc.... I am unable to now work in a school, that I loved, but I contribute to lesson plans and  resources while also gathering ideas for the few pupils I have left. I can ask for meal ideas I'll use in the evening.... And travel/hobby ideas I'll use when I'm more able. 

    Ive had sad times where I've popped a message on Facebook and had so much support, from friends I know well but could never ever get to their shoukder to cry on. And I've also been there for friends... Fo example I'm quite awesome at helping people with breastfeeding problems... And often my new mum friends are also unable to leave the house for support. 

    I've met people for example our lovely friends a and a who we bought a fish talk from off Facebook. We met in real life about 6 years ago and have become firm friends. He is very disabled too and I've learnt so much from him about fish keeping, he was in local government and is such a cool chap.... But he is bed bound and I can't get up the steps to his house. 


    If people are choosing to spend time on Facebook instead of seeing real people, this isn't Facebook's doing, it's people making a choice.

    But I will never delete a tool that richens my life and transports the love to and from me and my friends. 

    I use WhatsApp to keep in touch with my family in between visits. My daughter sends her school pictures, her daily news,... Random comedy selfies... To her Grannie and Grandad who live hours away. We see them, but would not be without the quality contact with have with them in between. 

    I've just started using twitter and love it! I've debated and discussed alsorts with so many people. Lm.. Learnt so much and it enables me to catch up on the world which previously used to fly round the sun without me. 


    Also, Facebook is monitored, by me. Its very easy to only post to friends, real friends and easy to not get unwanted content. It's a tool.... Like an axe can be used to make a house or star in a horror film Facebook can be used well or badly. 

    Deleting is not the only way to improve use of social media. 


    "I'm trying to live like a random poem I read that ended 'to bloom where we are planted"

  • TopkittenTopkitten Member Posts: 1,258 Pioneering
    Social networking is what it is. "Friends" are not necessarily real friends, it's just a status that you can apply to people. With any networking of this kind it is important to apply appropriate security restraints and not put anything on there that shouldn't be there because it can be dangerous. The advert on TV showing how people can steal your identity from pictures is quite right. Just be careful.

    Personally I find FB very superficial and don't like it much but it still has a purpose for me but I don't go beyond that. If people look me up they won't see much unless I "friend" them. After that what they see is whatever I let them see. However, it isn't worth putting anything serious on there because almost all people don't want to even acknowledge it. I did try Twitter but found it useless for me so stopped. I don't use anything else much except a social networking site for the over 50's.

    I don't class Scope as SN because it's more of a BB (Bulletin Board), not quite the same thing imo.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • YadnadYadnad Member - under moderation Posts: 2,862 Disability Gamechanger
    I wouldn't know how to use it.
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