Social media is a great enabler of friendships, particularly for people who for whatever reason cannot interact with other people in person. Where social media falls down is that it can lack feedback. When talking in the physical world humans acknowledge each other in various subtle ways. Sometimes it may not be a complex reply but may just be a look or a nod, a facial expression, or perhaps an audible acknowledgement like “mmmm”, “uh huh” or “oh” or some other noise.
The trouble is we mostly don’t do that when it comes to tweets and comments.
Social media can be used in lots of different ways but what many people post is a mix of news and links alongside personal updates of situations and feelings. People who are reading will see both and will often share what interests them or comment on it. When it comes to more personal updates though, they won’t necessarily reply but they would miss those things if they were not there. The personal updates shape our perception of a person and can increase feelings of connection to that person. Very often though, there is no suitable way to reply. There’s nothing that can easily be said, or we don’t feel the need for a full sentence in reply but have no way to nod our acknowledgement. We read and absorb but say nothing in return.
This leads to a big problem: we can feel ignored because people only interact when we post something funny / awful / outrageous and they seem to skip over the personal stuff. Friendships through social media are real and meaningful, frequently more so than acquaintances in the physical world, and yet they lack a huge chunk of feedback that makes us feel validated as a person.
The “Like” or “Favourite” button has become a proxy for acknowledgement in some cases but that doesn’t work when the situation is negative. A button for “I’ve seen this” or “Dislike” might help but even that wouldn’t solve the problem because social media is more broadcast than one-to-one conversation. It’s like saying something aloud to no-one in particular in a room with hundreds of people in. There’s no telling how many people would see an update and how many of those can stop to acknowledge each one. It would be impossible for someone following more than a few hundred people on Twitter, for example.
There doesn’t seem to be an easy solution to this problem but it is something that we need to work out as more and more of our lives take place through the abstraction of screen and keyboard.
“Perhaps. Not yet but in the future. When I’m ready to face the complex issue of looking like a fake when I get up and walk.”
This was an answer given when I suggested to someone with chronic illness that a mobility scooter would help overcome some of the problems with walking. It’s a sad indication of the judgement by society that affects so many people who could benefit from mobility aids.
Unfortunately what other people think of us is something that keeps many people from accepting that they need help. I myself delayed using a wheelchair for a year or more after I really needed one because I was scared of looking different, scared of being accused of using it only to get sympathy or benefits. In delaying my use of it I no doubt subjected myself more pain and more time stuck in bed recovering than I would otherwise have endured, and prevented myself from doing as much as I might have done.
The problem of being thought of as a fake when standing up from a scooter or wheelchair is a particularly pervasive one. The common assumption amongst the general public is that people are “wheelchair bound” or “confined” to a wheelchair because they cannot walk. Full stop. Of course there are people who cannot walk at all but it is usually not the case. Much of the fuss around the introduction of PIP to replace DLA is that the maximum distance you can walk before help is withdrawn has been reduced from 50 metres to just 20. For those that haven’t thought that through, it should be obvious that you could therefore see someone walk 20 metres or even 50 metres who still gets help to move around. If that seems unfair, think about how you would get through your day if you could only walk 50 metres in one go. For those who are chronically sick they often could walk if they had to but are rewarded with pain, exhaustion and eventual collapse. Because of the stigma around mobility aids they often put up with this until such a time as trying to keep walking ends up confining them to bed in perpetual recovery. In fact, when they finally give in and accept their need for help, far from being “confined” to a wheelchair they are actually freed up by it to go further and to do more. As a result of not wasting energy on trying to walk most of the time they have more energy to stay out and interact with people.
My use of a wheelchair actually means that when I do need to walk I can do so relatively easily as long as I don’t overdo it. The problem is that to an ignorant observer it looks like I was faking my need for help in the first place when instead I can only get up at all because I was using the wheelchair. (Although one of my symptoms is that after prolonged sitting my muscles feel like they seize up and I end up quite wobbly when I try to stand, at least for a few minutes.)
The same judgement affects people who have a Blue Badge entitling them to use a disabled parking space. (I hate that name. Mobility parking space maybe?) The use of a car and a parking space near to their destination may well mean that they can walk the short distance from car to destination without apparent signs of struggling and so passers-by jump on them and accuse them of faking it. If they did not have the car and the parking space they would probably have visibly struggled to walk the greater distances between public transport options and their destination.
If you have read this far then you are probably already convinced but the message I would like people to take away is that you don’t see everything about a sick or disabled person. You don’t see the pain and the recovery time after they have done something without apparent struggle and you don’t see what they would be like if they did not have the use of mobility aids or help from others. Don’t judge, not least because one day it may well happen to you, and if you see someone else judging, set them straight.
Related blog posts:
Embarrassed to be me
Fear and mobility
Blue Badge Blues
Why I am suing the government