Social. It might seem that the relationship between social media and disability is implicit in the term, because often when we speak of social meaning socially useful. Among the many meanings of the word, both as an adjective as a noun, there are
•adjective relating to human society and its organization, or the quality of people’s lives (Longman Dictionary of Contemporary English)
•noun If you have a social conscience, you worry about people who are poor, ill, old, etc. and try to help them.(Cambridge dictionary Online)
However, social media have nothing to do with the humanitarian and solidarity with which you identify the social contexts such as social worker, social work, social service,….
Social media are media for social interaction, using highly accessible and scalable communication techniques. Social media is the use of web-based and mobile technologies to turn communication into interactive dialogue.
For those who know them will be easy to understand how in all these cases is the user the createor of the contents: text, video, audio, that can be immediately shared. It is possible to create personal relationships with others who share the same interests or that you know outside the network, like friends, relatives and colleagues in real life.
But let’s get to the point.
With a survey on SuperAbile.it (in Italian), the question is asked to the internet users: How does social networking affect the life of a disabled person?
The majority seems to agree that allow you to get in touch with people and situations otherwise inaccessible, but a good percentage believes that we must be aware of the difference between real and virtual.
As we can not ignore the fact that some consider social media fiction that apparently level differences and hides the loneliness, I think the answer is always in the middle.
I am convinced that nothing can substitute human contact and the sharing of real experiences, but the importance of social media is not inompetition or comparison. These are tools, means to access information and get in touch with other people and groups by selecting the channels according to your interests,
While before the research of information forced a general roundup of the whole network now it is easier to find what they need and often you do not even need to look because once you are a follower of a favorite channel, you are constantly updated on what you choose.
In this sense, the questionsof the survey are somehow misleading because they do not really relate to social media, but internet in general.
Internet use has changed dramatically over the past two or three years, with the web 2.0, so the question of how social media has changed the life of a disabled person find an anwer with individual experiences, modeled on the use that each user makes the various social tools.
Facebook, I subscribed to various groups on retinitis pigmentosa, some active and interesting, others less, but now I know without even looking for that in these groups or pages there is a deposit of all the news from the world related to medicine, research, literature connected to eye disease. In addition, users are free to write their experiences, ask questions, get answers immediately.
When I was operated for cataract I had to trust the advice of doctors. Last week a guy asked if the surgery is always advisable, and he obtained differentd personal experiences, to compare with.
The amber-colored glasses are effective? Again the question I have asked myself many times has had dozens of responses that meet the conflicting opinions of different doctors around the world.
Not to mention the psychological attitude and daily frustrations. As I sometimes find strange to read some personal details, I am convinced that the freedom that today a person with retinitis pigmentosa has to tell his stories to strangers while receiving human responses, is a value.
In my case this is not an illusion. I am aware of my life and reality but I have no friends with my problems who can understand me as a perfect stranger from Canada, that faces a similar situation.
Youtube. I have seen, heard numerous stories of courage, determination and strength from which I undoubtedly benefit. Again it is worth the amount of diverse audiovisual material available that is not comparable to conferences or meetings in the subject. Again, I recognize the importance of attending meetings, because the exchange of information based on personal contact is different and stronger, but Youtube is free. I do not have to go to London or across the ocean to hear stories of other people with Usher Syndrome. In 15 years of living with the disease I haven’t met another Usher person besuide my brother.
If you upload your own video you might get positive or negative comments, or anyway, an opinion on what you do and say and this helps to improve and continue.
Deaf people can share ASL videos and ‘talk’ to the world.
In this sense I see no detachment from reality and I do not believe soothing words have less value if they comes from a stranger, because I think people keep their human characteristics even if represented only by a name and a small photo. Disabled people I’ve met online have always proven to be true. The anonymous use of the network is on other occasions, while in the case of disability becomes a way to feel more free.
And you? What are your experiences? How do you use Facebook? And Twitter?
Also Noisyvision has its social channels and we intend to expand the use and contents, to find out how the limits of Usher Syndrome can be overcome thanks to the internet, the potential of immediate contact with people and their interaction.
SOCIAL NETWORK FOR THE DISABLED
• Emerging Technologies: Social Media and People with Disabilities
• Disability LifeStyles: Getting the most from your social networks and support groups
• Social networking: Not as inclusive as you might think