Idea for Fundraising: Make People Listen to Tinnitus

[GregCA]

I know this is a bit from left field, but look at all the sex scandal cases in recent times. People generally don't speak out until one or two very brave souls open the door, and then inevitably, the floodgates open when everyone else starts to believe a change (and justice) can happen.

Do you think a #meTinnitusToo or equivalent would take off?

 

[advocate21]

Do you think a #meTinnitusToo or equivalent would take off?

No. Or would you share that you have tinnitus, with your real name? People, including celebrities, don't want to be associated with tinnitus.

And copying an existing successful viral campaign doesn't work. Copycats of Ice Bucket challenge didn't take off. There were hundreds of attempts by other charities, but none took off.

 

[GregCA]

No. Or would you share that you have tinnitus, with your real name? People, including celebrities, don't want to be associated with tinnitus.

That sounds like a quick generalization, especially with data we do not (and cannot) have. Quite a few celebrities did speak out about their Tinnitus. What's impossible to know is how many do have Tinnitus and haven't disclosed it (that's why I say we cannot have this data, by definition).

If you think of the "metoo" movement, there was also a psychological hurdle to come out stating you had been a victim of abuse - it's also something to overcome in terms of courage, and many did (including celebrities).

I do agree with you that it will also take some form of courage to disclose publicly one's struggle with Tinnitus (I say that as having my own struggle with public disclosure myself, so my testimony isn't hypothetical), but what some of these movements have shown - and I think that was one of @Ed209 's point - it takes a few "starters" to get the snowball going and break the barriers of courage: we think it can't happen until we see peers doing it, and that lowers the barriers we once thought were an impossible hurdle.

I do think, however, that a T-related hashtag movement would not garner as much sympathy as the "metoo" movement: in many people's heads, one gets T as a result of their own negligence ("they must have gone to concerts and listened to music very loud for all their lives - how irresponsible!"), while the #metoo folks were clearly victims of situations unrelated to their negligence (although I'm sure some could find ways to argue that point). This, I believe, is a bigger problem for the success of a T campaign.

 

[Ed209]

No. Or would you share that you have tinnitus, with your real name? People, including celebrities, don't want to be associated with tinnitus.

I have, but I'm aware that we're all different. I have plastered this is all over my Facebook and practically every person I know knows I have bad tinnitus.

it takes a few "starters" to get the snowball going and break the barriers of courage: we think it can't happen until we see peers doing it, and that lowers the barriers we once thought were an impossible hurdle.

Absolutely. There is a lot of psychology at play in any movement. However, Tinnitus is so far off the radar that it would take something monumentous to create the kind of awareness the ice bucket challenge did, for example.

I do think, however, that a T-related hashtag movement would not garner as much sympathy as the "metoo" movement: in many people's heads, one gets T as a result of their own negligence ("they must have gone to concerts and listened to music very loud for all their lives - how irresponsible!"), while the #metoo folks were clearly victims of situations unrelated to their negligence (although I'm sure some could find ways to argue that point). This, I believe, is a bigger problem for the success of a T campaign.

This is true. Sympathy is a very powerful emotion. However, I feel we need to convince the world that a lot of us are victims of uncontrolled noise. Where's the education and/or legislation to mitigate and control the risk for people? I'm not saying to ban concerts or anything like that; let's face it, for half my life I've either been performing music or watching it. There just seems to be no in-between, though, and an extraordinary lack of awareness at school level. We teach our kids about the dangers of pretty much everything but hazardous levels of noise.

 

[GregCA]

This is true. Sympathy is a very powerful emotion. However, I feel we need to convince the world that a lot of us are victims of uncontrolled noise.

...and diseases, and military service (victims were serving their countries), and domestic violence (slaps, concussions), and vehicle accidents, and medical treatments (cancer, ototoxic meds), and victims of auditory accidents (sound blast into headphones from a "bug"), and genetic predispositions... I'm sure I'm forgetting a few!

 

[Ed209]

...and diseases, and military service (victims were serving their countries), and domestic violence (slaps, concussions), and vehicle accidents, and medical treatments (cancer, ototoxic meds), and victims of auditory accidents (sound blast into headphones from a "bug"), and genetic predispositions... I'm sure I'm forgetting a few!

Yea, that too!

 

[glynis]

@David, @Ed209, @Steve @Markku

How about short 1 minute YouTube videos of our own struggle with tinnitus and get them out on Twitter and Facebook etc, you donate 5-10 pounds for Tinnitus Talk or Tinnitus Hub or British Tinnitus Association to show it and money goes to research?

Getting it off your chest tinnitus videos.

love glynis