Samantha Baines — New British Tinnitus Association (BTA) Ambassador

Discussion in 'Awareness & Fundraising' started by Allan1967, Jan 31, 2019.

    1. Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      The BTA have announced the comedian Samantha Baines to be their new ambassador.

      Not a smart move if you ask me, @David. I saw her on Sky News a few weeks ago cracking jokes about tinnitus, which is the last thing we need.

      I've left a message on her Facebook page asking that she doesn't merge her roles due to the impact this has on our lives and it's basically not a laughing matter.
       
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    2. annV
      Fine

      annV Member

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      unknown - possibly hereditary
      That's the worst ambassador you could get for tinnitus. In the announcement she's already cracking jokes:

      She laughs: "I always wanted to be in the Ferrero Rocher adverts with the tower of chocolate. Now I'm the British Tinnitus Association ambassador and I will be spoiling you ... but with personal tinnitus anecdotes rather than chocolate. Soz."

      What did you think, BTA, where is your sense? @David? Is tinnitus a laughing matter?
       
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    3. David

      David Member Benefactor BTA

      Location:
      Sheffield, UK
      Sam speaks and writes very eloquently about her tinnitus experience - Sam was part of our conference networking event last year and spoke about her personal challenges of living with tinnitus. Based on that we thought Sam would be a strong voice.

      There's a lot of discussion on this board about wanting celebrities to talk about living with tinnitus and their personal experiences of it, Sam is willing to do this and does. Surely we should encourage Sam to do this and anyone else that is willing?

      Sam discusses tinnitus in her own way, openly discussing when tinnitus is impacting on her, as well as asking others to share their experience - look at her twitter feed @samanthabaines 5 or so tweets about tinnitus in the last 2 weeks, none of them belittling tinnitus or anyone's experience of it.

      Maybe we should celebrate and support celebrities to discuss tinnitus (and in their own unique and original ways) rather than discouraging it.
       
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    4. Contrast

      Contrast Member Benefactor Hall of Fame

      Location:
      Retrovile
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      acoustical trauma
      No mention of research, neuromodulation, hearing loss restoration, lidocaine, anything that would help tinnitus and hearing loss?

      She's living a full life despite having tinnitus and hearing aids.

      A fan of mindfulness meditation.

      10 years from now is this what we want to be talking about instead of treatments?
       
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    5. JohnAdams
      Studious

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      Maybe they think the BTA is a joke?

      If we all collectively denounce these organizations, when people hit this website and see that it would greatly undermine their status as legitimate groups.

      I for one completely denounce both the ATA and the BTA. I do not feel that either one of them are doing anything truly productive to improve our situation.
       
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    6. Watasha
      No Mood

      Watasha Member Benefactor

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Unknown
      @David Thank you for all of your hard work, you do more than most.

      I also thank Samantha and anyone who takes the time to raise awareness for this condition and would also add that this is is no way an opinion on Samantha. I have not seen her interview though her twitter feed seems reasonable enough to me.

      Just my two cents on the matter:

      The concern that many on this board have is this: If someone with any notoriety or a prominent platform in any way gives off the impression that tinnitus can be no big deal, that you learn to live with it, most will habituate, it's an annoyance, etc, it throws those in the 5-15% who suffer completely under the bus, despite the fact that everything they said is true.

      With so little public messaging already and even less in funding research for cures, getting off message can dramatically impair peoples' perceptions of this condition and will fail to motivate them to donate. This has happened over here in the States.

      I would just ask that we all maintain a laser-like focus on helping those who are truly suffering by focusing on the humanity of those who have not overcome the condition. They are the ones who need a voice. Unfortunately, anything off this message isn't really going to drive the change needed for a viable treatment.
       
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    7. Watasha
      No Mood

      Watasha Member Benefactor

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Unknown
      @JohnAdams Have you pushed either of them for reform?
       
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    8. JohnAdams
      Studious

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      Yes. I have directly messaged David before asking why they refuse to talk about regenerative medicine and I have been ignored.
       
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    9. annV
      Fine

      annV Member

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      unknown - possibly hereditary
      I fail to understand what good talking about regenerative medicine would achieve. Those treatments are a long ways off. Why would you provide potentially false hope? Only science geeks like yourself are interested in that. What I do not understand is why every hearing related organization downplays the impact of tinnitus. Why is it so difficult to go on TV and say tinnitus destructs people?
       
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    10. JohnAdams
      Studious

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      We know Ann, we know......
       
    11. Watasha
      No Mood

      Watasha Member Benefactor

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Unknown
      More of this.
       
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    12. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      Totally agree @David that we should be pleased, all I'm saying is I hope she keeps the comedy for the stand up.

      The last thing the tinnitus community needs is someone with tinnitus making wise cracks about tinnitus because that will NOT inspire anyone to give their money to either the BTA or any researcher.

      You do NOT see laughing starving children on TV ads. You do NOT see howling cancer patients asking for donations. No... you see their suffering first... then they appeal for money and then the advert MIGHT finish on a warmer note.

      Do you get the psychology of what I'm saying here? A joker making jokes is going to make it a joke.

      Please don't let that happen.

      I appreciate you want people new to tinnitus to realize you can get through it, but take a look around you @David... there's posts everywhere of people suffering depression, anxiety, suicidal ideation, suicide itself, most hooked on benzos, sleeping tablets, antidepressants... so this isn't a laughing matter. This is serious and I'm sure the tinnitus community wants someone who will put that message out there and demand, on our behalf, that more is done to find us a cure or at the very least something that reduces the tinnitus to a more manageable level.
       
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    13. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      The BTA are at the mercy of their sponsors (that's basically what the BTA's Facebook account author said) but the BTA also told me on Facebook that many of their sponsors are investing heavily in research towards a cure.

      I asked what research was that then, and they never responded.
       
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    14. Starthrower

      Starthrower Member Benefactor Ambassador

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      Here in the USA I don't have any idea who Sam is! But she is now gaining more exposure because of this.

      Hopefully her comedic act will raise some awareness for the tinnitus community.
      I don't think humor should disqualify her from being a spokesperson for the BTA.

      The problem... William Shatner is pretty much a joke of sorts within the tinnitus community regarding the aspect of tinnitus. Yet, he remains an honorary chair person on the ATA board of directors. I would think such a "title" would require the person to speak out and make more public awareness appearances.

      And yet... people in the past who have donated to the ATA are quickly forgotten and written off. These are the people who should be honorary people.
       
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    15. JohnAdams
      Studious

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      Cool, now we just need Jim Carrey to be the spokesperson of the American Cancer Society.

      I just looked at some of her so-called comedy. She sucks.

      Good work BTA!!! :rockingbanana:
       
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    16. david c

      david c Member

      Tinnitus Since:
      01/2012
      Oh dear, more trivialising of the impact of tinnitus by the BTA. Sadly I am not surprised. Other charities (for example those for Cancer, MS, Parkinson's, ME) seem to manage to raise awareness of their health conditions without making jokes about them, but there we are.
       
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    17. Starthrower

      Starthrower Member Benefactor Ambassador

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      I greatly appreciate the BTA and @David! They took on the Danny Boy student grant program started here by @Ed209.

      And @David actually comes here to Tinnitus Talk and gives his time. Not to forget the video interview with @Steve.

      I would never think that the BTA is trivializing the impact of tinnitus.
       
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    18. Fabrikat

      Fabrikat Member

      Tinnitus Since:
      1973
      Cause of Tinnitus:
      Otosclerosis then volume then viral infection
      It's a bit unfair comparing those diseases and their respective charities to the tinnitus fraternity.

      Just as people will arrive at Tinnitus Talk highly distressed and even suicidal, 85% will hang around for a bit, then drop away. That's because they've accommodated it, habituated and moved on. So we're really left with the 15% that don't. Us!

      Those diseases you've mentioned rip through most people's lives, with in some shape or form, a much higher destructive force in almost all they touch. Death, incapacity, financial destitution, family breakdown etc. In western societies, cancer will touch one in three. Tinnitus doesn't have the same strike rate and will never have the same profile as those diseases or the same level of charitable support. Even charities for the deaf don't have the same high profile level. And they've been around forever. Which is not to say we shouldnt strive for more.

      If I was to choose someone to represent the 15% of desperate tinnitus sufferers, they'd look dishevelled, have dark sunken eyes, shake and weep uncontrollably and be under constant suicide watch. But who'd want that on their TV program?

      Ms. Baines is a more acceptable face who I'm sure can be briefed to highlight the plight of the 15%, the suicides and all the miseries, as well as raise awareness of fundraising for real cures. Even cancer and MS are often represented by comedians with those conditions who make jokes at their own expense. I'll bet when ALS sufferers first saw someone tipping a bucket of ice on their heads, they would have thought, really, that's all my suffering is worth? But look at it now? Billy Connelly can make light of his Parkinson's diagnosis without detracting from the horrible ravages of the condition. He can no longer play his beloved banjo.

      Personally, I wish the BTA had found a comedian with tinnitus that was more famous. Like a Steve Martin say. He could not help but draw eyeballs. But that's a tall order. I'm just glad there's someone appearing on mainstream media talking about it. I want her to talk a lot more!
       
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    19. Watasha
      No Mood

      Watasha Member Benefactor

      Tinnitus Since:
      03/2018
      Cause of Tinnitus:
      Unknown
      @Fabrikat I just think this is what gets us into trouble and why we see such passionate responses here. If someone is talking about it and doesn't say the right things, it does more harm than good.

      It's clear from the comments on this thread that people want spokespeople to speak up for the 15%, not just those in the 85%, so hopefully they can be coached a little on messaging. Granted, I don't know much about her background and level of suffering so I don't want to put the cart before the horse that wouldn't be fair, but the message seems clear that those in the 15% feel that they have been repeatedly forgotten.
       
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    20. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      Good balanced post and I for one won't mind a little humour (now) as long as the message that this ruins lives, takes people's lives etc isn't lost amongst jokes about it.

      And above all Ms Baines campaigns towards a cure.
       
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    21. david c

      david c Member

      Tinnitus Since:
      01/2012
      It does seem ironic that an American member of Tinnitus Talk can frequently criticise the American Tinnitus Association - as they are fully entitled to do. Yet when British members of Tinnitus Talk criticise the British Tinnitus Association the attitude from that person appears to be "how dare you!"

      I don't doubt that the employees of the BTA have the best intentions - yet I think we are entitled to criticise some aspects of the BTA - whether it is poor decisions in research funding, dubious claims on their website or poor choice of "Ambassador".

      I am afraid that I just don't agree that if tinnitus charities focus on the severe impact of tinnitus it will put people off. Rather the reverse: I think the degree to which tinnitus charities such as the BTA frequently downplay the impact of tinnitus means that many people think "it's not that big a deal and doesn't need my support".

      The I newspaper in the UK recently ran a series of articles about MS which effectively raised awareness of that condition. Not once did they feel the need to downplay the impact of the condition, let alone make jokes about it.
       
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    22. Starthrower

      Starthrower Member Benefactor Ambassador

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      Oh sorry @david c my tone wasn't directed that way in my head or typing fingers. I was thinking in more positive terms from what I read here about the BTA and @David because I see how he responds to questions here on Tinnitus Talk and more specifically to your past questions.

      The ATA never does this.
       
    23. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      Samantha Baines, new BTA Ambassador, responded to a post I made on her Facebook page sometime ago.

      Way I read it, she plans to make it funny.

      baines.PNG
       
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    24. AUTHOR
      AUTHOR
      Allan1967

      Allan1967 Member Benefactor

      Tinnitus Since:
      1997
      Cause of Tinnitus:
      Ear infection
      You need to get your new ambassador on a leash @David.

      She's prepared to make jokes about the suffering of others... where on earth did you get her from @David?

      baines 2.PNG
       
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    25. JohnAdams
      Studious

      JohnAdams Member Benefactor Hall of Fame

      Location:
      here
      Tinnitus Since:
      it started.
      Cause of Tinnitus:
      hearing loss
      You just got accused of mansplaining!!!!!! LMAO!

      Her comedy sucks anyway.
       
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    26. Markku
      Inspired

      Markku Founder Staff Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      I can by the way share that a couple of weeks ago we asked Samantha Baines to take part in our podcast, so she could help shed light on any possible misconceptions or misinterpretations, how she sees her role as BTA ambassador and what her goals are with regards to representing the tinnitus community.

      The idea wasn't to attack her or place any premeditated blame on her, but to be civil and objective, informative, and to learn more about her.

      Her PR assistant did come back to us, seemingly interested, asking for a schedule to do the interview - the assistant then said that she's waiting to hear back from Samantha.

      In the meanwhile we responded but, unfortunately, that dialogue ended there and then; we never heard back from the PR assistant again (let alone from Samantha).

      It's a shame. I feel @Jack Straw would have been able to do a great job interviewing her for the podcast.
       
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    27. Jack Straw
      Balanced

      Jack Straw Member Benefactor Ambassador Hall of Fame

      Location:
      US
      Tinnitus Since:
      1990s
      Cause of Tinnitus:
      Infection, Acoustic Trauma
      I hope she realizes the damage that can be done when joking about a serious illness. Since she herself has tinnitus, people will question its seriousness/suffering if she jokes about it openly. This is further problematic because she is our ambassador and is representing all of us. I'm not sure why she said @Allan1967 was "mansplaining" when he pointed this out.

      It is like if someone is suffering from serious debilitating depression and at the same time they make jokes about it. People will not take them or the illness as seriously because when you can joke about something, people think it can't be that bad.

      It would have been nice to have her discuss her thinking regarding her type of awareness on the podcast, but we haven't heard back. I am hoping she will have a conversation with us to help clear this all up.
       
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    28. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Well, interesting that she doesn't say research for a cure is important but she sees her role as about raising awareness. How can you have one without the other?

      An interview would have been nice to get at questions like this.
       
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    29. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Also, mansplaining is a new one on me. I'm 65 years old and was educated and worked in a profession that was entirely male dominated.

      I see her reaction as one who lives in "me" land and does not want to take suggestions on board for consideration. Oh and by the way, there are many males like that as well.

      So, Allan looks like womansplaining at its best.
       
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    30. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      A comedian can also take a serious tone when needed. This is the French comedian (among other talents) who represents the French tinnitus association ("France Acouphènes"). Even if you don't speak/understand French, you can tell that she isn't joking about it.

      Association France Acouphènes - Témoignage...
       
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