Whose Voice Are We Really Hearing?

I had the opportunity to be a media whore a while back… and I said no.  I don’t want it.  I mean, yeah, the attention would be great and blah blah blah, but at the end of the day – it’s not for me.  I went to a conference once where people obviously saw my name tag and knew who I was, and that was cool, but not cool enough to put up with major exposure.  I like not having my every move analysed by the general public.  If being a writer ends up with more exposure, then that is a price I’m willing to pay – but I’m not after the exposure for the sake of the exposure.  I don’t want it.

In short – I know a lot of people who want the spotlight, and they can have it.

I do want to write.  I want to use my brain and I want to advocate.  I’d love to write speeches.  I’d love to write press releases.  I’d love to write articles and work on websites.  I want my byline on my articles unless I’m getting paid for them, but other than that – I’m happy to do it all behind the scenes and have no one know.  I want to feel useful, even if I am stuck at home all the fucking time.  I want to feel as though I am contributing to the world instead of just taking from it.

Over the last few weeks, I have offered my services to more than three organisations – for free – and with no obligation.  Simply – please read my stuff, or please let me know if you are interested in my idea.  I am not trying to step on anyone’s toes.  I am not trying to make a name for myself.  I am not trying to even get paid!  Yet despite ALL of these organisations sprouting the idea that they WANT people to have a voice, I don’t even get a courtesy reply back telling me that they think my work sucks, or they simply aren’t interested at this time.  Nothing.

I get that when they say “we want people to have a voice”, what they mean is “we want our spokesperson to have a voice”.  Which is why I’m willing to work behind the scenes.  I get that I’m not qualified or have professional experience (per se – I am published and I do have experience (thanks largely to Barbara, who has done more for me than she’ll ever realise)), which is why I’m willing to earn my stripes and work for free.

I don’t understand why I am hitting all these brick walls.  I don’t get it.  They want help – I’m willing to provide some.  I wonder if my personality is “wrong” but then why should that matter unless it comes out in my writing?  Is my writing crap?  Then why don’t they just tell me that?  I want to do this and I’m willing to put in the hard yards in the form of multiple edits if need be (for no pay!) – which is a damn lot more than most people are willing to do!

And I get that most NFP’s and NGO’s are someone’s power trip – which is why I’m willing to work behind the scene’s.  No one needs to know that I’m there.

So am I doing something wrong and/or what else can I do?  Is this just how it is?  Do I just have to accept that someone living in a rural town who is housebound (and therefore can’t network at conferences etc) has no chance, even in the technological age?  Am I really destined to do nothing more creative than write a blog and scrapbook for the rest of my life?  In which case, kill me now please.

I’m not stupid enough to think that life is fair, but the idea that the lazy idiot at McDonald’s can keep a job, and I can’t even land a volunteer position… that really bites at one’s self-esteem!

And what about all those organisations that sprout their shit about wanting “people” to have a voice, when really, what they mean, is “they” specifically want a voice?  They all follow the same formula – it goes like this:

(Shout from the rooftops) – We want people with a disability to have a voice.  We are the voice of the people!

(Small voice from the crowd) – Can I help out as a volunteer?  I don’t want anything in return.

(More booming) No!  You can join our ranks and support us so that we have more numbers and our elite top can have THEIR voice heard.  We will tell you what to think.  We will do all the work ourselves, and then complain that we have so much work to do.  We will use your numbers to show how great we are, and then we will bitch about other NFP’s and NGO’s that do this same thing.  We will abuse our members, then we will do talks about how others have abused us, often in the exact same week (Ok, this last one is a real life example of an individual, not an organisation).

We will be hypocritical little mother fuckers and we will then be hypocritical little mother fuckers when we tell the world that we are not hypocritical little mother fuckers.

Oh, and then we’ll get all the glory and praise for being such wonderful people and doing so much for our community *sob sob*.

So, I’m fully aware that by writing this out, I’ll be burning a shitload of bridges.  I figure though, that being nice isn’t doing me much good anyway, so I have a choice – continue on in the insane hope that things will change, or say something that needs to be said.

I don’t really do sitting in a corner with my mouth shut too well.  Especially when something needs to be said.

Now… I’m going to start thinking about ways in which we can ensure that people really DO have a voice!  Anyone.  Regardless of what disability they have, or where they live, or even regardless of whether they can master basic grammar!  I want all people with a disability to be able to be heard.

I just haven’t figured out how to do that by myself yet.

Disability consumer and activist. Pissed off since 1995... Mad as a hatter since way before that.

Tagged with: ,
Posted in Autism, Disability, Ehlers Danlos Syndrome, Mental Health, Personal
3 comments on “Whose Voice Are We Really Hearing?
  1. Fiona says:

    I like your blog entry & I had this thought, why not share other peoples thoughts, praise, happy stories, cranky rants, meloncholy penchants etc on a blog of your own? One a week from a community that you build. Mix it up a little so it isn’t all about griping because constant griping can become a bit boring.
    Thanks for sharing.

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Pissed off since 1995. Mad as a hatter since way before that.

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Maxie 😺 sleeping on my stomach... Which she has been doing non stop for two months now!!! Cats know shit!!! 😳😻 So, I’ve been unusually quiet lately... Needed to talk to family first... I have grown a granuloma thing near my belly button, that’s also causing a dent in my stomach, and despite testing, doc doesn’t know why. One thing led to another, and now I’ve ended up in the “testing for cancer” stage. Stomach has been ruled out. I need the hospital to stop losing my referrals so I can find out about bowel. Something is definitely wrong, obviously things are more complicated than one can write about on social media, but hopefully it’s just one of those pain in the arse things (😂) that isn’t actually fatal. All of this had a little bit to do with our “LET’S GO ON A FUCKING CRUISE - OR TWO!!!” bent 😂 So if you’re wondering about that, this is one reason why we have decided this trip is so important. And no, we are not paying for all of it from our measly pension. Nor are we doing anything illegal, or starving our children. Apparently, people were wondering??? 😆 So that’s my latest. I’ve been quiet because I’ve been really fucking sick 🤢 and sleeping 😴 for 18 hours a day every chance I get. And I’ve prioritised a trip 🛳 (plus a dry run trip 🛳), that incorporates a lot of our family’s bucket list to do’s because we’ve been reminded life isn’t forever ❤️
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  • Maxie 😺 sleeping on my stomach… Which she has been doing...
    Maxie 😺 sleeping on my stomach… Which she has been doing non stop for two months now!!! Cats know shit!!! 😳😻 So, I’ve been unusually quiet lately… Needed to talk to family first… I have grown a granuloma thing near my belly button, that’s also causing a dent in my stomach, and despite testing, doc doesn’t know why. One thing led to another, and now I’ve ende […]
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