My book editor who has a severely disabled son suggested awarding yearly and anon. relatives of those with severe disability with an award called "The Thicks" around Australia day. I'll let you have it in her own words,
Following recent Christmas ''holiday" discussions with several friends about their experiences of extended family attitudes and behaviour towards our disabled children (and family members) over the years, a proposal has emerged to institute annual national awards for "Most Appalling Comment", "Most Appalling Behaviour" and "Most Appalling Act" - or something along those lines (alternative suggestions for Award categories and/or names gratefully received). We need a name for the overall Awards too - personally I favour The Thicks (as in "Is Blood Really Thicker Than Water"?), but alternatively perhaps The Awfuls? The Hurtfuls? The Insensitives? You get the idea anyhow.
There is a serious underlying aim in instituting these Awards (eg awareness raising among rellies of people with disabilities and their carers about the desirability of being supportive and sensitive) and some degree of "Twitter and Bistedness" will no doubt be unavoidable, but I think this exercise could also be very funny - in a rather horrifying sort of way of course. (Maybe "The Twitter and Bisteds"?)
If/when any nominations are received (send them back to me, by Jan 26 if possible) - what better way to celebrate good ol' Australia Day?), I will then circulate all nominations to all on this BCC emailing list, and we can then all vote on the winners. Please feel free to circulate this call for nominations, as well as nominations themselves, to anyone you think might be interested in participating.
The whole exercise needs to be kept completely anonymous - for a number of reasons, including the fact that under Australia's defamation laws, truth is no defence - so you MUST submit nominations anonymously. I'll delete any give-away email addresses! Also do NOT name the person nominated. Just "A Relative" will do - unless you REALLY want to (anonymously) stick the knife in, in which case you can be a little more specific, as in: my ex-mother-in-law; my ex-spouse/child's father; one of my siblings etc.
Once Awards have been presented to the "winners" (in complete absentia, needless to say), I will then write a piece about this exercise for Link Magazine, which I will also then subsequently attempt to get reprinted in a mainstream newspaper or magazine. So the funnier and more appalling, the better.
There is another serious underlying aspect to this exercise as well, given that many of the mainstream disability charities are now attempting to plug the yawning and ever-growing gaps in service provision by suggesting to desperate parents that they approach "extended family members" for more help and support. After all, if that was good enough in the 19th century and for Bangladeshi peasants, why not us?
Another important aspect is that - just to add to the general jollity of our situations - we now have in our midst various "normalisation" advocacy organisations (all thriving on hefty govt grants each year of course) who are all about promoting touchingly idealistic little notions like establishing local community/extended family "Circles of Support", thereby enabling our severely disabled offspring to live happily at home with us until they are 80, and eliminating the need for anything so gruesomely abnormal, and so last century, as supported accommodation options.
I have attended seminars of this type with other mothers who have left in tears, because this wonderful-sounding theory is so totally and utterly divorced from their personal day-to-day reality, and it makes THEM feel like failures. (Although, to be fair to the "normalisation" mob, they do have one example of a successful "Circle of Support" they can point to. Only trouble is, they have been pointing to this same one example for the last three years. Will be fascinating to see if they trot it out again at this year's seminars.)
So - all in all, I think it's about time that those of us who live in the real world, without advocacy funding, fight back!! That said, I think it is also very important as part of this exercise to first up acknowledge and express appreciation for those extended family members - and there are many - who are wonderful, and who help keep many of us as close to sanity as we are ever likely to get. We don't want to sound like completely ungrateful whingers. But...
Finally - and I apologise for going on and on - I see this as one small way of helping promote via the media the urgent need for a National Disability Insurance Scheme. Way too many people "out there" assume that people with disabilities and their parent/carers get plenty of help already, from government, disability organisations and extended family members. Let's disabuse them heh?
I think this is also a truly fascinating sociological issue. Why, if blood IS thicker than water, as we all tend to assume (or many of us anyway) - then why do we parents so often experience far more kindness, empathy and practical day-to-day on-the-ground support from people - who start off at any rate - as complete strangers, rather than our own flesh and blood? In theory, OF COURSE it's reasonable to expect help and support from one's own extended family if one is in genuinely dire need of it. Pre-Welfare State, that's how societies operated for thousands of years. So why do so many of us not only get no offers of help from many family members, but experience total apathy and indifference from them at best, or outright rejection and extreme nastiness at worst? Is this evidence of some primitive biological urge in human beings, left over from caveman days, when anyone who was sick, feeble or otherwise represented a threat to the survival of a small family band of hunter/gatherers was automatically thrown out of the cave and left to die from exposure and starvation? Maybe so many of us experience so much rejection and nastiness from family members not despite blood links, but because of them...
And if so, then what does that say about societal attitudes, at their very heart, towards people with disabilities in general? Is this why I so often instinctively feel the need to apologise for my and my son's existence?? Is this why The Spastic Centre, for instance, sees nothing shameful or disturbing in loudly advocating the need for pre-birth screening tests for cerebral palsy (including on a big billboard outside McLeod House itself), so the parents of any foetus found to be affected can choose for them to be aborted with a saline injection into the heart, like we currently do to foetuses with Down Syndrome?
Maybe some of those university academics now receiving hundreds of thousands of dollars to write papers on topics like "resilience among carers and how to foster it, in the absence of sufficient Govt funding for support services, partly because so much is wasted on academics" (their findings: make sure there is plenty of support from extended family!) - maybe they might also care to know about our Awards?
So - get nominating guys, and let's start exposing some of the worst instances of prejudice, nastiness and rejection, from our own - nominally - nearest and dearest, experienced by those of us living on Planet Disability."
A bit of a read but my experience is exactly the same as hers. Where she says "then why do we parents so often experience far more kindness, empathy and practical day-to-day on-the-ground support from people - who start off at any rate - as complete strangers, rather than our own flesh and blood? " Apart from our daughters who even as little kids were specially helpful - we had a bit of help from some but some alarming examples of shocking treatment from some relatives. I have put in two examples for the "Appalling behaviour section"