newsletters, publications and articles
news | events
| GSAW| Family
Day| March-April 2009 Update
newsletters
Missed an issue? Looking for an article or information on a past
event? Welcome to our wall of GSNV newsletters! As you can see,
we have most of our newsletters available for download, going back
as far as 2000... Have an issue we've missed? Contact
Catherine - she'd love to make the archive complete.
publications
The publications below are available for viewing/download as .pdf
files. Click on link to view file.
 If
you do not have a copy of Acrobat
Reader to view pdf files, the latest version is available for
free download from www.adobe.com
- Checklist
for families
A list of frequently asked questions for families with a child
who has just been diagnosed with a genetic disorder.
- SMS Family
day
The text of a poster presented at the Human Genetics Society of
Australasia conference in Adelaide in July 2002
- What Makes
a Quality Genetics Service?
The text of a poster presented at the Human Genetics Society of
Australasia conference in Adelaide in July 2002
articles
For centuries humanity has been shaped by words and language to
convey ideas, perceptions, attitudes and feelings and this is our
primary form of communication. In particular, sense of self worth,
self image and self esteem are all affected by the use of positive
or negative descriptive language. Aside from individual communication,
language reflects the general attitudes of society, which language
on the one hand if negative, acts as a barrier for those with any
level of disability and conveys negative stereotypes and misconceptions.
Positive attitudes on the other hand can help society and those
with various conditions by simply being considerate about the tone
of what is said about people affected by these conditions and the
conditions themselves. Most importantly, the use of appropriate
words and language can actually change attitudes toward people with
disabilities by referring to them and their conditions accurately.
The use of appropriate language by medical and associated health
service professionals is especially important.
- Tony Briffa
There is no question that language can be laden with hidden meaning.
Most of the professionals who work in genetics (doctors, social
workers, genetic counsellors, scientists) are aware of the need
for choosing their words carefully and sometimes struggle with this.
Technical accuracy of words must be balanced with sensitivity to
the unspoken subtle connotations some words hold. Words that were
once considered fine to use, may now be inappropriate due to changes
in common language and changes in societal attitudes.
- Eilís Hughes
Transitioning from paediatric health care (eg RCH - the Royal Children's Hospital) to the adult health care system may sometimes be stressful for the young person and/or their parents. The RCH web site has a special section just for transition, including information for the young person, the parent/s and for health care professionals. Thanks to he RCH Transition team for allowing us to reprint information from their web site. To find out more, visit http://www.rch.org.au/transition or speak with your health care provider.
- Leah Lonsdale
The following article, written for Down Syndrome Association Victoria, and published in Down Voice, Winter 2007, is relevant to many who have or are affected by genetic conditions.
Advocacy is key to improving services available to people affected by genetic conditions. Politicians and the general public may not be aware or may only be partly aware of the issues faced by people affected by genetic conditions, the sorts of services they need, and what services are available. Teachers, leisure activity organizers and health professionals may also not be aware of the issues and problems.
People affected by genetic conditions (such as Down Syndrome) are often well informed about the condition in their life, and know firsthand what it means to be affected by that condition. We are also aware of the individual needs of the person with the genetic condition and how the condition impacts on daily life. This means we are well placed to advocate on issues that affect us, our child and/or the person we love who has a genetic condition.
- Leah Lonsdale
hall of fame
Anna Forsyth
Anna Forsyth is a Legal Officer with the Human Rights Unit at the Victorian Equal Opportunity & Human Rights Commission.
As a legal officer with the Victorian Equal Opportunity and Human Rights Commission who do you work with?
I work in a team of four lawyers in the Human Rights Unit at the Commission. I spend a great deal of time assisting state government departments, local councils and other organisations like the Ombudsman Victoria, Privacy Commissioner and Health Services Commissioner understand their human rights obligations. I also work with community sector advocates, academics and other human rights experts.
- Penny Dodds
Frank Hall-Bentnick
Frank Hall-Bentick has a life-long disability. His outstanding efforts have contributed to improving human rights for people with a disability.
He lives in Melbourne and has been involved in disability empowerment for the last thirty years. During this time he has been employed in the Equal Opportunity Unit of the Australian Public Service Board, as Coordinator of Disability Resources Centre and as a Disability Officer at Centrelink.
Since 1981, the International Year of Disabled Persons, Frank has been at the forefront of disability rights in local, state, national, regional and world organizations, founding and leading many of these groups. For the last fifteen years he has worked closely with the United Nations in Bangkok as Resource Person and invited Expert. More recently he has been an active member of the International Disability Caucus and its work on the United Nations’ Convention on the Rights of People with Disabilities in both Bangkok and New York.
- Penny Dodds
reports
Andrew Williams presented a seminar on Fundraising for Support Groups. Jane Timms has kindly allowed us to publish her report (originally written for the S.C.A. Support Group Newsletter) on our website.
- Report by Jane Timms
The ‘Involving People in Research Symposium’ was held in Perth in March. It was a highly interactive forum for people interested in supporting and promoting representation and community involvement in all major facets of the research process. Half of the conference showcased examples of community/researcher partnerships. The other half of the conference was highly interactive and included discussions about barriers and how to work around/eliminate these barriers.
- Report by Leah Lonsdale
Over 60 teachers’ assistants took part in a full day of training run by the Jewish Schools Integration Programme at Bialik College. All nine Jewish Day Schools in Melbourne were represented. The aim of the day was to help the assistants understand what it is like for a child to have a disability and the impact this has on the family.
- Report by Sharon Goodman
reviews
ANSWER - Antenatal Screening Web Resource
All pregnant women in Australia are offered screening and testing. Whilst this web site, ANSWER, is based in the United Kingdom, it does provide basic information about the screening and diagnostic tests available to all pregnant women, even in Australia. ANSWER offers balanced information about disability to help you and your family decide whether to test, or not to test, whether to continue with a pregnancy, or not to. We would always advise you to see health professionals, and ANSWER cannot tell you what to do, however it may help you understand your options more.
- Review by Tarli Bogtstra
Too Late to Die Young - Nearly True Tales from a Life (Harriet McBryde Johnson)
"I used to try to explain that in fact I enjoy my life, that it's a great sensual pleasure to zoom by power chair on these delicious muggy streets. But it gets tedious. God didn't put me on this street to provide disability awareness training to everyone who happens by…
"For me, living a real life has meant resisting these formulaic narratives. Instead of letting the world turn me into a disability object, I have insisted on being a subject in the grammatical sense: not the passive "me" who is acted upon, but the active "I" who does things. I practice law and politics in Charleston... I travel. I find various odd adventures. I do my bit to help the disability rights movement change the world in fundamental ways.
"And I tell stories."
- Review by Catherine McLean
There's No Such Thing as a Silly Question: A practical guide for families living with a child with chronic illness, disability, mental illness or a life-threatening condition
“After 2 years I decided that it wasn’t fair on my son that we lived his life thinking he was always going to die. While he was here it was his right to live a full, active and happy life. This was my turning point. I now believe that he will choose his time – not doctors, not text books, or history, but him.”
“I wished someone would have told me that I would be happy again, that I would sleep again and that this raw pain would ease and that I would dream new dreams.”
“Remember to enjoy your child for who they are and what they can do, rather than for what they are unable to do.”
- Review by Tarli Bogtstra
For more information on anything
you’ve read here, please contact Catherine or Leah in the
GSNV office on (03) 8341-6315.
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