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May 2006 Newsletter
The Women’s Newsflash
WELCOME to the May edition of the newsletter of the NSW Network of Women with Disability!
While this year is shooting along and it was a while ago, I hope everyone had a great New Year. Happy Easter to those who celebrate and hope you didn’t gorge yourself too much on chocolate.
I’d like to say a very hearty ‘thanks’ to Lois, Alison and Kerri who have contributed articles. We’d also love to receive YOUR contributions - this is YOUR newsletter - so send them in. It could be a review, a story or interview, an opinion on something that relates to us, or an experience, poetry, artwork, or even a great recipe to share.
As always, let us know what you think and what you’d like to see in future editions of your newsletter.
Also thanks to Catherine and Lois for helping to put the newsletter together.
Read on and enjoy...Cheers, Joanne
Diversity
While talking about our network the word that has been popping up lately is diversity. We as a group have very little in common. We are women and we each have a disability which has various impacts on our lives and affects our sense of empowerment control or confidence in different ways.
Each member of this network is different, unique We come from different cultures, Have different family lives and experiences, We are from various generations. Have different political views Different religious perspectives Live lives with various sexualities, in relationships or single We live in inner Sydney or throughout this state in various towns or regional areas We come from and live in different classes and with different social expectations. We enjoy different social activities and lifestyles We eat different food Speak different languages and Well there are numerous social or personality types that make each one of us unique, with different needs desires and expectations from life and from the Network. Yet we as a network are surviving, not just surviving but developing, growing mainly because these differences are the strength of our network.
We need the radicals to stand up and fight, we need the conservatives to work from within, we need the conservative radicals and the radical conservatives and any shade within. We are all important, the do-er’s and the thinkers, the supporters and the cheer squad. We can support each other in various ways by challenging, encouraging, speaking out and holding our tongue. To be strong as a network we must be able to hold each other up. To support is not just to encourage the strengths it is to recognize the flaws and support people in finding a way through them. None of us are superhuman we all have our share of fears or hardships. So I encourage all those out there who want to be involved speak out. Tell us what you need or would like the network to be and how we can support your involvement. Through this year the ANZ training projects will start to roll out but there is much more we can learn from each other than could ever be covered. Everyone within the network has valuable Skills and Resources, Knowledge and Experience to share, and each of us have the capacity and desire to learn something valuable. I want to learn crochet.
I’m a rambler, I’m an occasional do-er, I hope I encourage those around me but what I’ve got out of the network is more than I imagined when joining. For me it’s a place where I can be my flawed silly serious sometimes antisocial self in safety (Try saying that 3 times really fast), and still feel a sense of fulfilment in getting some work done. What would you like from the Network? How can the Network help it happen? There are many avenues for contact on the back page, the beehive members are happy to chat, the WOW team is back in the office Tuesday to Friday (I’m best after lunch), but whoever you are, you are welcome and valued. Oh and I’m serious about the crochet. Is anyone willing to teach a novice?
- Lois Gilmour
Hi everyone!
We – Cathie Phoeda and Kerri Thorne – have been employed, since January, as Project Workers on a part-time basis for the NSW Network of Women with Disability. This 3 year Project has come about as a result of a successful grant submission to the ANZ Charitable Trusts in 2005 by Sharon Smith [our then fab Project Worker]. Some Networkers may know Cathie from her involvement with the Newcastle gathering and her travel articles. Kerri has previously been active within the Network’s Sydney City gathering and as an enthusiastic Office Wench.
The aim of the ANZ Project is to continue the development of the Women’s Network across NSW and enhance the capacity of women with disability who are members of the Network to: - create and pursue opportunities for making systemic changes to enhance the lives of women with disability; - identify and pursue strategies to enhance the rights of women with disability; promote the participation of women with disability in community life; - develop and maintain projects identified by the Network which fulfil the aims of the Network; and to also - sustain the work of the Network [e.g. gatherings, website, WomenLikeUs e-group, newsletter, Office Wenches, BeeHive]
More information about the activities, skills training, and resource to be developed throughout 2006 shall be circulated to the Network membership in the coming months. If you have any questions or comments to raise in relation to the ANZ Project, you can speak with any of the Network’s reps on the ANZ Steering Group. These women are Bronwyn Moye, Lori Grovenor, and Catherine Shepherd.
Rest assured its shaping up to be an exciting year for the Network!
Cathie and Kerri can be found and/or contacted at the Women’s Network desk in at the PDCN office. We are working 18 hours per week over the following weekdays - Monday, Wednesday, Thursday & Fridays.
T 02 9552 1606 Freecall 1800 688 831 TTY 02 9552 1370 E cathieandkerri@pdcnsw.org.au A Cathie Phoeda & Kerri Thorne, ANZ Project Workers NSW Network of Women with Disability c/- PDCN 3/184 Glebe Point Road, GLEBE NSW 2037
Alison’s Story
December 1982 I leave teaching and bored, go to the library. The first biography I read is about an angelic boy with autism. He has a haunting beauty and I can’t get him out of my thoughts. I remember his face in my dreams but push him out of my mind.
January 1984 We are blessed with a daughter. She’s strong and alert.
February 1984 I return to work. My daughter beams at my clients. She screams as I reach my driveway. She sleeps 4 hours in 24.
May 1985 She starts day care and tells me that she wants to wear a frilly dress. She refuses the plain clothes I lay out.
February 1986 I start a women’s group and she holds court and counts the days till we go again.
February 1987 She asks me not to stay at her first day of pre-school as it will embarrass her. "Well, I'm 3 aren’t I?" she quips as I leave.
February 1989 She enters school already reading. I find her father crying at the school gate but he denies it.
1990-92 She wins academic prizes each year and enjoys art, craft and drama.
1993 She says school is boring and loses several friends. I find her crying on the way home but she can’t say why. I have to hold her hand and take her to the school room. She looks anxious each day. She is the victim of relentless bullying. We try mediation, threats and ignoring them. Nothing works. The school is surprised but does nothing. My mother says I’ve made her dependent on me. I can’t think how and feel angry with myself.
June 1994 She has a teacher who encourages her. She feels it’s a phase that will pass. I sigh with relief.
June 1995 She is miserable at school and break times are the worst. I’m told I’m a bad mother and need to let her grow out of it and stop worrying.
February 1996 She has one friend and clings to her.
February 1997 She enters High School. I have high hopes of fresh start. She calls me distraught on the phone because the school has left her behind at the swim carnival. She’s been missing for 45 minutes. I find her sobbing at the pool.
May 1997 She’s left behind at the sports’ field and didn’t notice the high school get on 5 coaches. I feel a pit in my stomach. Something’s really wrong. June 1997 She misses a school mufti day and I ring to see the Head Teacher. I’m told “to leave her be, let her grow up and stop ruling her life.” I’m angry but don’t know what to say.
October 1997 She still doesn't have her teachers' names right and misses notices at Assembly. I take her to a Paediatrician and Psychologist. They diagnose ADD.*
February 1998 She starts Year 8 and can’t cope with 17 teachers and 10 subjects. She has bouts of crying and explosive temper tantrums. The doctor says it's hormonal. She's 13. She starts dexamphetamine and finds it useful for concentration.
May 1998 I find her sobbing in her room when faced with 6 assignments. It takes 45 minutes to comfort her.
June 1998 She has 2 panic attacks each week; always at home. She confesses that she's been teased and bullied for 15 months. I ring the school again. They promise action. Nothing happens.
July 1998 I read a pamphlet on Aspergers Syndrome that slaps me in the face. "Resistance to change and inflexible" describe her perfectly.
August 1998 we go to a Paediatric Psychiatrist and he diagnoses Asperger's Syndrome.* He nods a lot as I blurt out her history.
September 1998 I visit the school nearly daily to see all 17 teachers. I write to each one. The Year Adviser tells me "refrigerator mothers" cause Autism. I am speechless and incensed. I leave the room and refuse to meet with her.
October 1998 She continues with dexamphetamine and counselling. She wins 4 academic prizes.
December 1998 She is invited out by a girl from school. Her first invitation. I try to act low key but it’s a milestone. She draws up a timetable for every hour of everyday for the 6 week Christmas holidays and demands to know in advance what we'll do.
February 1999 She makes the Principal's Honour List for 8 subjects and wants to know what she did wrong on the other two subjects. I explain for the hundredth time that she's working so hard there's not a lot to improve. She spends 4 hours rewriting notes from 2 years ago. I stop her. She re-starts when I go to work. She wins a State wide Science Award and Australia wide Maths award. She doesn't tell us until they arrive in the mail. She begs me not to go to the school as one of the staff told her "how could you be so bright and have a problem?" She's already studying for her finals 9 months away.
April 12 1988 We are delighted with our second daughter. She is blonde, petite and utterly gorgeous.
April 15 1988 She has projectile vomiting. Hospital staff is unfazed but I feel that I am entering into quick sand.
May 1988 We take shifts to jiggle her in her bouncer for an hour, an hour in the pram and hour in the swing. She keeps crying.
June 1988 We leave her scream in the adjoining room so that we can eat together as a family. My food sticks in my throat. I lose 10lbs in a month.
July 1988 - October 1988 The 3 month colic stretches to six months. I start going to doctors, paediatricians and natural healers. We look back at her baby photos and realize we don't have any of her smiling.
December 1988 - January 1989 We try soy milk, more food, less food, prescription drugs and herbal remedies. She is sleeping 3 hours in 24 in half hour intervals.
February 1989 My friend offers to mind her so I can take my 5 year old to school. The baby screams for the hour. It is the sitter's only offer.
March 1989 We sit outside another specialist's office. I've waited 4 months for the appointment and he is running 1 and a half hours late. I am one hour overdue to pick up my kindergartener. Our visit lasts 7 minutes. Blood tests are ordered, they are negative.
April 1989 Her first birthday and I chide myself for hoping that this year they will find something seriously wrong with her. I'm losing my memory from lack of sleep.
July 1989 I sit in the Paediatrician's office for the fourth consecutive Friday and refuse to move. He offers me sedatives.
One week later July 1989 A repeat of last week. The paediatrician admits her to hospital for exploratory surgery.
Tune in next newsletter to read the conclusion to Alison’s Story.
Cute Puppy Story
A farmer had some puppies he needed to sell. He painted a sign advertising the 4 pups. And set about nailing it to a post on the edge of his yard.
As he was driving the last of the nails into the post, he felt a tug on his overalls. He looked down into the eyes of a little boy. “Mister,” he said, “I want to buy one of your puppies.”
“Well,” said the farmer, as he rubbed the sweat off the back of his neck. “These puppies come from fine parents and cost a good deal of money.”
The boy dropped his head for a moment. Then reaching deep into his pocket, he pulled out a handful of change and held it up to the farmer. “I’ve got 39 cents. Is that enough to take a look?” “Sure,” said the farmer. And with that he let out a whistle. “Here, Dolly!” he called. Out from the doghouse and down the ramp ran Dolly followed by four little balls of fur.
The little boy pressed his face against the chain link face. His eyes danced with joy, then he saw something else stirring inside the doghouse. Slowly another little ball appeared this one noticeably smaller. Down the ramp it slid. Then in a somewhat awkward manner, the little pup began hobbling toward the others, doing its best to catch up.
“I want that one,” the little bou said, pointing to the runt. The farmer knelt down at the boy’s side and said, “Son, you don’t want that puppy. He will never be able to run and play with you like these other dogs would.”
With that the little boy stepped back from the fence, reached down, and began rolling up one leg of his trousers. In doing so he revealed a steel brace running down both sides of his leg. He looked up at the farmer, and said, “You see Sir, I don’t run too well myself, and he will need someone who understands.” With tears in his eyes, the farmer reached down and picked up the little pup. Holding it carefully he handed it to the little boy. “How much?” asked the little boy. “No charge answered the farmer, “there’s no charge for love.”
The world is full of people who need someone who understands.
Disability, Pregnancy and Mothering
Are you a woman with disability and also a mother? Are you pregnant? Do you want to have children but don’t know how to find resources? Are you looking for information and support? Mothers who are members of the NSW Network of Women with Disability are getting together — join The Mother’s Network!
Contact Sonia on 9576 5282 or Email: sonia_markoff@hotmail.com if you’d like to know more.
Planning Sessions
The NSW Network of Women with Disability had 2 planning sessions in March/April this year, where we were introduced to the ANZ Project Workers – Kerri Thorne and Cathy Phoeda - and brainstormed our shared vision for the Network.
Kerri talked about how the ANZ Project came about: funding application through the ANZ Charitable Trust was successful and ANZ Project Workers commenced employment in January of this year. The ANZ Project sits within the Network and will be a valuable resource to build and sustain the Network.
Before discussing the ‘shared vision’, people present voiced any issues they had.
The following is a list of issues arising within the Network: Division – members separating from each other Issues of Inclusion within Network for women: ~ from non-English speaking background ~ from rural areas ~ with intellectual disability (and raising general awareness) ~ with mental health issues ~ with brain injury (and how impacts of injury could change over time
Balancing the needs of women in paid/voluntary employment and women who are not employed; e.g. activities, meetings, times, venues. Women’s Office Wenches: more office wenches with skills needed. Sustainability: ~ How do we sustain the Network into the future? ~ How do we sustain the social side of the Network? Communication Issues: ~ Barriers for women with [multiple/diverse] disabilities and back grounds from both rural and metropolitan areas
Create a “shared vision” for the Network
A draft version of the “Shared Vision” for the NSW Network of Women with Disability was created:
The Network includes women with all types of disability, from all backgrounds and living in all parts of NSW. We join together to have a voice for women with disabilities. We respect, accept and value each other. We celebrate our differences and strengths as women with disability.
Brainstorming of ideas for the shared vision. Some of the key words and phrases included:
Social Justice, respect, acceptance, union, valuing differences, helping each other.
Roadmap to achieving the “Shared Vision”
The following were identified as being a list of ‘destinations’ for the Network: Incorporation Women’s Office Wenches (volunteers) confident and competent in their tasks (email, filing, data input, admin. duties), which may also attract more volunteers Newsletter (plain language version; communication strategies; graphics by ‘Streetwize’) Networking with other organisations Sustaining the social/fun aspect of the Network Increasing our awareness of various disabilities (education/training; strategies for inclusion) Strategies for inclusion of women from NESB and Aboriginal women Reaching out to vulnerable women or women with no voice; eg. Women with Intellectual Disabilities Lobbying (long-term) for equal access to Health, Transport, Income Security, Reproductive Rights, Personal Safety. Office for the Network; own office space and other strategies for non-metro groups Review Local Gatherings to improve them (consider creating a ‘buddy system’ for women who are isolated; investigate the telephone ‘party line’ idea; look at other local strategies)
FLOWCHART FOR COMMUNICATION AND DECISION-MAKING
ANZ Project Workers (logistical link to) PDCN
ANZ Project Workers (administrative link with) MDAA: I. ensure ANZ Project Workers fulfil the requirements of the contract Ii. account for the funding money Iii. support and supervise ANZ Project Workers
ANZ Project Workers (this link goes in both directions) ANZ Steering Group Representatives from: MDAA PDCN BeeHive (this link goes in both directions) BeeHive i. Need to create a ‘Terms of Reference’ Ii. Responsible for sorting and prioritising ideas: - take all input from Network members through ‘suggestion box’ - sorts them into who does what, i.e. Regional Groups, Project Workers or Network - passes on decisions for ANZ Project Workers to the Steering Committee through its Representatives (Cathy, Lori and Bronwyn) (this link goes in both directions) The Network All members of the Network here: Individuals Regional groups Gatherings Projects WomenLikeUs
Network Gatherings
Campbelltown:
First Friday of the month at
Hannah’s Room Benevolent Society 288 Queen’s St Campbelltown Contact Macarthur Disability Services for further information on 4621 8400
Gordon:
First Wednesday of the month
Contact the Women’s Office Team for location on 9552 1606
Penrith:
Second Monday of the month 10.30am-2.00pm at
First floor Community Connections Building 114-116 Henry St Penrith
Burwood:
Second Friday at 2.00pm-5.00pm at
Sandwich Scene Burwood Plaza Conder Street Burwood
Coffs Harbour:
Second Tuesday at 11.30am-2.00pm
Coffs Harbour Community Village 22 Earl St. Coffs Harbour
Sydney City: (every 6 weeks) at 11.00am-2.00pm
Mona’s Café Pitt St City
Ambleside Tours
Tours for people with disabilities
AMBLESIDE TOURS is operated by Carol and Woody Marriott.
Fully escorted interstate tours Day and weekend trips Carers provided
While this is a Victoria based company, they say that they do interstate tours so I think if anyone is interested in tours and travel it would be worth enquiring further.
Your needs are our concern
Are you a person with a disability who would love to take day trips, weekend tours or travel interstate, but can’t imagine how your needs can be met and your dreams fulfilled?
Would you like a companion who can accommodate your special requirements while you travel?
All trips and tours are subject to care requirements, travel arrangements and availability of suitable accommodation.
A required number of applicants will be required for any trip or tour to be viable
Ratio of care attendants to the number participating will depend on care needed.
Support, equipment, dietary needs and other factors will be taken into consideration
Examples of tours offered by Ambleside Tours:
Day trips and theatre parties Steam Train trips Phillip Island Swan Hill Central Australia Gold Coast Tasmania Ballarat—Grampians Flight over Antarctica Others as requested
Contact Details:
Ambleside Tours 34 Stoda Street, Heathment, Victoria 3135 Telephone (03) 9720 9800 Fax (03) 9729 0038 Email Marriott@alphalink.com.au Website www.amblesidetours.com
People with any DisAbility are eligible to apply. Family and medical advice will be taken into consideration
Peer Support Chatroom for people with Spinal Cord Injuries
The Spinal Cord Injuries Australia chatroom aims for people with SCI (and similar disabilities) to share information and receive support, especially for those who might otherwise be unable to meet.
The chatroom is hosted by Yahoo! Signing up for and using Yahoo! can be a daunting task, so two guides, "How to sign up for Yahoo!", and "How to use the SCIA chatroom" to help those who are relatively new to the internet. The SCIA chatroom is http://groups.yahoo.com/group/sci_chat
If you want more information or to provide feedback, contact SCInfo on 02 9661 8855, 1800 819 775 or email information@spinalcordinjuries.com.au
WOMEN WITH DISABILITIES NEWCASTLE (WWDN)
Women with Disabilities Newcastle is a social and support group for women with a disability in the Newcastle and Hunter Region.
WWDN is run by women with disabilities, for women with disabilities.
WWDN is inclusive and does not discriminate against any disability.
WWDN is run collectively so that all members have the opportunity to have their say in the running of the group.
To become a member, or for more information contact Tanya: (02) 4953 8246 or 0414 854 976
WomenLikeUs
It one way we in the Network connect with each other.
It is only open to individual women with disability who are members of the NSW Network of Women with Disability.
If you would to know how to join womelikeus, call the Office Wenches on Ph 9552 1606 or send an email to; women@pdcnsw.org.au
We recognise that not all everyone has access to a computer or the internet. We don’t want to disadvantage women in this position. Emails from this list are printed off once a week and snail-mailed to women who are part of the Network but who don't have access to the internet/email.
What is Acquired Brain Injury?
Acquired brain injury refers to any type of injury to the brain that happens after birth. The injury can be the result of external trauma such as motor vehicle accidents, falls and assaults, or from non-traumatic (internal) causes such as stroke, tumours, aneurysms, infection, poisoning and other situations when the brain does not get enough blood or oxygen.
Traumatic brain Injury (TBI) is an acquired brain injury caused by an external force. This could be a blow to the head or by the head being forced to move rapidly forward or backward. It is usually accompanied by some loss of consciousness. This may be the result of a motor vehicle accident, assault, fall, or from being shaken. As a result of this blow or rapid movement, the brain may be torn, stretched, penetrated, bruised or become swollen. Oxygen may not be able to get through to brain cells and there may be bleeding.
You don’t need to lose consciousness to sustain an acquired brain injury.
Effects of a brain injury
People who have an acquired brain injury may be affected in a variety of ways, Including:
Cognitive Sensory Physical and Behavioural or personality changes
Cognitive disabilities after brain injury can include: Difficulty paying attention or concentrating Being slow to take in and think through information Experiencing fatigue very easily Memory problems Difficulty solving problems, planning or organising Getting stuck on ideas Difficulty motivating oneself or initiating activities
Sensory disabilities can include any of the five senses. Resulting in reduced ability or complete inability to see, hear, smell, taste or feel things, or the experience of extreme body temperatures.
Physical disabilities can also be wide-ranging, and often include reduced muscle control.
Behavioural and personality changes can include: A lack of the usual cultural inhibitions (for example talking too much about personal things to strangers) Reduced self-control over emotions Having difficulty keeping one particular behaviour in check Reduced social skills Everyone who has an acquired brain injury is affected individually. Even what is termed a “mild” injury can result in a disability that will interfere with a person’s daily functioning for the rest of their lives. The types of difficulties the individual will experience depend on the part of the brain that is injured, how serious the injury is, how much assistance the person gets in recovering after the injury and individual factors (like health and personality).
Other terms that are used to refer to brain injury are acquired brain injury, brain damage, head injury, traumatic brain injury, non-traumatic brain injury, alcohol related brain injury, concussion, or post concussion syndrome.
For further information go to the Fact Sheets section under publications at the brain injury website: http://www.biansw.org.au
For more information or to get involved contact:
The Office Wenches at
Physical Disability Council of NSW 3/184 Glebe Point Road Glebe NSW 2037
Phone: 02 9552 1606
TTY: 02 9552 1370
Freecall: 1800 688 831
Telephone Interpreter Service: 13 14 50
Fax: 02 9552 4644
Email: women@pdcnsw.org.au
Internet: www.pdcnsw.org.au/network/women
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