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"Our children just want to be cool, to be one of the group and to be treated the same as everyone else"
"Our group is about our individual talents being pooled to create this very strong and energetic force!"
Some very positive.....
"Sam makes it known that he just wants to be like everyone else. He's on the same timetable as everyone else and included in the same things in the class. He knows that some of the work he is given, and the expectations of project work, might be different. but as far as joining in all class activities and being part of the class it's just what he expects."
Another parent struggled to obtain inclusive education for her son with multiple disabilities. She succeeded in transferring him from a special school into the last year of the local primary school:
"It was the best year that Chris had ever had in his life because he was able to enjoy doing what other kids had done all their lives. Initially there was a lot of hesitation and negativity from the school who had never met anyone like him before. However we were very fortunate that we had a principal who was very open and a teacher who was prepared to give it a go.
Attitudes changed dramatically in the first year. Although they were initially very afraid, they soon realised that he had different gifts and talents and that he was a young boy after all. They learnt to see that the disability wasn't Chris, but that Chris was an individual who had a personality, and who had the same likes and dislikes as other children of his own age. It was a learning curve for the whole school! Chris was a pioneer. He was the one who made the journey."
And others not so positive.....
"My son, who has severe multiple disabilities, was refused a school place by the State Education Department. They told me that my only option was to teach him at home. I finally managed to persuade a private school in the Catholic education system to accept him for 3 days a week."
"Since our family moved 100km away from Brisbane our experience of our daughter's schooling has dramatically deteriorated. In Brisbane her self-esteem and confidence grew dramatically, particularly in the last two years. She was valued, given jobs that no one ever expected she'd be able to do, like taking a note to the school Principal. Now she's not given anything to do; she's considered to be the poor little kid with the disability who can't do anything."
"To be valued equally is a real struggle"
"Our child was moved, against our wishes, from mainstream primary school to a special education unit. In mainstream she was expected to do a lot of things for herself as there were no teachers' aides, so she did not become too dependent. Now that she's in a special education unit, my daughter expects that, when the going gets tough, the teacher aide or some adult will do it for her and the learned dependency is a constant bugbear. She certainly doesn't have a teacher aide at home! If they don't insist she does more for herself she's going to be an imperious little thing who thinks she can order adults about as her own personal slaves."
As part of the International Year of the Disabled Person (IYPD), a national women's group organised an Australian Women's Conference in 1980. A few women from Queensland followed this up by holding a workshop which provided the first opportunity for about 150 parents from all over Queensland to come together for 3 days to talk about our family situation and the fact that we had a child with disability and what a difference it made to the family. There were a few men at the conference, but the majority of parents were women, and it was certainly mothers who probably had the main caring role.
The conference was very emotional. People who spoke were very angry about many issues. We felt that this energy needed to be channelled constructively. At the end of the conference there was unanimous agreement to set up a Queensland organisation to lobby around issues that were relevant to our children and families. It was a reaction against the feeling of being powerless to influence service provision and government decisions. QPPD, the Queensland Parents of People with Disability, was set up to be an umbrella organisation for all disabilities to cover the whole area of Queensland.
The plan was to have a group of parents in Brisbane (the state capital) to communicate with parents all around the state. The parents' group would:
The unique thing was that parents spoke to parents. It started out as a reactive organisation to check out what was happening and try to exert influence at various levels to make change.
We succeeded in getting a small donation from some government departments to enable two parents to travel around the state for three weeks to publicise the organisation. They stopped off at different places on the coast and walked around with big red QPPD badges. They stopped people to ask them, "Do you know of any people who have children with a disability in this town?" They talked on local radio, visited local schools and hospitals, wherever we thought disabled children might be and wandered around looking for them. They tried to include any family they came across with any disabled child.
From the first QPPD was inclusive of families from all backgrounds and all disabilities because every type of disability was represented at the original workshop and no one wanted to be left out. There was no money to start with and all the planning was done in the homes of people on the committee. There was only a small number of members in Brisbane.
The QPPD Education sub-committee was set up in 1986-7. The Commonwealth government commissioned the committee to set up a demonstration project. Two parents worked tirelessly to compel the Education Department to take responsibility for the education of students with intellectual impairment. Prior to this students with this impairment were ignored by the system. Privately run segregated 'sub-normal centres' were the only form of stimulation that a few children were receiving. This was the focus of 'inclusion' at the time - getting the government to take responsibility for all students. Special schools existed, but had primarily supported students with physical disabilities.
QPPD had representatives on about 19 state education committees, including advisory committees. They mainly worked at obtaining information and learning how to lobby and advocate.
A milestone came in the early 1990s when we became very concerned that a considerable number of disabled children were being excluded from their local schools. In response, Jane Sherwin, a facilitator from Community Resource Unit invited a Canadian parent working in community education, Bruce Uditsky, to run a 3-day workshop. The first two days were a huge event. There was great interest from teachers, workers in the disability field and parents. The third day was for parents only. Bruce sat in a circle and challenged, encouraged, and inspired us.
A meeting was called for all the parents who told their stories and described their dreams for their children. It was an informal group of interested people who wanted change in the education of children with disabilities. We drew strength from each other and got to the point of trying to clarify our vision and our values. We developed a collective voice to try to influence government and the policies of the day.
"All children with all disabilities should attend their local school. The only criterion was that they could breathe, whether assisted or unassisted. In other words, just the fact that they were alive!"
"I remember the electric feeling of fresh enthusiasm from these parents. All of a sudden a window has opened and they see so much potential and a path they can follow. The energy was just amazing and seemed to flow into the individual and give that extra bit of energy to fight their own particular battle. People would come up with unique approaches for research and various projects and it was fun too! Each person kept a check on different things. For example, my thing was to keep the focus on the child in the discussion, so every now and again I would say, ' Hang on a minute, what about the kids?"
Our parents wanted the same for all their children, whether disabled or not and that is mainly to be accepted at the school as an individual within their own uniqueness; to be welcomed and given the same opportunities as others; to be valued for who they are and not cast aside because of their label.
In order to ensure that the group was self-sustaining, the position of chair was rotated and the parent members started to take more control and ownership of the process and to take greater leadership roles. At the start we tried to increase awareness and arouse interest by word of mouth and by circulating a newsletter.
We operated on two main fronts. The first was dealing with and trying to influence the Education Department and the other was to strengthen the group itself and the individuals within it. Some parents brought considerable experience and wisdom to the group and could be asked for practical advice, such as how to respond when teachers or head teachers raise difficulties.
The group now has eighty members and holds monthly meetings by tele-conference. Ten members come together on a monthly basis by phone from all around the state of Queensland to share their experience, the challenges, and what is happening in their locality.
A public rally
We organized a city centre rally with press releases, literature, and a banner made up of all the faxes sent in support of students' desire to go to an ordinary school. It was huge, there were hundreds of faxes. We drew on the Salamanca Statement of 1994. The rally culminated in a march to the Education department building and its leaders tried to present the statement to the Minister.
National Alliance for Inclusion
A group of us formed the National Alliance for Inclusion, which includes professionals. This alliance is nation-wide although most activity takes place in Brisbane. The National Alliance published a book written by a teacher who was also the parent of a son with disability entitled, "Strategies for Inclusive Schooling". It is a collection of parent stories and information from parents as well as from teachers who were supportive of inclusive education.
"It was something different. There was always someone with a new story - often something very exciting that they had achieved or that their child had achieved beyond expectation. The stories are probably where I gained a lot of strength and what gave the group a lot of strength".
Fathers and men in QPPD mainly support their wives by doing the practical tasks with the children to enable them to attend meetings and participate. "Though we have males who hold office in the organisation as far as the nitty-gritty and the everyday discussion of education is concerned and the people who front up to the school with their kids, it's usually the mothers."
Brothers and sisters express individual views about inclusion for their sibling with disabilities. The younger sister of Chris, a multiply disabled boy who succeeded in remaining in mainstream school until he was 18, was extremely positive and changed her primary school so that she could be at school with her brother. His older brother had greater difficulty in coming to terms with it and only in adulthood realised the benefits.
"Our main struggle is against hostility to inclusion"
We see a number of tasks ahead:
QPPD tries to set priorities and goals each year. These are driven by the experiences, needs and wishes of the parent members and where their energies lie while at the same time keeping the big picture in mind and trying to work at a systems level.
We have to be alert to where there's an opening in the door to give an opportunity to influence the kinds of programmes, services or courses available. For example, where before there were no further education opportunities for students with intellectual disabilities there are now at least some courses on offer. Similarly, work opportunities were limited to training centres and sheltered workshops. These should be seen as windows of opportunity and chinks in the armour to bring about change.
A group of parent members of Queensland Parents of Disabilities (QPPD) held a meeting to discuss the questions outlined by EENET's Family Involvement project. They sent a tape of their discussion as well as a number of documents produced by QPPD.
| 1980 | National Women's Conference; |
| Queensland disability workshop; | |
| QPD established; | |
| 1981 | Access '81 Conference, "The Future Should Be Theirs"; |
| 1982 | QPD became an incorporated body |
| 1983-84 | Received funding for travel, produced newsletter, communication and lobbying workshops |
| 1984 | QPPD Education sub-committee established |
| 1985 | Office provided by Department of Education, submissions written for funding and employment of a staff member |
| 1986 | International Year of the Family; Access '86 Conference; |
| Travelling advocacy around Queensland State; | |
| QPD members involved in federal consultations which formed the Commonwealth Disabilities Services Act. | |
| QPD Education sub-committee was born; | |
| Pressurized government to take responsibility for all students' education. | |
| 1987 | Changed name to QPPD; |
| Conducted consultations of 200 people for "Quality Lifestyles"; | |
| Moved to new premises. | |
| 1988 | QPPD developed 2 other organizations: Queensland Advocacy Incorporated (including legal advocacy) and Community Resource Unit (including education and training for the service sector). |
| 1989-90 | Two year "Quality Lifestyles Project, including "Quality Lifestyles" conference; |
| produced 2 booklets: "The Statement" and "The Issues"; | |
| moved to new premises. | |
| 1991 | 3-day workshop run by Canadian parent and advocate, Bruce Uditsky; |
| Inclusive Education Network established; | |
| Recurrent funding to do advocacy. | |
| 1992-93 | Teleconferences and networking statewide; |
| "Access '93" conference, with emphasis on inclusive education. | |
| 1994 | "Inclusion in Life" activities. |
| 1995 | "Inclusive Lives" campaign; |
| subsequent backlash from Queensland Teachers' Union; | |
| students excluded from school which provoked national rallies and protests across the state; | |
| work continued to focus on defending justice and exposing exclusionary practices and segregation; | |
| Institutional reform was one of those activities |
QPPD
PO Box 470
Paddington
Queensland 4064
AUSTRALIA
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04/06/2001