Launch of Love and Kisses- taking action on the reproductive and sexual health and rights of people with disability

NSW Family Planning

I acknowledge the traditional owners of the land on which we meet.

Stella Young is a vivacious journalist, with a love of dinosaurs and Melbourne night life. She edits the ABC's Disability Portal Ramp Up. She uses a wheelchair. Her disability means that she often breaks bones, and her parents took her to hospital when she broke her leg whilst on a family holiday. Stella was about four years old. The doctor - whilst repairing the break - said to her parents "well, while she's under anaesthetic we may as well perform the hysterectomy." Luckily for Stella, her parents refused.

Two colleagues of mine have intellectual disability. I met with their adult daughter recently. She talked of their love and support as her parents, and how important it had been in her development. She also talked, with much sadness, of the story of one of her child-hood friends, who also had intellectual disability, and whose child had been removed from her at birth because it was judged that this woman could not "safely parent".

And finally my own story. I was waiting for a train at Central station about fifteen years ago. My wife and I both worked, and after the birth of our daughter had complicated child-care arrangements which meant that we both took her to work with us several days a week. On this day she was sitting on my back in the backpack I used to carry her in. A woman approached me and asked my name. When I queried why she wanted to know she said - "I want to report you to the authorities. People like you should not have the custody of a little child like that."

All of these stories illustrate the importance of the document being launched here today. I don't suggest that they all reflect general community attitudes. But they indicate a need for the rights of people with disabilities relating to marriage, family, parenthood and relationships to be reinforced and advanced. Family Planning NSW plays a key role in this area in our community, and is the obvious organisation to initiate such a document.

I have been honoured in the last decade to be one of the Australians involved in the drafting of the Convention on the Rights of People with Disabilities, the Disability Convention, or DisCo as I like to refer to it. Not only is it an easily remembered acronym, but it conjures images for me of people with disabilities moving into all parts of our community- even DisCo's. Although the colour of my hair suggests that Discos are not places which I have frequented for some time. But I mention the DisCo because of the important under-pinning it provides for the lives of people with disability in Australia. Australia has ratified the DisCo, and all of our Commonwealth and State governments have committed, through the National Disability Strategy, to implement the DisCo. In the case of NSW, the government has also implemented its own plan in this regard.

The document being launched today makes references to numerous parts of the DisCo. I won't take you to all of them- there are only so many human rights moves I can bust in any one speech. But let me dance you through Article 23 - Respect For Home And The Family.

It has five paragraphs. Paragraph 1 provides that governments shall take effective and appropriate measures to eliminate discrimination against people with disabilities in the areas with which we are dealing. The following things must be ensured -

• The right of people with disabilities to marry and found a family, on the basis that there is free and full consent;
• The right of people with disabilities to decide on the number and spacing of their children, and receive age-appropriate information on reproductive education;
• The right of people with disabilities to retain their fertility.

Paragraph 2 provides that governments shall ensure the rights and responsibilities of people with disabilities regarding guardianship, wardship, trusteeship, adoption. The best interests of the child must be paramount, and appropriate assistance must be provided in the performance of child-rearing responsibilities.

Paragraph 3 provides that children with disabilities must have equal rights to family life. Early and comprehensive information and support must be provided to children with disabilities.

Paragraph 4 provides that a child shall not be separated from their parents against their will, except where determined by competent authorities, legally reviewable, in the best interests of the child. In no case shall a child be separated from their parents on the basis of disability of the child or one or more of the parents.

Paragraph 5 provides that where the immediate family is unable to care for a child with disabilities, care should be provided in the wider family, or in the community in a family setting.

All of these paragraphs outline critically important rights which Australia must progressively realise. They - and the strategies, plans and laws flowing from them - provide the foundation for change on which this document builds. All of them move us - people with disabilities - further towards choice and control.

The document which we are here to launch today sets down the pathway which we should take towards that goal. To quote from the document "The subject of sexuality is generally a silent, ignored and invisible aspect of the lives of people with disability. It's a subject that Governments have largely failed to acknowledge, and in doing so make the necessary changes that ensure people with disability have the opportunity to participate in loving, safe and fulfilling sexual relationships."

I congratulate Family Planning NSW for laying out this pathway. You have made specific commitments about what you will do in this area, and laid out areas for action for Commonwealth and State Governments to follow. The pathway is a clear one, and people with disabilities are at the centre of that journey, as the DisCo also requires.

But the stories I told you at the beginning of my remarks stand in stark contrast to the words written in this document, and the plans, strategies, laws and conventions under-pinning it. As do the stories we heard when the Commission hosted the recent symposium conducted by the Stop The Violence Project, examining the issue of violence against women with disabilities. Some of you may have read the media coverage which that Symposium received. But for those who did not, can I draw just one more story from the opinion piece I wrote published in the Sydney Morning Herald-

Women with disability who live in institutions, boarding houses or group homes, are often victims of violence and sexual abuse. This is particularly true of women with psycho-social disability or mental illness. Often cigarettes are used as currency, and "a smoke for a poke" is reported as a regular occurrence. But the comment which revolted and saddened me most was that of a woman who responded to the researcher "Are you talking about rape. I've been raped heaps of times. You just have to get used to it."

So whilst I congratulate Family Planning NSW for developing this document, I have to say that the challenge is still before you. As it is still before Governments and organisations of and providing services to people with disabilities. That challenge is to make the strong words in the documents strong realities for people with disabilities, our families, and those - particularly in the medical and related professions - providing services to us.

Martin Luther King said “I have a dream that my children will grow up in a nation where they are not judged by the colour of their skin but by the content of their character”. If I can adapt that quote, I have a dream that my children will grow up in a nation where they are not judged by their disability, but by the content of their character. Sadly, it is a dream, because we don't yet live in that nation.

I congratulate Family Planning NSW for the preparation of this document, and encourage you to work with me, and others in the disability field, to make that dream a reality.

Thanks for the chance to speak with you today.