‘Burning Issues for People with Disabilities’
This is a transcript of a speech given by Elizabeth Hastings, (Manager, Justice and Social Responsibility, Uniting Church in Australia, Synod of Victoria) at the Annual General Meeting of Women With Disabilities Australia (WWDA), in Melbourne, September 12 1998. Elizabeth Hastings was also the former (and the first) Disability Discrimination Commissioner in Australia. Copyright Elizabeth Hastings 1998.
Good afternoon, and thank you for asking me to speak at your AGM. It’s clear from the reports and other information you have sent me that WWDA is an active and thoughtful organisation with a clear view of the rights of people with disabilities. I am therefore not going to go over old ground with you about the Disability Discrimination Act (DDA), the shortcomings of the current Federal Government in all matters to do with disability, and the problems now faced by the Human Rights and Equal Opportunity Commission and people with disabilities as the position of Disability Discrimination Commissioner remains unfilled and the rights remain largely unrepresented. I will tell you though, that I am very disappointed in the progress since I left that position.
Your letter of invitation to me to speak came after I had occasioned another flurry of interest in the sterilisation of minors and a few other things through a press release I sent out from the Justice and Social Responsibility Unit, so I thought I’d share with you today some of the unresolved issues for people with disabilities in general, and some for women with disabilities in particular.
These are a few of the issues that make me burn with anger – burning issues that have been smouldering away for years in our community without either being quenched or making such a conflagration that its light and heat has caused something to be done.
A Discrimination free world to live in
Of course, there are some fundamental systemic issues that require attention, and I shall attend briefly to these first: unlike the smouldering issues I will come to shortly, these are briskly burning and getting at least a little sustained attention from Government, advocacy groups and service providers. As you know, in the last few years there have been some advances made in protecting the rights of people with a disability to participate without discrimination in the social, cultural, economic, educational and political world we all share. Under various Acts people with a disability can expect, provided it would not be an unjustifiable hardship, to have access to all the goods, services and facilities our community offers. Employment, education, public transport, insurance, sport, recreation and access to premises: in all these areas people with a disability or their associates may legitimately make complaint and seek redress.
We may also legitimately hope for systemic and infrastructure change in compliance with the legislation. Such hope may be legitimate, but I am afraid it may also be foolish: vested interests such as the Australian Bus and Coach Association and the Property Council of Australia moved very quickly upon the change of government in 1996 to derail all processes that were on the brink of delivering an accessible community, and the tram has not yet been put back on the tracks.
If people with a disability do not have access to transport, accommodation, work, education and information we will continue to be dependent on community services and government payments. We will continue to experience ourselves as living on the edge of our society, as being of less worth than other human beings – and our society will continue to have that perception of us.
The right to live in a community free of discrimination is a burning issue for people with a disability, and advocacy for this should be a burning issue for all of us: to go on filling the gap through services rather than demanding it be filled through the elimination of discrimination (as stated in the Aims and Objects of the DDA) is to fail people with disabilities.
Now I shall return to those issues that smoulder but do not create enough heat and light for real action to be taken.
Conditions in Congregate Care
Naturally my mind goes first to the Kew Cottages that killed 9 young men a few years ago. One would have thought this is a large and deadly enough conflagration to result in immediate remedy – but only a few weeks ago as I was browsing through the Tendering pages of The Age I saw a call for tenders to install fire sprinklers at Kew – this now several years after the event. Subsequent inquiry revealed that the tenders have now had done to them whatever they do – and the sprinkler systems are due to go in soon.
This is my first burning issue: the appalling physical conditions under which so many people with a disability live and the slowness of the government, and of the community, to respond effectively – or at all. I am aware of the desperate situation people with a disability find themselves in when they need 24 hour care. The conditions for living are frequently unsafe, unsanitary and undignified, and the greater your need the more parsimonious the response.
Abuse in Institutions
According to at least fifteen reviews and inquiries into abuse of people living in institutions published during the five years I was Disability Discrimination Commissioner, conditions are also frequently brutal, abusive and exploitative. Staff are untrained in even basic matters of personal care, hygiene and the needs of people with certain disabilities, let alone how to prevent or respond to abuse: indeed it is common for casual weekend staff to be recruited from back-packers’ hostels.
A funding system that barely allows for getting people up and washed, dressed and fed, and then leaves them to their own devices when lack of devices is one of the major characteristics of the disability, is cruelly inadequate. Such is the nature of outcome focused so called ‘economic rationalism’: it is cruel to the human spirit and inadequate to human need.
In a paper on abuse in institutions I was preparing as I left the Human Rights and Equal Opportunity Commission, I referred to the “abuse of meaninglessness”: people with various cognitive and behavioural disabilities herded into a Day room, or a concrete enclosure, for twelve hours a day with nothing to look forward to but the next meal (if such it could be called). Our prisoners get better conditions and daily routines than do our innocent but challenging people with a disability. The St Kilda centre for Creative Ministries recently conducted a program of 12 crafts, movement and drama classes in a Special Accommodation House – so great was the response from the residents that the 12 expanded to 47 classes, and resulted in the production of a booklet called ‘101 Things to do in a Special Accommodation’ which I launched last week. The problem for the manager, however, continues to be lack of resources for activities.
If the relatively independent people in a Special Accommodation House have such a hunger for activities the meaningless and tedium of existence for those with more severe disabilities in congregate care is unimaginable.
Where physical, sexual or psychological abuse does occur (perpetrated either by staff or by another resident) there are rarely any mechanisms for reporting or response. A whistleblower is far more likely to be sacked or punished than is the perpetrator, and almost never anything is done for the person who was abused. The police are reluctant to get involved, and in any case are rarely called by the manager of the facility who prefers, naturally, to handle the matter in-house. Equality under and equal protection of the law is nothing more than a fairy tale for people with cognitive and behavioural disabilities.
Advocacy for our brothers and sisters who are relegated to congregate care is a burning need – we must advocate for sufficient funds to give people a life worth living; protection from abuse and exploitation; and real, experienced equality under the law.
Care for the whole person
When you are diagnosed as having a disability it appears that the world assumes that’s your lot, your full allocation. People with a disability living in institutions rarely receive medical attention or adequate dental care. It is known that if you have multiple disabilities, including intellectual disability, all your teeth will probably fall out through lack of care, poor food and speedy, expedient but barely effective feeding practices. You may also slowly starve to death. Certainly you will not enjoy your meals. Once your teeth have fallen out you will be fed mush – almost never will you be taken to the dentist.
If you are a woman in congregate care you will almost certainly not be given regular pap smears or, as you get older, mammograms. Men will not be checked for prostate cancer. No-one will have their hearts monitored. In the 1996-97 Annual Report of the New South Wales equivalent of the Guardianship Board, Roger West tells the story of a woman who was diagnosed as having an intellectual disability. As the years went by she stopped walking and took to a wheelchair. In time she stopped moving around at all and gave up speaking. She would sit in a corner all day, bent over and making moaning noises. Everybody thought: ‘Oh that’s just her, she has an intellectual disability, she’s been acting like that for a while’. Surely if any of us took to sitting in a corner and moaning there would be some curiosity displayed as to why we were behaving so oddly? Eventually, for some reason not connected with her, a doctor examined all the residents: this woman was found to have advanced and extremely painful liver cancer.
Having even a life long disability does not prevent other things happening to us: would that nature were so even handed!
Within this category could also come the matter of multiple disabilities, especially those that cross the artificial boundaries that we set up for administrative expedience. The person with a physical disability, for example, who becomes an alcohol or drug abuser; the person with an intellectual disability who develops a psychosis; the deaf person who needs psychological counselling for relationship or other problems. Our systems are not set up to respond to the wholeness of human life and experience but demand we have one thing go wrong at a time: take it from me, life’s not like that!
Advocacy for proper attention to the whole person as someone with a multitude of attributes, characteristics, idiosyncrasies – a personality and a real human body, for heaven’s sake! – is a burning issue for our sisters and brothers with cognitive, physical or multiple disabilities.
Sterilisation of minors
While the Australian Government is reducing the accessibility of remedy for breaches of laws for elimination of discrimination on the basis of disability, the community at large is hell bent on eliminating us, people with a disability.
First there is the continuing practice, known of and admitted by the Minister for Health, of the illegal sterilisation of minors, for reasons other than life saving surgery or treatment of last resort. I released a report on this late last year, as pretty much my last act as Commissioner.
In 1992, the High Court in re Marion found it illegal for the decision to sterilise a girl under the age of 18 to be made other than in a court – later the High Court specified the Family Court as a proper court for this purpose. In the following 5 years there were 17 authorisations in the Family Court, and 1045 sterilisation procedures in Australia on girls and young women under the age of 18, some as young as nine, eleven or fourteen. The matter first came before me in the early months of my appointment – though I have, like all people who grow up with and among people who have a disability, always known it happens.
Whenever people who have disabilities engage in serious discussion of our experience, this is a part of it: this knowledge that others had control over decisions about our reproduction; over our ordinary movement into adulthood and sexuality; into womanhood, menstruation, pregnancy and motherhood. The control was partly material, as in sterilisation or other treatments which affected our physical being, and partly emotional or psychological. This latter affected our hopes and aspirations, our expectations of ourselves and of others in relationship with us. The knowledge that people we knew could be sterilised (or may die) over the school holidays was built into our dreams and plans, our self image and self esteem.
There is more to Human Rights than a technical or mechanical protection of life, liberty and integrity of person.
Human rights, the protection of our rights, and the experience of our rights being protected because we are as human as all people, as valued as all people, goes to the heart of being a human being with the rights and responsibilities of human beings in our society. A world in which a government Minister cannot be bothered to investigate possible illegal medical assault on nearly 200 of its citizens (this is the number Mr. Wooldridge estimates could be illegal assaults), in which those with no authority feel free to make decisions which are blatantly against the law and to carry out serious and irreversible procedures on those with little or no capacity to give or withhold consent, is a world in which people with disabilities can have no certainty or confidence about their human being or their future.
The shadows of withdrawal of treatment, euthanasia, culling in the womb, elimination in the genome are not so far behind the fact of illegal assault on bodily integrity for the convenience or emotional comfort of those who may not under law make that decision.
This is not the place for an extended discussion of this matter, nor for the question of whether a person with an intellectual disability should have children – the point I am making here is that sterilisation of children is happening illegally every day in Australia. The doctors are not being investigated or prosecuted, the parents are not being given alternative solutions to the problems they fear, and the girls are not receiving the equal protection of the law to which they are entitled. The procedure is being used on girls as young as nine for three main purposes: prevention of pregnancy; avoidance of the need to manage menstruation; and eugenics. All of these are in contravention of Human Rights and the Convention on the Rights of the Child.
I have already spoken at a Medico-Legal Conference conducted in Melbourne by the Family Court of Australia, and have been invited to address a similar international conference next month. I also included this matter in my recent press release.
With both report and press release, the predictable response of the media was two-fold. There was a gasp of shock and flurry of outrage that such sterilisations were occurring; then there was an uninformed and prejudiced insistence that the rights of the parents to peace of mind, and of the unborn children of “mentally retarded” mothers who would not be able to look after them to remain unborn, took precedence over any rights the young women themselves may have. I remember particularly one very unpleasant interview with two radio hosts who insisted that I had no right to interfere in the lives of people who were already suffering enough, nor to impose such irrelevancies as High Court decisions or United Nations Declarations of Human Rights on the hapless mums and dads of Australia.
Over a long period the Human Rights and Equal Opportunity Commission has sought to ensure that people with an intellectual disability are not subjected inappropriately to sterilising surgical procedures.
In Marion’s Case, the High Court held that court or tribunal authority is required before any child can lawfully be sterilised, unless the sterilisation occurs as a by-product of surgery carried out to treat some malfunction or disease. That authorisation may be given only if sterilisation is determined to be in the child’s best interests after alternative and less invasive procedures have all failed or it is certain that no other procedure or treatment will work. The Commission appeared in this case, presenting the human rights aspects that were thought essential in the consideration of such applications.
In 1994 and 1995 I instructed the legal staff of the Commission to seek leave to appear in the several stages of a case known as P v P as it worked its way through a single, then full, bench of the Family Court, the federal Court and on appeal, to the High Court. At all times my intention was not to represent or advocate for either party, but to ensure that all relevant matters were put before the Court.
In a submission invited by the Family Court, we detailed those criteria which would never, alone or in combination, be themselves sufficient basis for a decision that sterilisation was in the best interest of the child. These “binding proscriptive criteria” included sterilisation: for eugenic or public welfare reasons; to prevent the consequences of sexual abuse; for contraceptive purposes; to remedy hygiene or other usual and practical problems of menstruation; for the purpose of easing the burden on persons responsible for caring for the child; or if the operation is not the last resort.
We also outlined factors which, in our opinion, the Court should have regard to in the exercise of discretion in matters of this type. These guidelines included: the physical, mental or psychological health and capacity of the child with and without sterilisation; the severity of the problems to be experienced by the child in the absence of sterilisation; the capacity of the child to give present or future consent given her age; and the age of the child (in view of the fact that sterilisation must be a treatment of last resort in the sense that no alternative and less drastic treatment would be appropriate and effective, it should not ordinarily be justified before the child has commenced menstruation).
Further considerations included: whether present and future alternative remedies (including counselling, contraception, pharmacological alternatives, training, supportive nursing and care) had been attempted or considered; the views of the child; the extent of intellectual impairment of the child; potential capacity of the child to care for an infant and be involved in an ongoing human relationship; detrimental consequences of the child continuing to menstruate; the views of the parents; the effect of sterilisation on the child’s long term physical health, mental health, emotional wellbeing, and important relationships; the burden on those responsible for caring for the child insofar as that may affect the overall welfare of the child; whether the operation is substantially therapeutic or not; is it the least invasive procedure possible; and would the same procedure be recommended for saving the same problem of an intellectually competent child.
These items were offered in the light of recognition that sterilisation will always be in the best interests of the child if it is necessary or incidental to conventional medical treatment (including surgery) for the preservation of life, prevention of grave illness, or correction of some serious malfunction.
I think it should be clear from these considerations that neither the Human Rights and Equal Opportunity Commission, nor I, nor indeed any who work with people who have an intellectual disability, take the position that sterilisation should never occur. There are situations where sterilisation may be the appropriate solution. The position we do take is that the sterilisation be in fact the appropriate response to the problems being experienced, that it be the procedure of last resort, and that the decision be made lawfully and with proper consideration of the human rights of the child under discussion.
The High Court also called for federal legislative reform to provide for a decision making process that would be more appropriate and accessible and less expensive, particularly for parents, than the adversarial court process.
In 1996 a guide to decision making about special medical procedures was published by the Family Court in Queensland. This gave clear guidance to the process of seeking court authorisation for such procedures, including sterilisation, and to the considerations that should be taken into account, and was the basis for a similar set of guidelines launched in Victoria in March.
The illegal use of irrevocable surgical intervention for reasons other than life threatening disease is, and has been for a very long time, a burning issue for people with a disability.
What can Women With Disabilities Australia (WWDA) do about this? I think we must above all keep the matter alive. We need to find out the mechanisms necessary to report cases of illegal sterilisation to the Federal Police, promote at all times the Family Court Guidelines, lobby Community Services Departments for adequate funding and programs to give anxious and stressed parents real access to alternative methods of menstrual and pregnancy management. One thing we can be absolutely sure of is that sterilisation of one’s daughter will not avoid the ordinary difficulties of adolescence that all parents must face with their children, with or without disabilities. At least one Scandanavian country (Sweden, I think) has outlawed all sterilisation procedures that are not actually life saving – and that is extremely rare in young women and girls.
We can add to sterilisation the new fantasy of eliminating genetic disabilities, and along with these a whole raft of human problems, through ante-natal testing and abortion. People with a disability must now establish their worth as human beings in the face of a general assumption that people like us are better aborted. Parents of children with disabilities, whether genetic or not, are now being accused of selfishness or stupidity or criminality for not having got rid of the child through abortion. The obvious desirability ridding the world of people with Down Syndrome, spina bifida, muscular dystrophy and other disabilities is being announced on radio and television as though these potential abortees were not part of the audience. Statements are being made about the quality of our lives by people who have never considered asking us. Expectant parents are being told of their defective foetus and given information about abortion in an environment where nearly every day there is social comment made about the desirability of eliminating disability from your family, from our community – they are not introduced to families that are living happily and successfully with the disability, they are not told that many parents see their child with a disability as the light, the sunshine, of their lives.
This fantasy about eliminating disappointment and difficulty through abortion and genetic manipulation is very dangerous indeed for human community and wholeness. Its implications for government control (for example: I believe that in France if you knowingly give birth to a baby with a genetic disability you will not be eligible for any government support or services for that child) are reminiscent of 1984 and other not so fantastic fantasies. This is not simply a public health matter, it is about bottom line economics and fantasies of perfection. It is a part of our human endeavour to avoid suffering, disappointment, constraint and effort. It is foolishness: there is no guarantee that a baby may not become disabled through the stresses of birth, the exigencies of early life or later illness or accident. Neither is there any guarantee that this, as near to perfect as we could get child, will not grow up to abuse drugs, or people, or otherwise cause heartbreak for the family. We cannot and should not attempt to eliminate this ordinary part of human being, these ordinary human experiences. We should not easily or thoughtlessly go along with the idea that controlling this part of our God given creation is good for humanity.
It is a burning issue for people with a disability and I hope will kindle a fire in your advocacy activities also. I recently published an opinion piece on this in the Financial Review Legal Affairs pages and hope we can make people a bit more thoughtful about inconvenience, disappointment and negative assumptions as a basis for this decision.
These matters, largely affecting people with an intellectual disability and their families, have as I said earlier, been around for a long time. Small parent, consumer or community based groups take the matters up from time to time, usually earning for themselves some denigrating title. One such is John Jacobson, who may be well known to those of you who live in Sydney. John has fought the battle of conditions in institutions, illegal sterilisation, abuse and exploitation for many years and deserves a medal for persistence in the face of indifference and inertia.
Spiritual life and development
The spiritual life and development of people with a disability is another burning issue. In May I attended a Conference on Spirituality and Disability in Adelaide at which there were about 200 people with disabilities, all of whom were very serious about their spiritual life and all of whom had felt abused, misrepresented or excluded by mainstream religions at some time. In Victoria there used to be eleven chaplains for people with mental illness and psychiatric disability: this has been reduced to one, and that one is precarious. Government is reluctant, as I have said, to provide more than the absolute basics of food, shelter and clothing: surely these members of the body of Christ, these people created also in the image of God, should be cared for in their souls as well as their bodies. I am encouraging the Uniting Church to fight for this. I think it is also important for an advocacy group such as Women With Disabilities Australia (WWDA) to acknowledge the importance of the deeper life for people with disabilities, as well as the basics.
There are three more hot issues I want to mention before getting off my hobby horse: one is the dreaded bottom line which is drawn far too low as I suggested at the beginning, and others are the attrition of rights protection mechanisms, and the need for assisted communication for people with severe and multiple disabilities.
The bottom line
Everybody knows the bottom line is too low, of course, but we must take this up at every opportunity. People with a disability have been demonstrated over and over again to be the poorest in our community. The costs of disability are borne over and above the ordinary costs of living, and are by no means insignificant. Transport, medication, accommodation – just about everything costs more. For those living in institutions there are fees and charges taken out of their Disability support Pension that allow very little left over for personal pleasure. Funding, as I have said, assures only the barest, meanest minimum of service for people who have little else to look forward to – this enforced “bottom line” bleakness for so many is a burning issue if we hope to become a humane society.
Attrition of Human Rights protection
In the last two years there has been significant attrition of rights protection mechanisms and of advocacy for people with a disability. The Human Rights and Equal Opportunity Commission has, as you know, had 43% of its funding removed over the last 18 months; the Disability Discrimination Commissioner has not been replaced and new legislation will remove the role altogether; hearings will move to the Federal Court which will have a negative impact on those least able to fight their own battles; the Guardianship Board in Victoria has been rolled into the “mega-tribunal’ along with the AAT and thus people with a disability have lost the avenue of appeal from the Guardianship Board on the merits of the case; information and advocacy services have been defunded. People with a disability continue to be significantly over represented in police lock ups, courts and prisons, and in Centrelink queues, and grossly under represented in secondary and higher education and employment.
And finally, there is the matter of communication for those whose disability has deprived them of their own voice. I am speaking here of those who have such impaired speech, and such difficulty with more coordination that they are silenced. These are the “harijan” or “dalits” of the disability world. The treatment they receive, the future they can look forward to, in institutions and in the world, is unimaginably bleak. Anybody who has read Annie MacDonalds biography will be aware of the danger of making assumptions about the intellect, the humanity of people with such disabilities. I have recently read “Speechless”, a book about assisted communication written by Rosemary Crossley. Rosemary is very highly thought of in the USA, but ridiculed and ignored here. A reading of her book should give anybody pause in their confident assertions about the lack of ability of those whose disability renders them “speechless”. The right to have access to whatever is necessary to allow the speechless to speak should be a burning issue for all of us in the name of humanity.
These are my burning issues. I hope they will fire you up too, and be part of your advocacy and fight as you go into your next year.