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1996 Kenneth Jenkins Oration

Disability Rights

1996 Kenneth Jenkins
Oration

Speech by Sir Ronald Wilson

President, Human Rights and Equal Opportunity Commission

ACROD National Convention, Perth

15 November 1996
Sir Ron Wilson

I
am honoured and delighted to be here to deliver the Kenneth Jenkins Oration.
My participation continues the involvement of members of the Human Rights
and Equal Opportunity Commission with this event.

The
third Oration was delivered in 1981 by Elizabeth Hastings, who is now
my colleague as the Disability Discrimination Commissioner.

Her
address emphasised ideas which may then have been perceived as radical
and surprising: starting with the proposition that people with a disability
really do have the same human rights as all other people; and that this
includes rights to independence, and equal respect, and self determination
in matters both small and large.

These
ideas have gained much greater currency than they had fifteen years ago.
They may indeed now be regarded as commonplace. But a moment's reflection
by anyone connected with people with a disability should be enough to
remind us that for many people with a disability these goals of independence
and wholehearted respect are still at best an incomplete reality.

These
goals were prominent among the aims of the International Year of Disabled
Persons. The symbolic focus provided by that International Year provided
the catalyst for an unprecedented amount of activity in Australia, at
grassroots, public policy and legislative levels, directed to improved
recognition and achievement of human rights for people with a disability.

The
work of Kenneth Jenkins, which this Oration commemorates, demonstrated
a breadth of vision which has inspired many thousands of people around
the world to engage in sustained pratical commitment to the interests
of people with a disability. He was a roving international ambassador
of enormous influence. Kenneth Jenkins served as President of Rehabilitation
International, Chairman of a World Commission on Rehabilitation and was
invited to speak in no fewer than sixty three countries to consult and
advise, confer and speak, on issues affecting people with a disability.

The
importance of international standards on human rights as a basis for action
in Australia to improve the position of people with a disability was the
major theme of the 1989 Kenneth Jenkins Oration, delivered by Brian Burdekin
as Human Rights Commissioner.

In
some ways, Brian Burdekin has followed in the footsteps of Kenneth Jenkins.
He now roves the world as the Special Adviser on National Human Rights
Institutions with the UN High Commissioner for Human Rights. Like Jenkins,
Burdekin is concerned with translating the high-minded phrases of international
treaties into practical measures to improve the protection of and respect
for human rights for ordinary human beings.

The
choice for Australia

I
would be remiss if I did not pause to comment on the deeply disturbing
and distressing events in recent public and political debate in this country.
The potential outcomes of that debate are so far-reaching as to confront
every thoughtful Australian with a stark choice : What kind of Australia
do you want to leave to your children and to the world community ? And
there are none better placed to recognise what is in issue in that choice
and who know the importance of making the right response than those who
have a commitment to advance the wellbeing of people with a disability.

You
will all know what I am talking about : the flirtation in recent months
- in some sections of the community and of the media - with a vision of
Australia as a less tolerant, less inclusive and less just society; a
closure of minds and hearts under the colour of openness of debate; what
threatens to be a new political correctness being stridently asserted
in the name of challenging alleged "politically correct" constraints
on public policy and free speech.

Now
- after weeks that have caused pain, fear and insecurity to many, we have
seen a recoiling from this. Our leaders in Federal Parliament have reaffirmed
commitment to tolerance, inclusion and justice as fundamental constituting
principles of Australian society. Many State leaders have done the same,
and in some cases done it considerably earlier.

The
Prime Minister has repudiated ill informed calls for retreat into isolationism,
abandonment of foreign aid, and departure from membership of the United
Nations.

There
have also been statements recognising, though less extensively than might
have been hoped, that the indigenous people of this country have been
subject to a long history of injustice and that their present disadvantaged
position must be addressed with realism, determination and, if necessary,
with sacrifice.

This
is not to say, however, that we can now be comfortable and relaxed, believing
that enough has been done to put the genies of intolerance and indeed
of hatred back in their bottles. No amount of political leadership, necessary
though that leadership is, can absolve the rest of us from positive action
for tolerance and inclusion and against prejudice within our own communities,
organisations and workplaces.

You
may be wondering what this has to do with people with a disability.

One
answer is the obvious one that people with a disability are not a distinct
class in Australian society. They are found among every sector of the
community, including indigenous people and within the full range of Australia's
ethnic diversity. For these people, there is no immunity from the disadvantages
and injustices that have occurred and do occur in our nation on racial
and ethnic grounds.

More
importantly, the choices presented in the current debate about what sort
of society we wish to be are immensely important to all people with a
disability. Are we an inclusive society that values the participation
of all its members? Are we committed to justice and the redress of injustice
and disadvantage? Are we committed to human dignity and equal respect
for all members of our society? Clearly, while these bells toll for all
of us, they toll for people with a disability as much, if not more than,
most.

Underlying
these thoughts is the truth affirmed in the Universal Declaration of Human
Rights in 1948 and reaffirmed in the World Conference on Human Rights
in 1993 that human rights are universal, indivisible and interdependent.
They find their unity in the recognition of that inherent dignity which
belongs to every human being and from which is derived the equal and inalienable
rights of all members of the human family.

People
with an intellectual disability as parents: A new order of debate

There
is a current example of what I mean about the current level of public
discussion in Australia which is more directly relevant to people with
a disability.

There
have been a number of recent incidents where it is alleged that the death
of a child has resulted from the inability of a parent with an intellectual
disability to provide adequate care. In response to these incidents, there
have been calls made in the news media for all people with an intellectual
disability to be sterilised on reaching reproductive age, or have any
children taken away for adoption or into State care.

As
simple as that. Never mind that the last significant proponents of such
ideas found themselves in the dock at the Nuremberg trials. A "final
solution" indeed, with no need to consider difficult issues of ability
to deal with pregnancy or the responsibilities of parenthood; no need
to consider "politically correct" ideas like a right to physical
integrity which might require alternatives to be explored before taking
such a step without a person's free consent; no need to spend money on
supporting families who need it when it could go towards tax cuts or election
time bribes for we "normal" people. And how simple to have some
other group, not like us, to blame. No need to spend time or moral effort
or money on other causes of child abuse or neglect among "normal"
people - domestic violence, alcohol abuse, family breakdown, the resources
and supports available to parents. Just sterilise "them" all
or take the children away.

The
human rights principles incorporated in the legislation which the Commission
administers, and which Australia has committed itself to respect, protect
and promote, do not support or permit such a simplistic, heartless solution.
Certainly they require protection of children from abuse and neglect.
But they also require respect for the physical integrity of the person.
They require equal protection of the law and freedom from discrimination.
And (particularly in the Convention on the Rights of the Child but also
in the International Covenant on Civil and Political Rights) they require
respect for and protection of the family.

Recently
the Commission was asked to intervene in Tribunal proceedings in which
parents who both had an intellectual disability were attempting to change
official decisions which had their two little boys living apart from their
parents and from each other. The authorities concerned had decided that
the parents were not able to care adequately for their children. We decided
not to intervene because we believed the human rights arguments were already
being put before the Tribunal adequately without our involvement. But
I want to say more about this case today.

This
case concerned a decision under ordinary child welfare legislation, not
part of a separate or deliberately discriminatory program of removal of
children. And I am not denying that in the circumstances it may have been
in the best interests of the children concerned. But I wonder whether
some of the evidence relied on to show that these parents could not care
for their children would have been used the same way to keep parents without
a disability from their children.

The
young father was criticised, for example, in a report from a social worker,
because he preferred to use disposable nappies rather than risk hurting
the child with a safety pin. Well, does everyone else, "normal people",
use only cloth nappies and safety pins on pain of losing care of their
children?

The
young mother was criticised because, when her baby's nappy needed changing
during one of her rare access visits to the foster mother to whom her
baby had been given, she regarded it as the foster mother's responsibility
to deal with the nappy. Well, how would a "normal" parent feel
and what would they do in the same situation?

Perhaps
it is too simple a question to ask, but if it was possible to find the
resources to take the children away and separate them even from each other,
why was it not possible to find resources instead to support the parents
in caring for their own children and keep the two little brothers together?

A community
which values equality and inclusion, or one which really values its professed
commitment to the family as fundamental to society, would be thinking
about this type of question and doing something about it - even if at
the expense of funding for other things that we obviously do value - like
elite sports. A community content with simplistic notions of "us"
and "them" will not want to think about this sort of situation
or do anything practical to change it. What sort of Australia do we want
to be, on this test?

Sterilisation

The
Commission has intervened in a number of cases, including in the High
Court, to argue for the application of relevant human rights principles
regarding decisions to authorise various surgical operations described
as sterilisation of girls and young women with various degrees of intellectual
disability.

Our
main point in these interventions has not been to argue that such operations
should or should not occur in a particular case. But we have argued that
such an operation requires compelling justification, including careful
examination of available alternatives, and that a procedure should be
established to ensure that this justification is present and this examination
of alternatives occurs.

To
that end we have supported the argument that the courts should be involved
in authorising such operations. But it is now clear enough that the purposes
we were seeking to advance by this have not been achieved.

The
courts have not felt themselves able to set down clear guidelines, as
we had argued they should, for the approval or the disallowance of such
operations. Yet they have accepted the view that court approval is always
required.

What
has been the result? Well, Medicare payment statistics alone appear to
indicate that the vast majority of such operations do not go anywhere
near a court for approval, whatever the courts now say about their approval
being required.

Some
courts, to which proposed operations have been brought for approval, have
admitted very frankly that they do not know why they are involved at all.
Clearly, some parents seeking approval to proceed with such operations,
not to speak of those parents who do not seek approval, have had the same
view of the involvement of the legal system.

In
my view there is considerable room for sympathy with the minority view
expressed by Justice, now Chief Justice, Brennan when these issues were
raised before the High Court: if an operation was genuinely therapeutic
in its purpose, and a valid consent was given by or on behalf of the person,
why should court approval be required? If the operation was not for the
purpose of therapeutic benefit to the person, how could a court have jurisdiction,
power or right to approve it?

It
may be that we have been looking to the courts to perform roles of public
choice which in truth require action by our Parliaments - whose business
it is to make rather than state the law - and the executive government,
which has the ability to dedicate money and human resources to social
problems in a way that the courts do not.

The
Commission is hoping to have discussions with the Attorney-General about
these issues in the near future; about how to achieve a regime of principled
decision making which is applied rather than largely ignored, and how
to combine this with an allocation of resources which offers families
more options and more support in pursuing them, rather than the law being
seen only as offering a procedural ritual which is costly in time, money
and grief but which does not alter outcomes significantly for the better.

It
is, I hope, no disrespect to the Attorney to say that government may find
it difficult to pursue these inevitably controversial issues, unless the
community expresses support for such an undertaking and is prepared to
support, even demand, the allocation of the necessary resources.

The
place of disability on the public agenda

This
bring me to concerns about the place, or lack of place, held by disability
issues in public debate in Australia.

In
debates about racism and racial tolerance, the arguments of economic and
political self interest in our relations with our neighbours are now being
raised alongside those of human rights and human decency. Salvation of
the nation's purse, as well as its soul, seems to require a rededication
to tolerance and decency, even though economic insecurity appears to be
one of the factors which has fanned intolerance and fear.

It
is far less obvious that perceived self interest will, of itself, pull
this nation in the direction of inclusion, equality and respect for people
with a disability.

Despite
much excellent work both by community organisations and by government
agencies, with themes like "Focus on Ability", the usual perception
of people with a disability in public and political discussion - where
there is any perception at all - appears to be as recipients or potential
recipients of services, as sources of costly needs; not as contributors
or potential contributors of skills and abilities, as equal participants
in the economic, social, cultural and political life of our nation.

It
often appears that disability issues struggle to get on the public agenda
at all. Let me quote from a speech given by Commissioner Hastings, in
response to writings by former Minister Gary Johns blaming the previous
Federal Government's defeat on an allegedly excessive commitment to the
interests of women and minorities - he having included disability in his
list of minorities:

    "I
    must say that I really felt people with a disability had arrived in
    public debate in Australia when we made it onto Gary Johns' list of
    minorities receiving too much attention. I wish him a long and happy
    retirement from public life."

The
Human Rights and Equal Opportunity Commission and disability issues

Often
overlooked or marginalised, disability is nonetheless an inherent part
of the human experience and of the diversity of Australia's people.

The
Human Rights and Equal Opportunity Commission has tried to ensure that
its own work reflects this reality by ensuring that disability issues
are at least firmly on its own human rights agenda.

In
his 1989 Oration, Brian Burdekin outlined what he called the Commission's
"Program for Action on Disability".

The
major elements of that program were to be a discussion paper, consultation
process and report on human rights and physical and intellectual disability,
and the launch of a national inquiry on human rights and mental illness.

The
mental illness inquiry was a massive undertaking for a relatively small
organisation, and the Commission was even smaller then than it is now.
The decision to conduct such an inquiry focussing on one area of disability,
and separately from other processes of policy and public activity on disability,
is not one that we would necessarily take now. That is not a criticism
of the decisions made at the time. Connections between issues affecting
people with different categories of disabilities have developed since
1989 not only in the Commission's own approach but in the structure and
orientation of community and representative organisations, and in legislative,
program and service delivery arrangements.

Commissioner
Burdekin's announcement in his 1989 Oration contemplated a final report,
based on consultations, submissions and research, which would provide
government with a comprehensive picture of legislative and programmatic
steps required to comply with human rights obligations in relation to
people with a disability.

The
Commission issued a draft report in 1991, on the basis of the "Program
for Action", which was provided to the Federal Government and to
a limited range of organisations including ACROD. We did not, however,
go on to prepare and publicise a final report with recommendations for
action by government across the full range of disability and human rights.

One
reason was that it became clear that to do this in any meaningful way
would be beyond the resources of a Commission already committed not only
to a national inquiry on human rights and mental illness but also to a
national inquiry on racist violence.

A more
fundamental reason was a decision to concentrate resources on contributing
to the development and passage of the Disability Discrimination Act. The
Commission saw this as an opportunity for achieving a more effective means
for people with a disability to achieve change themselves, rather than
the Commission simply serving recommendations up to government and appealing
for them to be implemented.

National
Inquiries

Do
not misunderstand me : I am the last person to disparage the national
inquiry approach. It is a technique that has been used to good effect
over the decade of the Commission's existence. I need only mention the
Homeless Children Inquiry, the Racist Violence Inquiry and the Inquiry
into Mental Illness to prove the point. The most recent is the current
Inquiry into the Compulsory Removal of Aboriginal and Torres Strait Islander
Children from their Families. For many people appearing before that Inquiry,
it has provided a forum where no other existed, to express their grief
and their grievance, and give the rest of the community some sense of
the wrongs that have been done.

Of
course, we expect that the Inquiry will achieve more than this, both in
terms of redress and in terms of improved support for families and other
measures.

The
Disability Discrimination Act and comparable laws

To
return to my main story: The development and passage of the Disability
Discrimination Act offered the opportunity at a national level to take
many issues of concern to people with a disability out of the ordinary
run of politics where benefits are begged or bargained for, out of the
"welfare" category into the area of rights recognised by statute.
"L - A - W, law", as was once said by a former Prime Minister
in another context.

Like
all such legislation the DDA was the product of political processes of
negotiation and compromise. But I think it is striking for the range of
areas of life it deals with and for the limited extent of any restrictions
it places on the obligation to eliminate discrimination.

The
DDA was not, of course, the first Australian legislation in this area.
Most States and Territories included disability discrimination in their
anti-discrimination legislation before the passage of the DDA, in some
cases many years before. Only Tasmania still lacks its own local legislative
protection against disability discrimination, and State legislation may
soon be in place there also. Apart from the symbolic effect of national
legislation specifically about disability discrimination, the specific
importance of the DDA is found in those matters involving the Commonwealth
itself; those where other legislation is less adequate; and those where
national processes or national leadership are important in resolving issues
in a way that promotes equality among all Australians.

Some
people have compared the DDA unfavourably to the United States' Americans
with Disabilities Act as a less ambitious charter of rights. Certainly,
the American Act has a level of detailed specification of rights and obligations
which the DDA will lack, at least until the Disability Standards for which
it provides are brought into effect. (I will say something more about
Standards in a moment.) But in most other respects, where the Australian
and United States laws are different it is the DDA which is broader in
at least its potential application.

I am
not saying that the DDA or any other discrimination law provides a comprehensive
charter of human rights, still less that it guarantees the availability
of the resources required for rights to be enjoyed in practice. But it
does provide a strong and legally enforceable statement of public policy
for the elimination of disability discrimination.

Discrimination
laws are not just for show

George
Bush put his signature to the Americans with Disabilities Act at a ceremony
on the White House lawns before 3000 guests, most of them people with
a disability. In doing so, he compared the barriers presented by discrimination
against people with a disability to the Berlin Wall, which had fallen
the previous year. He said: "And now I sign legislation which takes
a sledgehammer to another wall, one which has, for too many generations,
separated Americans with disabilities from the freedom they could glimpse,
but not grasp. Once again, we rejoice as this barrier falls, proclaiming
together we will not accept, we will not excuse, we will not tolerate
discrimination in America".

That
sort of stirring rhetoric is not perhaps a style that we feel comfortable
in using in Australia. But perhaps we can do with a bit of stirring!!

Discrimination
legislation is not an end or achievement in itself. On the part of the
government it is a commitment to action, not a Boy Scout badge of virtue.
On the part of people with a disability and organisations which represent
and serve them, its provisions should be seen as tools to be used, not
trophies to be kept in a locked glass case in case they get scratched
when they are taken out. Human rights are there to be exercised and enjoyed.

Government
commitment to the Disability Discrimination Act

As
I have said, the adoption of the DDA represented a strong public policy
commitment by the Commonwealth Government to equality for people with
a disability.

I say
this even though a number of the exemptions provided for in the Act concern
matters of particular importance to the Commonwealth Government itself.

Migration

In
particular, many of you would be aware of the exemption for actions "in
relation to" the administration of the Migration Act. The Commission
has consistently criticised this exemption as broader than can be justified
by any legitimate public policy consideration. Surely some more narrowly
tailored provision is possible which recognises the right of Government
to control entry to Australia, and to weigh costs and benefits to the
Australian community, without giving a blank cheque to discrimination.
If, as happened recently, both Houses of Parliament can overwhelmingly
reaffirm support for an immigration policy which is non discriminatory
on grounds of race, is it too much to hope that discrimination on grounds
of disability might at least be subject to some scrutiny?

Policy
response to the Disability Discrimination Act: The Commonwealth disability
strategy and action plans

The
Commonwealth Disability Strategy, adopted by Cabinet decision in late
1994, was in part structured as a response to international human rights
agendas, as set out in the United Nations Standard Rules for the Equalisation
of Opportunities for Disabled Persons. But it is also presented as a policy
response to the Commonwealth's own legislation, the DDA.

In
part the Commonwealth Disability Strategy is a collection of specific
program measures. But it is also intended as a recasting of government's
approach to disability; that as people with a disability are found throughout
the community and are indeed entitled to be full citizens and participants
in our society, disability issues should be the concern not just of specialised
agencies or welfare departments but of all areas of government.

In
saying this, I am not disparaging the importance of specialised services
addressing specialised needs. The point is that no agency which provides
services to the public can be heard to say that its client group does
not include people with a disability.

Given
the purpose of the Commonwealth Disability Strategy as a policy response
to the DDA, a key feature of the Strategy from the Commission's point
of view is the decision that Commonwealth departments and agencies will
lodge Action Plans under the DDA - their own plans on how to ensure that
the Commonwealth's own agencies comply with the Commonwealth's own legislation.

The
Strategy indicated that this would occur by 1997.

To
date only one such plan has been lodged by a Commonwealth Department.
This contrasts with a steady stream of Action Plans from education providers
and local government authorities, and with plans beginning to come in
from State government and private business enterprises.

This
is not said in any spirit of self righteous condemnation. HREOC itself
is only now finalising its own Action Plan. The Commission will be consulting
with departments over the next few months to see if any further assistance
or clarification we or others can provide would assist in getting results.

A development
which does I think deserve sharper criticism is that at least one major
department is seeking to be exempted from the commitment to submit an
action plan.

As
President of a small agency, I understand the view that time should be
spent achieving substantive results rather than filling out endless reports
for their own sake. But it is accountability for results, and commitment
to achieving them, that concerns me, if even making a plan is regarded
as too hard and even without having taken up the Commission's invitation
to discuss how an effective plan might be made. A Plan can provide an
important benchmark against which to measure achievement.

The
Commission's work in this area has attempted to emphasise the need to
set some priorities and get to work on achieving them, rather than following
endless processes for their own sake or as a means of putting off decisions
and action.

We
tried to direct attention to some basic points:

  • can
    people with a disability get in to the places where commonwealth laws
    and programs are administered?
  • if
    they cannot now, what is being done to achieve equal access over time?
  • what
    is being done to ensure access to the program where access to the particular
    building is not yet provided?
  • can
    people with a disability communicate with the agency and receive information
    from it?
  • will
    they be treated with equal respect and effectiveness by staff compared
    with all other users of the agency's services?

It
surely cannot be too hard to make a plan to address these points and to
identify what further points might need to be addressed in future revisions
of an initial plan.

Disability
standards and other current initiatives

Of
course, there is more to eliminating discrimination than simply having
a law which says that discrimination is unlawful. Particularly with disability
discrimination, it is necessary to have more detailed specification of
what discrimination is, and what equality would mean in real life circumstances,
than is provided by the bare bones of the legislation. Provision in the
DDA for the Attorney-General to make Disability Standards, and for the
Commission to issue guidelines, recognises this.

I will
not attempt a detailed account of work in these areas today. The Disability
Discrimination Commissioner has spoken about them this week in Perth at
a conference attended by many of you. She also reports regularly on this
work in a newsletter which is widely distributed and appears to be widely
read.

But
a brief listing gives an idea of the range of work going on, in which
the Commission is involved with community, government and industry representatives:

  • draft
    Standards on equal access to public transport have been approved by
    Transport Ministers and are currently undergoing a Regulatory Impact
    Statement before the Attorney-General considers authorising them;
  • draft
    Standards on employment discrimination have been distributed for public
    comment;
  • a
    Taskforce established by Education Ministers is engaged with work towards
    Education Standards;
  • an
    issues paper on possible Standards on equal access to Commonwealth Government
    Information and Communications has just been released;
  • the
    Disability Discrimination Commissioner will be releasing draft guidelines
    on equal access to premises next month for public comment;
  • a
    discussion paper prepared by the Australian Building Codes Board, with
    the co-operation of the Commission and others, on possible revisions
    to the access provisions of the Building Code of Australia, is currently
    out for public comment;
  • the
    Commission has just released an issues paper on possible guidelines
    on accessibility of materials on the World Wide Web.

To
this list of activities, others may soon be added.

Representation
and participation

From
this list, it will be obvious that there are many important processes
running at once in relation to disability discrimination. Clearly, that
places considerable demands on those involved, in particular on disability
community organisations which inevitably lack the level of professional
secretariat and policy development capacity available to government. The
two rounds so far of public comment in the Employment Standards process
have each been delayed by three months compared to the timetables originally
agreed, to accommodate difficulties experienced by the disability community
representatives involved.

The
Commission will be talking with representative organisations and the Attorney-General's
Department to try to work out ways of avoiding further delays in these
processes in future, while ensuring effective participation by people
with a disability. Some of this may depend on resources provided by government.
Much of it may depend on the priority which organisations representing
people with a disability are prepared to give to the substance being dealt
with in these processes.

This
is really the message I would leave you with. It is a case of all systems
pointing to "GO". International standards are there, providing
guidance and moral benchmarks. The prejudice and apathy in the wider community
has been roundly challenged. Legislation like the DDA provides landmark
statements of commitment and public policy. More importantly, that legislation,
and the processes which it establishes, provide ways for people with a
disability and their representatives to secure equality for themselves.

More
than ever before in this country, equality is there for the taking, for
those prepared to go and get it. I wish you well.