The Charles Marshall Memorial Oration on the progress needed for people with disabilities in the United Nations Year of Disabled People 1981 from Richard’s perspective as a wheelchair user. He is also member of the IYDP National Committee of Non-Government Organisations which set the agenda Australia’s progress through wide-scale national consultations with people living with disability.

19 June 1981

Wheelchair users in minority as disabled people

It is my honour to be delivering the Charles Marshall Memorial Oration as a physically disabled person involved in that year. The international symbol of disability suggests a wheelchair, but we “wheelies” are in fact a small percentage of people with disabilities. Those with mental disabilities are the largest disability group but other areas such as arthritics, stroke, blind and deaf people as well as those with hidden disabilities such as epileptics and diabetics must also be remembered. The bias of my talk
is towards what I know best, physical disability.

International Year of Disabled Persons, IYDP 1981

Ladies and gentlemen, 1981 is the International Year of Disabled Persons, IYDP. The logo of
IYDP represents two people in perfect equilibrium surrounded by the United Nations laurel
leaves. My involvement in the year began in late 1979 when I was appointed to the National
Committee of Non-Government Organisations as the South Australian representative. In
September, 1980 I was seconded from the S.A. Health Commission to my current job as
Chairman of the Government Offices Sub-Council, I.Y.D.P. I speak to you tonight however, as
a private citizen giving his own private thoughts.

Travel as metaphor

My work with the National Committee of Non-Government Organisations involves a great
deal of travelling which has allowed plenty of time for my favorite past-time – daydreaming.
It’s very easy to do this floating along above the clouds, sipping a cool gin and tonic and
contemplating life from a great height. Air travel is a regimented and orderly activity which
requires little of the passenger beyond accepting service and obeying small lighted signs.
One is directed at the airports too by signs, an illuminated knife and fork shows the way to a
restaurant, while out in the street, signs tell where not to park, “no standing”, “taxis only,”
etc. By and large everyone obeys these signs without really thinking; we accept that these
particular instructions are necessary for the orderly running of a society.

Speaking of signs, you have all heard of Lourdes, the town where many disabled people go searching for
miraculous cures to their various conditions. Because of this Lourdes has a great deal of
traffic which has disrupted its traditional sleepiness. Recently after much debate a decision
was made to install traffic lights. All was well, cars went on the green light, stopped on the
red and it was generally conceded to be a great success. It was then suggested that
pedestrians also needed controlling, especially at the intersection before the healing waters,
more debate and the council decided to install walk signs to control this intersection. That
was the beginning of the new miracle of Lourdes. First, the red “don’t walk’ light came on
and sure enough everyone stopped and waited dutifully at the intersection, but on the
green “walk” sign, away went the crutches and the wheelies leapt from their chairs in
lemming like obedience.

Attitudes about disability need changing from pity

The real task of IYDP is to get people questioning their automatic responses and to think in a
different way about disabled people. Is it necessary to pity someone who has travelled the
world, has a family, and monthly sips of gin and tonic while flying around the country? My
friends call it junketing rather than suffering. Old, stereotyped attitudes need to be examined
and more appropriate policies presented which will allow the process of change to
accelerate. While no-one would choose to be disabled, it is not necessarily the great
tragedy depicted by the media or general opinion.

United Nations title for IYDP involves disabled people

Thinking anew on the way to present disability and disabled persons began with the United
Nation’s choice of title for the year. A great deal of thought was given to the title, The
International Year of Disabled Persons and it is annoying to hear it called the International
Year of the Disabled and all the many other variations commonly heard from the press and
even ministers’ speeches.

The International Year of Disabled Persons describes very clearly the intention of the United
Nations to involve disabled people. Had it been the International Year of the Disabled, that
would have suggested the conglomerate which is away from the personal or individual.
Had it been the International Year for the Disabled Persons, it would have suggested other
people running the year for disabled people, reinforcing the old image of passive
acceptance.

“Full Participation with Equality”

The International Year of Disabled Persons is very clearly about the individual and the
individual doing things for himself and other disabled persons – a big change in thinking.
The UN theme for Australia is “Full Participation with Equality”. Again, this theme suggests
disabled people being fully involved in the happenings of the year and with an equal
involvement with other people.

Disabled people excluded from running their own United Nations Year

Reality sadly has not been quite the ideal the United Nations would have wished, with perhaps the exception of South Australia. Here disabled people have been involved in the processes of decision making and, in the day-to-day workings of the Year. In most States, however, Advisory Councils and other
structures mostly comprise governmental people, heads of department and those involved
in the care and service of disabled people. A bureaucracy was formed to run the
International Year of Disabled Persons in Australia costing perhaps $2-$3,000,000. It is in fact
the same structure that was used for the International Year of the Child, a structure which
was assessed by all involved to have been disastrous to that year. One can only speculate on
the thinking which re-introduced it.

Committee that drove progress had lived experience

Tonight, I thought I’d tell you something of the National Committee of Non-Government
Organisations. The members of the committee have very divergent interests, with some
having had nothing to do with disabled people before, but who represent various national
coordinating bodies. The fact that half of the committee was made up of disabled people
is the unique feature in the constitution of this body. The Chairman, Prof. Laurie McCredie is
blind, deaf and an amputee who claims to be also slightly retarded. He is Dean of Law at
Monash University and represents the Australian National Council of and for the Blind. The
Australian Deafness Council’s representative is profoundly deaf and the entire Committee
proceedings are signed to him by an interpreter.

Key issues identified in 1981 by national consultation with disabled people

After many months of lengthy consultation and discussion, five arenas considered of critical importance for disabled people were crystallised: These are:

  • identity confusion – nomenclature – legislation
  • causation of disability – prevention and issues that handicap people
  • participation by people with disabilities in their own affairs
  • the problem of unemployment- employment
  • the problem of insufficient income – income security.

Disability language issues

Possibly the most important and certainly the most difficult for outsider to see its
importance is language issues. What do we call disabled people? Are they handicapped
people, helpless cripples, imbeciles, lunatics, invalids? Which terms are we going to use?

The first Bright Report in South Australia identified some 64 different terms used in SA legislation to describe people with disabilities. Legislators need to carefully choose words which are unambiguous
and which describe exactly the individuals or groups towards which the legislation is
targeted. For instance, the Handicapped Persons Assistance Act does not fund individuals
at all, although the title suggest it does. Governments also claim to provide transport for
disabled people under that Act when in fact the vast majority of those funds cater for
people who can use public transport – mostly socially disadvantaged people.

When looking for a definition it is important that others know who you are talking about
too, for by delineating the parameters, the definition then has its own in-built accountability.
The word “handicap” can be used to describe anybody and there is considerable pressure in
the community to use this word. A non-delineating word, it has appeal to many for its
flexibility, but it can also mean non-accountability and misdirection of funds.

Traditionally, the word “disabled” has been associated with people who have had a medical problem.
While nobody would want to remove the rights and need for services to this group of
people, we are in this year speaking about the International Year of Disabled Persons; that is,
those people who have had a physical or mental impairment which has left them with a
permanent long-term disability.

The way disability effects a person is his own responsibility, for not only is disability varied,
the way he relates to it determines its effect on his life. A disabled person may from time to
time be also handicapped because of the attitudes or conditions imposed upon him by
society. Just as in horse racing, handicap is imposed on a horse by the race committee. As
a result of poliomyelitis, I cannot walk, but with the use of a wheelchair I am mobile. My
disability is constant, but from time to I may also be handicapped when the community puts
a flight of stairs in my path, has a negative attitude towards me, or fails to provide the tools I
require to allow me to participate to my maximum potential.

Prevention of disability and handicap

The next issue isolated by the N.C.N.G.O. has two parts. The area of preventing disability and the prevention of handicap following a disability. The S.A. Health Commission’s
immunisation campaign and the Decibel Campaign are two examples of very necessary work
in prevention of disability. Helmets for motorcyclists, compulsory breath tests and other
road safety measures are making an impact. Incidentally the introduction of seat belts may
prevent death but they increase disability in road accidents.

The second area, the prevention of handicap, is far more complex and difficult. It can begin by de-humanising someone with the word “patient” or by giving someone an in-valid pension. All a disabled person can do about community attitudes is to become thick-skinned. Those who care for severely
impaired people should examine their behaviour carefully to ensure they are not
handicapping them by patronising or over-protective attitudes.

Alex Comfort, best known as author of The Joy of Sex, is one of the few serious writers to tackle the problem of trauma and the ego. He likens the required adjustment to that of a suitably dresses Volvo owner awakening to find himself the pyjamaed driver of a battered Volkswagen.

Participation by people with disabilities in their own affairs

The National Committee, the N.C.N.G.O.s, is also considering the question of participation of
disabled people in their own affairs. Most groups enjoy determining, to some extent,
their own futures, or at least to have the appearance of doing so. Disabled people have in
the past been rarely given this opportunity. Most boards of institutions have no disabled
people on them, nor are disabled people consulted when decisions are being made. Even in
this important International Year of Disabled People very few decisions are being made by disabled people.

We must also guard against vicarious participation through professions following the
computer model where the computer draws and gathers the knowledge of the human
beings it serves, stores it and then takes it over as its own. Disabled people are continuously
giving information to professional bodies, assisting them to understand disability,
assisting them to understand the requirements and the needs of disabled people, assisting
them to understand better the problems, only to find the knowledge is then professionalised
and turned not towards assisting people, but towards excluding them further under the
guise of professional expertise.

This whole area of participation and equality is, as recently pointed out by Senator Fred Chaney,
the Minister now responsible for I.Y.D.P., a good example of the pain of the Year. In any
process of change there is inevitably pain. The International Year for me has been a process
of pain, soul-searching, doubt and at times paranoia. It has also been a most wonderful
experience of learning and enjoyment, but one is constantly aware of one’s lack of
knowledge, skills and personality to tackle these problems, for the problems of disabled
people are in fact the problems of the world. I was also ignorant of the difficult process of
trying to make simple and obvious changes.

Naturally there is also division amongst disabled people. Having been kept from decision-making processes we are often naive, with only the bond of disability to unite a great
variation of personality, creed, politics, race and sex. There is therefore a great need for
national coordinating bodies and information centres, run for and by disabled people
through which a national voice may emerge. While dissention is good, care must be taken
that others do not exploit such dissention for their own purposes.

Our sights must be kept firmly on the common good, not just our own selfish arenas of
difficulty. If nothing else, the experience gained by those disabled people who have been
involved in 1981 will leave a contact network of people throughout Australia, trained with a
better knowledge of how the system works and how to manipulate it. This group will be much more effective advocates at the end of 1981 than they were at the beginning.

Painful attitudes about disability

For disabled people to achieve full participation with equality there must be a great deal of
painful change within our community. The International Year is indeed testing the sincerity
of community attitudes towards its disabled members. Does it want them put aside,
separated and institutionalised or does the community accept that disability is a fact of life
and that its members who are disabled are part of that life and therefore part of the
community? Each of us must search our own mind regarding our attitude towards disability
and so must organised groups.

Do we think that putting disability, especially imperfection as some early Christians thought? There are still deep-seated guilt feelings regarding those sorts of teachings in people. The imperfect sacrifice, Jesus healing the sick, what of those he didn’t heal? These are questions which I know many of the Christian groups of our community are looking at and considering during I.Y.D.P.

Organisations are going to have to change. Wolf Wolfensburger pointed out when he visited
Australia that an association is an association of people with like problems coming together
to try and find common solutions. Conflict occurs when the association begins to deliver a
service to its members when the service part of that association quickly begins to “wag the
tail”. Interestingly in this year, as the result of pressure from disabled people, its associates,
a prominent Victorian institution decided to forego its major annual fund-raising campaign
because its charitable image was so contentious, the Miss Australia Quest run previously by the Spastic Centre.

There is also a great deal of pain for many parents during I.Y.D.P. when they and their disabled children or teenagers are asking if they’ve done the right thing? All teenagers question their parents’ attitude, but it becomes even more emotional and seemingly ungrateful when disabled children begin to question their parents. Many parents have over-protected their children as a means of hiding them from the realities of life. Some institutions too, fall into the same trap of guilt compensation and provide, especially for
disabled children, lavish surroundings and attention which does nothing to prepare them for
the realities of community life. Sometimes parents try to hide sexuality from their disabled
children, pretending it just doesn’t exist.

A good example of the pain of parenthood is one of the ads produced by Philip Adams, by a
girl named Narelle. In this advertisement a very charming girl spoke of her mother’s
involvement in her up-bringing and of her over-protection of her. She gently says, “the day
my mother died my life began; it was the beginning of me”. This statement has caused a
great deal of turmoil with the Ministers who have had to decide whether to let this
advertisement go to air. The decision will not be made by disabled people, but by those who
see themselves in a protective role. I guess the lesson from Narelle and the consequence of
what is happening with that advertisement is lost on most politicians.

Issues of employment for disabled people

The arena of employment is also receiving attention from the N.C.N.G.O. The greatest
security for most of us is to have a job and that is the aim of most disabled people. The
question is, how do we allow for the employment of disabled people especially in a
community that is already facing unemployment for its young fit members?

One scheme tried overseas is the percentage or quota system, where governments
legislated how many of the workers should be disabled and so on. The scheme hasn’t worked very
well, with the law either broken and fines paid or the definition exploited.

Another system which has had some success overseas has been one of reserved
occupations. Many of you will remember the ex-service lift attendant. I have seen this
system work well in an American town which reserved the occupation of parking attendants
for physically disabled people. It had two good consequences. People in wheelchairs would
race along the streets with sticks holding chalk on the end, marking tyres. The wheelies got
rid of a great deal of aggression and anger against society by slapping parking stickers on to
windscreens, while the town on the other hand had less trouble with beaten-up parking
attendants. It was a reversal system of getting disabled people employed and pay tax, by
keeping them on the streets.

Disabled people do get upset however, when they find that the areas concerning them are staffed entirely by fit people. A continuing example of this is the branch of Social Security which sends its
officers to tell employers to employ disabled people. The people who are used on this task
are all non-disabled. One would have thought the hypocrisy of do as I say would have
pricked even that thick-skinned bureaucracy by now.

A strange anomaly of a free enterprise system is how little the possibility of self-employment
for disabled people has been explored. So little thought has been given to the option of a
business grant or cheap interest loan for those disabled people who demonstrate an interest
to run their own business. Slow Worker Permits are in fact an option in South Australia but
are rarely given. The scheme is not favoured by Unions and is open to abuse.

Following the work of Mark Gold, an American whose successful business involves
promoting disabled employment, considerable interest is being shown in the open
employment of intellectually disabled people on the production line and with
other repetitious work. Gold found that by breaking simple processes into many
components, these people could be taught to fulfil these roles better than able-bodied
people. The boredom of the tasks did not seem to affect them and production rates
were the same high rate at the end of the day as at the beginning. Imagine the amazement
of factory owners when, during demonstrations of Gold’s work, employees had to be
physically restrained from working through lunch hours and to indeed stop work at the end
of the day.

The traditional field of employment for disabled people is through sheltered workshops. Are
they the traditional disabled people of the 50’s or have they been slowly excluded by
another group? Are sheltered workshops cost-effective for what they are trying to achieve?

There are 7,000 people working in sheltered employment in Australia and last year, only 29 of them
were returned to open employment. The majority of people earn about $10 per week for
their 40 hours, plus their pension which the government pays to the workshop for
reimbursement to the recipient. This sleight of hand helps boost the pay packet, thereby adding some
incentive to attend.

Many moderate to severely disabled people actually pay to attend activity therapy centres where
productive work is done. A great deal of honest open discussion involving many community
areas need to take place during I.Y.D.P. regarding sheltered workshops and activity therapy
centres.

Issues of income security for disabled people

The major emphasis by the N.C.N.G.O. Committee has been to raise debate on insufficient
income or – income security for disabled people. In March of this year the Committee join
sponsored with A.C.R.O.D. the wide distribution of a paper which presented seven options
for consideration by disabled people, with the hope of mounting a national united
campaign. The framework of the paper had three acknowledged biases.

The first argues that disabled people have a higher cost structure than other members of the
community. As a result of this paper, there seems to be now a relatively wide acceptance of
the extra cost of disability even in regard to other pensioners. In many cases these additional
costs of living increase with the severity of disability. Those people whose disability for
instance precludes them from public transport are forced to use the most expensive
alternatives.

As a taxpaying disabled person, I pay for a system I can’t use as well as providing my own
alternative, with no allowable deductions. One disabled employee I know spends $60 per
week on transport to her employment, with no tax concessions. The disabled home-owner is
often unable to cut his own lawns, mend or replace a gutter, so that expensive outside help
has to be engaged for even the simplest tasks.

Equipment challenges

Independence equipment also has to be bought and maintained. An electric wheelchair for
instance cost approximately $3,000 – I need two, as well as a push chair at about $4.00.
There are home modifications for deaf people for example, who require door bells and baby
cry alarms to be hooked to light switches, or to purchase porta-printer systems at $800 each.
The disabled person may also have special clothing requirements or extra wear and tear due
to crutches or other equipment. They carry the burden of, hearing aid batteries, catheters,
or other medications and ointments.

Bias against community living doesn’t make economic sense

For these reasons the paper does show a bias of a particular concern for disabled people
and addresses itself to the problem of equalizing this group with the rest of the community.
It is surprising that the community has not been more anxious to supply better choices for
non-institutional living, for the little available information suggests there would be great
savings.

A conservative estimate of a leading permanent care institution in South Australia showed
that about 85% of clients could be community maintained with appropriate aids and
assistance. With a cost of institutionalizing a disabled person varying from $18,000 to
$36,000 per year, there is an obvious need for careful assessment on monetary grounds
alone.

Disability allowance proposal to support extra costs of disability

The proposal gaining most support by disabled people is for supplementary allowances to be
paid according to disability – a kind of C.P.I., disability basket of extra costs for which
payment is made direct to the disabled person. If the disability whether physical or mental,
precludes the use of public transport, then a transport allowance is added.

An attendant care allowance for those unable to dress and bathe themselves, up to the value of $200 is
also proposed. The figure of $200 is the equivalent amount the Commonwealth
Government would pay to a nursing home, the other alternative. Other allowances for
equipment etc. are also proposed, all of which are on a sliding scale so that those with the
greatest disabilities receive the most help. The proposal is aimed at equalizing the disabled
people with the rest of the community by recognising the extra unavoidable, non-optional,
costs of disability.

Many opponents of the proposal fear abuse, by disabled people spending their allowances
at the races or other such frivolities. This may well happen in some cases, just as those in the
wider community may not always spend their money according to our own high standards,
but there is no evidence to suggest that there would be any greater abuse. Disabled people
are no more or less honest than the rest of the community and we are all aware.

Advantage of disabled person as the purchaser

The advantages of paying direct to the client far outweigh the problems. Firstly, it normalizes
disabled people with the rest of the community who use their income to buy the goods and
services they want. This system puts the disabled person (purchaser) in charge which is good
for him and good for efficient service providers. If one service is not to the disabled person’s
requirements, he or she buys that service elsewhere -he is in charge of his requirements as each one sees
them.

Dignity of choice for people with severe disabilities

Currently disabled people have to accept passively and usually with a smile, whatever others
decide they need and in the way that best suits the providers. If we want disabled people to
be independent, self-determining and less passive acceptors, then we have to allow them
the dignity of making their own choices through their own decisions.

The final bias of the N.C.N.G.O./A.C.R.O.D. Income Security Paper is towards those with the
greatest disabilities. This group often with combination mental and physical problems are
the traditional too hard basket group which no-one wants. The work output is not good
enough for sheltered workshops, they are not necessarily sick to attract a medical interest
and often benefits, and their families usually struggle at great cost with little or no help to
keep them from institutions.

Many disabled groups have recognised and accepted this bias, others haven’t. Some
organisations would like to broaden the attack for better income, through abolition of the
means test campaigns. For the government to do nothing for pensions this budget, a further
$110 million has to be found. The cost of removing the means test is incalculable, although
some revenue would return through taxation. However, none of these measures would help
to equalise or benefit the very disabled person who can’t work, but on the other hand
carries the greatest financial burden.

There are biases in the paper but at this stage no-one has convinced us to apologize for
them. The International Year of Disabled Persons is bringing forward many other areas of
debate which I haven’t mentioned. I do believe however, that if Charles Marshall had been
able to set his X ray machines over 1981, he would have been enough substantial shadows
below the surface froth and bubble to excite him.