SEPT.. 1982



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My name is Donald Edward Pugh, resident of the

Quadriplegic Centre, Selby Street, Shenton Park. My

occupation is Curriculum Coordinator for the South West and

North East Metropolitan Regional offices of the Education





I am 35, born on 3rd Jan, 1947 in Montreal, Canada. I

attended university in Canada between 1966 and 1972 where I

graduated with three university degrees: an Honours Bachelor

of Arts from Queen’s University in Kingston, Ontario in

1970, a Master of Arts from Carleton University in Ottawa in

1971 and a Bachelor of Education from Queen’s in 1972.

I also obtained a commission in the Canadian Armed

Forces as a Second Lieutenant. In addition I have graduated

from Murdoch University in Perth in 1980 with a Masters of



My employment upon arriving in Australia in Feb. 1976

as a permanent migrant was as a high school teacher for the

Education Department. In 1977 after one year’s teaching I

commenced post graduate studies in Education and obtained a

research position as Curriculum Coordinator at Hamilton High

School. The position involved assisting the staff in

curriculum planning in terms of assessing educational needs,

exploring alternative solutions to needs, implementing new

programmes, evaluating innovations and writing submissions

for new projects.






3.1 The Accident:


On December 22, 1978 the accident occurred during the

first week of the summer vacation. I was crossing the

Nullarbor Plain to spend Christmas with my girl friend,

Janet and her family in Melbourne. My intention was to fly

to New Guinea for a month’s trek in the Highlands. The

accident put an end to these plans.


The actual accident is a nightmare to remember and

still gives me restless nights and unpleasant memories. The

driver of the car tell asleep at the wheel in the early

hours of the morning and rolled the car over. I found

myself sitting in the passenger’s seat in considerable

agony, unable to move any part of my body with blood running

down my face from lacerations in my scalp.


3.2 The Hospital


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The subsequent processes involving sewing up the

laceration in the scalp, drilling two holes in my skull for

calipers, and setting my neck were done while conscious and

were terrifying.


The following eight weeks, held rigidly in traction by

steel calipers embedded in my skull placed me in a position

where I was unable to turn or even feed myself. These weeks

were perhaps the most tedious and unpleasant of my entire



There was devastating uncertainty, firstly whether I

would live or die and secondly whether I would recover any

use of my limbs and be able to walk again. The discovery

that I was to be paralysed for life and would be largely

dependent on other people for assistance in every day living

was a traumatic one which was difficult to accept.

Catheters were performed every four hours and a

constant thirst prevailed because of fluid restrictions of

150 ml. every two hours. Every second hour I was turned from

side to side resulting in a very poor and disturbed sleep at



Removal of calipers and introduction of a Somi neck

brace led to considerable frustration. The brace failed to

fit properly and led to constant pressure, irritation and



The move from a horizontal position to a sitting

position was a slow process which involved considerable

nausea and dizziness over a period of weeks. The

availability of an electric wheelchair was a considerable

aid during this period. Adaptation to a new life in a

Wheelchair was a slow and difficult process which is still



Visits outside the hospital during rehabilitation were

difficult since I could not get in or out of a car without

being lifted. It also took considerable time to become used

to being gazed at while in a wheelchair in a public place.

This eight month prolonged isolation in hospital led to

reduced contact with friends, the loss of acquaintance, and

considerable hardship for those who visited regularly.


3.2.1 My Parents and Friends


The accident had a devastating effect on my parents and

friends. My parents who are in their mid seventies arrived

at considerable expense in Perth from Belleville, Ontario,

Canada within two days and remained in Perth for six months

during my recovery. They were contacted the night of the

accident by phone and were given the information that I had

been severely injured. It was not clear at the time whether

I would live. I desperately needed the support of my parents


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to recover.


Loss of the triceps muscles consequently made transfers

into cars or onto beds difficult or impossible. Many of the

tasks which can be managed easily by a C7 quadriplegic such

as transfers or dressing I found impossible as a C5/6

quadriplegic. The independent lifestyle which paraplegics

enjoy is impossible for such a high lesion quadriplegic

without the expensive aid of an attendant.


4.2 Loss of Sensation: Heat and Pressure


In addition to the loss of psychomotor control I found

myself also with the loss of ninety percent of the body’s

direct feeling. All direct feeling below my shoulders has

been eliminated. My arms and hands are also without direct

sensation or with limited direct sensation with the

exception of the thumb and the inside of the arm. Since

direct sensation is lost I cannot feel heat or pressure on

the surface of the skin.


I must take constant care or I’ll find myself with

pressure sores or burns. For instance sitting on a hard

object on a car seat could cause a skin problem.

I burned the side of one leg last year by sitting too

close to a heater. I didn’t realize I was being burned until

I smelled my scorched clothing.


I must use a specially insulated mug for hot liquids as

I cannot feel the temperature of normal mugs and glasses.

Other wise I receive blisters on my hands.


Recently, I slept on my side with my knees together.

Being unable to feel or move I woke up in the morning with a

nasty sore on my knee the size of a fifty cent piece. My

ankles are another area of concern subject to pressure and

sores. Consequently I must sleep with a foot roll to protect

my ankles, with pillows between my limbs and be turned to

alleviate pressure every four hours.


However, ironically I can feel pressure internally and

live with constant pain which fluctuates in intensity but

never disappears. This pain is associated by myself with my

bladder which feels as if it has been stabbed with a knife

and my fingers which constantly feel ‘half frozen’. My

buttocks also get a ‘burning’ sensation after prolonged

lying or sitting in one position.


4.3 Body Image


The loss of muscular control and movement causes the

development of a ‘quadriplegic profile’. This distinctive

alteration in the body’s appearance includes:


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a swelling of the ankles

b muscle wastage in legs

c abdominal muscle wastage and pot belly appearance

due to atrophy of the stomach muscles

d wastage of arms and wrists to create bony elbows,

gaunt and thin wrists and hands with clenched fingers

e bony chest and shoulders due to muscle wastage


I have also lost my six foot four inch height and now

sit at four feet Len inches. Rather than looking down at

people I must now look up at everyone. My height and weight

which were once a source of pride have now ironically and

cruelly become an added hindrance. These former assets now

make me more difficult to manage and reduce my mobility.


4.4 Loss of Control of Body Functions


4.4.1 Bladder


As a result of quadriplegia I no longer have conscious

control of my bladder. The unfortunate results are these:

a The sphincter muscle of the bladder as been

weakened by two operations so that my bladder will empty by



b I must wear a condom and leg urinal. This

occasionally usually once a week leaks and wets my pants

and seat cushion and causes embarrassment. Putting on the

condom with a special skin glue is a tricky job which I

cannot do myself and which takes some time each morning.

The condom occasionally causes sores on the penis and has

led to confinement in bed. The leg urinal bag usually fills

in a half day. I must obtain help to empty it.. This may be

the cause of embarrassment when at work since I am at

schools and sometimes have to ask strangers for help. Often

I run into difficulties since toilet facilities are

inaccessible to wheelchairs and I am unable to reach the

toilet to empty my fish. These problems are the source of

acute worry.


c At night without the condom I wet the bed and must

sleep with a bottle tied in place. This occasionally spills

which wets the bed, necessitating a change in sheets. The

problem is damaging to any sexual relationship.


d Because my bladder responds by reflex to stimuli, I

must ‘tap’ myself by day regularly and must have my bladder

tapped and ‘expressed’ or pushed regularly during the night.

Tapping myself during the day is an embarrassment because

the process is unusual and other people stare. At night,


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tapping is also necessary at midnight and 4 a.m. The process

causes dependence on other people by waking me and results

in interrupted sleep.


e Inadequately emptied bladders become infected and

necessitate use of antibiotics some with unpleasant side

effects. I was confined to bed for one week as a result of

the side effects of colymycrin, one antibiotic used. Some

infections require deep intramuscular injections three times

a day. Requirements for nursing aid causes problems. These

infections are a source of deep concern to me.


4.4.2 Bowel


Quadriplegia removes control of the bowel. Implications



a need for a special diet suitable for stimulation of

the bowel E.G. food high in roughage, fruit etc.


b extreme regularity in bowel treatment to the point

that it disrupts a normal lifestyle. E.G. one must adhere to

a bowel treatment nightly or get up early 5.30 a.m. on a

bowel treatment schedule . The morning schedule is tiring

after a late night. The nightly schedule is not feasible

since it would interfere with my social life.


c need for suppositories and for a person to insert

them. This leads to a distressing dependence on nursing

assistance to insert them, to be lifted onto the commode and

to be cleaned properly following the treatment. The process

is an unpleasant one for the helpers because the

suppositories result in an occasional accident in the bed or

a bowel action onto the floor while being wheeled to the



d The suppositories do not always work immediately

resulting in a delayed bowel action in one’s pants. This

happens approximately every six weeks. I had an important

conference with a group of teachers recently at which I was

giving the introductory lecture. I arrived at work to find

to my horror the delayed action caused by my suppositories

had led to a bowel action. The sense of humiliation I felt

was overpowering and was not alleviated by the knowledge

that a similar accident was probable again periodically. Its

hard to maintain one’s self esteem under such circumstances.


e Sometimes the suppositories do not work at all. This

leads to constipation and the need for laxatives.


4.4.3 Dizziness and fainting


One of the unpleasant effects of quadriplegia is a

general sense of dizziness when I am gotten up in the

morning caused by poor blood circulation to the brain. For


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a long period of time I wore a tightly laced corset around

my waist to counteract this effect, Occasionally, when I am

quickly lifted to a commode I faint. This may happen in such

a way that I do not even have time to call for help. The

sensation is a horrible one accompanied by gradual loss of

sight and of what little movement that I have left.

Fainting necessitates that I be closely watched.


4.4.4 Loss of Sexual Functions


The loss of physical sensation has led to a decline in

sexual functions. The lack of general body feeling to react

to caresses combined with a total lack of feeling in the

sex organs and incontinence have led to reduced sexual

drive. This, in turn, has caused impotence and great

difficulty or an impossibility in achieving an enduring and

satisfying erection.


The interaction of these factors has led to a very

unsatisfactory sexual relationship since my injury. I have

not, in fact, had an enduring erection in the last six

months. This inability is very stressful to me and I

would agree with the results of a recent American survey.

It found that American quadriplegics rated restoration of

sexual function more highly than restoration of mobility.




Adjustment problems caused by my disability have been

substantial. It is interesting to note that the NSW

Commission into Discrimination defined a disabled person as

"one who as a result of physical impairment together with

community attitudes and the physical environment is

substantially limited in his opportunities to enjoy a full

active life."


This definition stresses both the lack of access caused

by disability and attitudes towards the disabled as

essential ingredients of disability. I would like to list

these problems and their effects on me under the headings:

difficulties in access and transport because of my

immobility, difficulties in manipulating everyday objects, a

substantial decline in personal comfort and psychological

problems emerging from the injury.


4.5.1 Discrimination re Access and Its Effects:


One immediate and distressing effect of transition into

a wheelchair is the realization that the world is designed

for ‘normal’ walking people. I found that my accident in

seconds plunged me into the ranks of an ignored and

discriminated against minority. Although no sign posts are

erected the incessant lack of access up long flights of

stairs to restaurants, theatres and shops are the equivalent


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of posters stating "No Disabled Wanted."

It has been noted by the N.S.W. Parliamentary

Commission into Discrimination 1979 that this

discrimination "may lead to reduced social interaction

between physically handicapped and able bodied people."

Costs, they reported, are severe, socially, economically and

psychologically. I can only agree with their assessment.

Socially, I find that many of my friends’ houses are no

longer accessible. I cannot drop by to visit casually.

Flights of steps and rainy weather are both problems. Such

friends gradually grow remote with my visits less and less



Economically, jobs, I know, will be difficult to obtain

in spite of qualifications simply because of architectural

barriers. Regardless of my merits some jobs will be closed

to me simply because I’ll be unable to get into the office.

Psychologically the dimensions of my world have been

reduced to those very immediate areas measured in square

meters that can be reached by pushing the chair.

Being in a wheelchair has had these immediate effects

on me.


a I am now excluded without a lift from many of the

city’s centres of recreation which I used to visit. e.g.

bowling, skating, restaurants etc.


b Theatres that are accessible have these problems:


i My wheelchair blocks the aisle and causes a

fire hazard and annoyance to theatre goers.

ii My wheelchair may be placed at the very front

of the hall where I feel conspicuous and ill at ease.

iii The wheelchair may be placed at the very back

behind the very last row. Here visibility is difficult and

acoustics may be poor.


c I am now excluded from many restaurants and hotels

because of stairs.


d I am excluded from many stores.


e In my present employment which involves visiting

schools, many schools are two story and are inaccessible

without assistance. In every school I require some

assistance up and down small steps. Consequently I am unable

to travel anywhere in schools without constant personal



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of posters stating "No Disabled Wanted."

It has been noted by the N.S.W. Parliamentary

Commission into Discrimination 1979 that this

discrimination "may lead to reduced social interaction

between physically handicapped and able bodied people."

Costs, they reported, are severe, socially, economically and

psychologically. I can only agree with their assessment.

Socially, I find that many of my friends’ houses are no

longer accessible. I cannot drop by to visit casually.

Flights of steps and rainy weather are both problems. Such

friends gradually grow remote with my visits less and less



Economically, jobs, I know, will be difficult to obtain

in spite of qualifications simply because of architectural

barriers. Regardless of my merits some jobs will be closed

to me simply because I’ll be unable to get into the office.

Psychologically the dimensions of my world have been

reduced to those very immediate areas measured in square

meters that can be reached by pushing the chair.

Being in a wheelchair has had these immediate effects

on me.


a I am now excluded without a lift from many of the

city’s centres of recreation which I used to visit. e.g.

bowling, skating, restaurants etc.


b Theatres that are accessible have these problems:


i My wheelchair blocks the aisle and causes a

fire hazard and annoyance to theatre goers.

ii My wheelchair may be placed at the very front

of the hall where I feel conspicuous and ill at ease.

iii The wheelchair may be placed at the very back

behind the very last row. Here visibility is difficult and

acoustics may be poor.


c I am now excluded from many restaurants and hotels

because of stairs.


d I am excluded from many stores.


e In my present employment which involves visiting

schools, many schools are two story and are inaccessible

without assistance. In every school I require some

assistance up and down small steps. Consequently I am unable

to travel anywhere in schools without constant personal



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f Access to swimming pools and beaches is often



g sidewalks frequently have curbs that make them into

frustrating barriers.


h Where ramps are available, they seldom have the

gradient of 12:1 required by a high level quadriplegic such

as myself


i. Doors often open outwards and are difficulty for me

to open.


j Tables are usually too low for my wheelchair and are

impossible for me to wheel underneath. This is a particular

problem in libraries since I cannot take notes and in

restaurants since I have trouble reaching my plate.


k Phone booths are inaccessible.


4.5.2 Paralysis of the Hands: It’s Effects.


Paralysis of my hands and my inability to use my thumbs

and fingers or even to feel them has, I have found, rendered

many of today’s products inoperative for me. It is

difficult to imagine a technological world filled with knobs

which one can’t operate. Yet this is the world into which

have been plunged. Knobs that must be pulled or twisted

require a muscular finger grip which I lack. Consequently,

radios and cassettes will not operate for rue, televisions

are frustrating, light switches and plugs are difficult for

me to use and car instrument panels are maddening.

Telephones with rotary dials are difficult to dial and

placing coins in slots is nearly impossible. These problems

may be overcome by expensive modification of equipment.

Examples include push button telephones, controls with

levers or controls which slide.


There is difficulty in reaching for books on library

shelves, using card indices, microfiche and microfilm

readers and filing cabinets.


Typewriters must be used one key at a time, a

frustrating experience for a formerly rapid touch typist who

could maintain 80 wpm.


Dining room utensils are ‘manipulated clumsily and

knives cannot be gripped in order a cut my own food. I can

no longer make my own meals and have been deprived of

cooking, an activity which I enjoyed greatly.

I can no longer maintain or clean a house or my car.

Hired help must be obtained to do jobs such as lawn cutting,

gardening, cutting wood, painting, engine repair etc.


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Of course I cannot do such simple dressing jobs such as

doing up bottoms or zippers of flies or jackets or pulling

on and tying shoes.


The inability to use my fingers has above all else

reduced my functionality and self-esteem as a person.


4.5.3 Discrimination re Transport


Confinement in a wheelchair, combined with my lack of

triceps and inability to lift myself, excludes my use of

public transport. Buses are inaccessible. Unlike

paraplegics who easily lift themselves from chairs to taxis,

I find that my high level of paralysis deprives me of this

strength and mobility. Even this mode of transport is denied



I can drive my car providing I am assisted into it.

cannot leave it unless a person with a degree of skill is on

hand to assist me out.


Naturally I am not as competent a driver as I would

like to be. I have to reduce speed drastically in order to

be able to turn and I am frequently abused for being too

ponderous. I can allay this to some extent by carrying signs

and announcing to the world in large print that I am



I do not feel totally safe driving alone. Last year

while I was driving, an electrical fault caused my car to

catch fire. At the time I was averaging 90 k/hour and

noticed smoke emerging from under the car dash board. By the

time I pulled the car to a stop at the side of the road a

fire in the wiring beneath the dash had eaten a large hole

in the dash and was dropping molten burning pieces of

plastic onto the car’s carpet. As my passenger got my

wheelchair and I commenced to get out, flames caught hold of

the thick carpet and commenced to ignite the seat. the car

interior had filled with thick smoke and flames were

creeping along the windscreen. Within minutes of leaving the

car following my lucky escape, the interior had become a

raging inferno. The car burned to the wheels. I was badly

shaken by the narrowness of my escape having barely managed

to get out in time without being seriously burned and only

due to the quick help of a passenger. I now really wish the

independence of entering and leaving a car by myself.

Consequently, I need a van with a lift and suitably

modified so that I can drive, enter and leave independently

without getting out of my wheelchair. Such vans are not

manufactured in Australia and must be imported from the US

and converted to right hand drive. Provided I can afford

such a van, they provide a convenient and well tested means

of independent transport for quadriplegics.


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4.5.4 Time


I have found disability is placing severe

Constraints in these ways:


It causes an unfortunate consumption of time in


a getting up and going to bed may consume over an


b bowel treatment and a shower consumes another hour.

c movement in a wheelchair is much slower than


d getting in and out of a car consumes nearly twenty

minutes or longer, depending on the wait until assistance is

available. Sometimes twenty minutes is spent in waiting


e because I must live in the Quadriplegic Centre, a

one and a half hour return drive from work, I am now missing

the five kilometre return trip from Kardinya, my residence

prior to my injury.

f there is tremendous wastage of time because of my

clumsy manipulation of books and papers, because of my

slower writing speed, because of my loss of typing ability

and because of my difficulty in picking up papers off the

floor or desk. Frequently I have to wait for assistance.


As a result of the expenditure of time caused by

disability, and combined with my lack of endurance and

tiredness, a situation is created whereby very little

leisure time is available.


Many nights I am compelled to retire to bed at 8 p.m.

giving me three hours following my arrival home to eat and

to complete any office work. This contrasts with the leisure

time I possessed before my injury.


The availability to me of labour saving devices such as

a microprocessor system would make my labour more efficient

by reducing the number of manipulative activities required

of me.


4;6 Personal Comfort


Compared with my previously high degree of

self-sufficiency and satisfying activity my personal

physical comfort has been sadly eroded by my accident making

life in some cases a trial of endurance with


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pain, tiredness, coping with bladder and bowel accidents,

uncontrollable spasm, uncomfortable posture and total



4.6.1 Pain.


Reference has already been made to chronic pain which

has been caused by the accident.


4.6.2 Fatigue


Confinement to a wheelchair for long periods of time,

often twelve hours a day, has numerous undesirable effects

on me:


a Stiffness is a real problem.

b Fatigue is another problem which must be coped with.

While an able bodied person can relax, stretch his muscles

by getting up and walking around, I am no longer afforded

this relief.

c Consequently, my endurance is lowered. I become

tired much sooner than before my injury.

d I also become very tired from physical exertion

after a short time. Pushing my wheelchair up a twenty meter

slope that is only slightly graded is a major effort which

requires considerable time and numerous rest periods.

Getting in and out of a car is also an exhausting activity

which is undertaken as infrequently as possible.

e The consequence of the factors mentioned above is

immobility and a decline in the availability of my leisure

time in real terms since I must spend more time resting than

a normal person.


4.6.3 Wetness


It is frustrating for me to find myself wet as a result

of a leaky condom between my penis and leg urinal. On

excursions or at work this misfortune means that I may have

to sit in wet pants on a sponge cushion saturated with urine

for as long as eight hours. My present rubber roho cushion

does not absorb urine and causes urine to drip from the

cushion onto the floor or carpet. Leaving work to return

for a change in clothes necessitates a forty kilometer drive

and two hours absence. Being changed requires being lifted

onto the bed and aid in removing my clothing and replacing

and regluing the urinal bag. The frequency of wetness is

high due to accidents while being assisted into and out of

the car.


Accidents at night are less common but can result in

being in a wet bed for as long as four hours.



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4.6.4 Bowel Accidents


These happen about every six weeks due to faulty or

delayed action suppositories. The voiding of the bowels

accidentally while at work or on excursions is a severe

embarrassment for all concerned.


4.6.5 Spasm


Spasm is a problem in these ways:


a Involuntary contracture of the leg muscles causes

difficulties in moving my legs when transferring.

b Contracture of my stomach muscles throws my torso

backwards and causes me to lose my balance. Being tossed out

of my chair is a problem when it occurs at work. For

instance I spasmed out of my chair onto the floor during the

course of a job interview in 1981. The interviewer had to

get assistance to lift me back into the wheelchair.

c At night my legs may spasm off the bed and I am

required to ring for help. The movement of the legs may also

spill my night urinal bottle. Spasm varies from day to day

and over time. I have been prescribed a drug to reduce its

frequency and strength.


4.7 Temperature


My personal comfort is dependent on close temperature



a Hot Weather:


An inability to sweat has eliminated my body’s cooling

mechanism and results in distress and faintness if exposed

to hot sunnier weather, Consequently, my mobility is limited

during hot weather for almost a quarter of the year to air

conditioned rooms or air conditioned cars. Because my

working place is not air-conditioned, my efficiency is

lowered during the summer and I must leave early from work

during the hotter days in order to avoid heat exhaustion.


b Cold Weather:


I am also very sensitive to cold. Normal room

temperatures seem cold to me, perhaps because I cannot

exercise easily to improve my blood circulation and through

loss of the body’s ability to expand and contract blood

vessels. Consequently well heated accommodation is essential

during the winter months for any sense of personal comfort.

I find at work that I require a heater and even then I often

feel cold.


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This loss of the body’s regulatory ability leads to

discomfort in summer and winter.


4.8 Posture


I find posture in a wheelchair a problem. My balance is

poor and I fall out of the chair if I lean very far in any

direction. Lacking abdominal muscular control, I maintain

my balance largely with my head and by hooking my arms

around the back of the chair. Tiredness reduces my sense of



If my rear is seated too far back in the chair, I have

a tendency to fall forward onto my face on the floor. If

seated well forward, I am secure but cannot lean forward to

eat or write. The day is spent in an incessant struggle to

obtain the correct balance points to meet my needs of the



I have fallen from my chair several times. One

accident required x-rays for concussion. Another time at

school resulted in abrasions and bruises and the

embarrassment of having teachers and students pick me up off

the concrete. A third time was during a job interview in

front of a prospective employer.


4.9 Dependence


Dependence affects me it, two ways,

The inconvenience and discomfort it causes and expense due to

vastly increased costs of hiring services.


a. Extent of Dependence:


A constant source of frustration and annoyance is my

complete and continuing reliance and dependence on other

people. It irritates me to have to ask other people to

assist me incessantly in the simplest of tasks.


I am dependent on help to be undressed, to be turned at

night, to be washed, dressed, to be helped in and out of the

to cut my food, to pour coffee, to do my laundry, to pick up items I drop etc. The

list seems endless.


Let me illustrate just one problem of dependence by

telling about the problems and costs I have associated with

my personal dress.


As a result of the accident my clothes need to be

tailored to fit. I found that all my pants were too short.

I now find that I cannot use pockets, buttons or tuck in my

My pants are consistently pulled up my legs and are

stretched tight around the crotch on transfers. I cannot


Page 17


pull my pants down and must request aid of someone to give

my pants a tug. Nor can I roll up shirt sleeves or do up or

untie ties or shoe laces.


I require assistance to put on or take off clothes for

personal comfort. For instance I need help to put on a

jacket to go outside in winter. I am prevented from the

comfort of wearing short pants in summer because of the

necessity of wearing a urinal bag strapped beneath my pants

to my leg.


Keeping clothes clean is also difficult. Lack of use of

my fingers leads to sloppy eating and more frequent food

spillage on my clothes than experienced before the accident.

Liquids such as coffee or tea are particularly likely to be

slopped because I cannot grip cups firmly. This is

particularly embarrassing when eating in public places.

I also have difficulty in washing and drying clothes,

cannot iron clothes and ant unable to perform simple

maintenance such as sewing on buttons.


The dependence caused by my quadriplegia is infuriating

to a formerly independent person. It is also very expensive

since I must pay for the help I require on a full time



b. Discomfort:


In addition, this dependency, for instance, causes me

great inconvenience. I may be wet, cold, tired or hungry.

However, because of my inability to do things for myself

must wait my turn patiently. Often, people are unable to

assist me immediately and I may, for example, have to wait

an hour before being put to bed or helped up in the morning

or wait thirty minutes to be helped in or out of a car.


c. Cost of Additional Services:


Because of my dependence, I must pay people to do

things for me which I would once have done for myself.

Laundry, ironing, work on one’s hobbies and repairs of my

car are only a few examples.


a. Additional Expense of Social Activities:


Because of my dependence, my social activities have

become more expensive. For instance I enjoy frequent

outings to restaurants much more now than in the past since

this is one social activity I can enjoy from a wheelchair.


e. Additional Expense of Hobbies:


i. Radio


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Dependence has also led me to pursue expensive hobbies

such as HAM radio. This pursuit is ideally suited for me

because I can maintain communications with people without

mobility or letting them know I’m disabled. However modern

equipment suitable for me is over $2000. more than what I

would otherwise use. Such equipment which uses

microprocessor control eliminates numerous knobs which need

to be gripped and twisted to use.


ii. Remote Control:


Similarly remote control stereo equipment and TV is

more costly. Such equipment is useful for me because of my

severely limited mobility particularly when on a bed.


iii. Word Processing:


Computing, my main interest, is again well suited to my

sedentary condition and paralysed hands. The equipment which

is costly allows me to correct my numerous errors when

typing with one finger and to move text around in a manner

which I cannot accomplish as in the past. For instance, now

I can no longer cut and paste. Since my work depends on

writing the equipment is vitally necessary.


f Insurance and Banking.


Insurance rates are higher for disabled people. Bank

loans are more difficult to obtain.


4.10 Effects of Disability on Social Development:


Much of my satisfaction in life comes from the quality

of my relationships and interaction with other people.

Before my accident I had been fortunate in having the

ability to relate well with my friends and to enjoy the

company of others. I have always been active socially,

particularly enjoying clubs, parties and social outings to

the cinema, theatre, B.B.Q. ‘s, restaurants and beach. My

enjoyment of travel stemmed from the opportunity to meet and

interact with new and interesting people.


The Canadian Rehabilitation Council for the Disabled

Smith, 1981, p. 121 has reported that people tend to put

up mental barriers when they see people with obvious

disabilities. The NSW Board on Discrimination 1979 reports

that societal attitudes set disabled people aside from the

main stream of society and result in poorer quality of life

for them. They report that disabled people are accorded a

minority group status since disabled people are often seen in

terms of a group rather than on the basis of individual

characteristics, what an accurate statement that is, I feel.

I find that all our Australian commercial advertising

and publicity depict beautiful people such as handsome


Page 19


‘spunky’ young men with muscular, tanned bodies. People, I

find, accept the values of beauty, physical health,

independence, and productivity. They always tend to base

their first impressions of other people such as myself on

the degree to which they measure up to these media images.

When they see someone like me who is obviously

disabled, in a wheelchair, dependent, and incontinent they

too often see my disability as my most significant and

outstanding feature. My disability, identified by my

wheelchair and quadriplegic appearance, becomes my all

important, all permeating feature overshadowing all my other

abilities, talents and characteristics. People see me as a

member of a group, as a category of people who they pity and

think as unproductive rather than as myself.


I am finding that people turn away and reject the

thought of being different by being confined in a

wheelchair. In doing so they reject me as a person. Too

often, I find, these first impressions they have of my

disability are very hard to overcome. I am denied social

normalcy by being disqualified from social acceptance. My

handicap is my chief threat to my social interaction.

Perhaps you can understand how hard it is to come to terms

with my disability, to realize that I cannot meet the

cultural values associated with the "body beautiful" image.

Negative attitudes towards my disability often lead to

a display of unease in my presence.


This discomfort they experience is communicated to me

in a number of ways:


a. in face to face interaction people seem to keep more

physical distance.


b. they tend to terminate their conversations sooner, use

stiff, inhibited and awkward terminology and make slips of

the tongue revealing their strain.


c. they don’t look me in the eyes and they smile



d. my disability becomes the exclusive focal point of



e. people don’t know the propriety of approaching some

topics and avoid them e.g. sex


f. Others see ambiguity between my status as a disabled

person and other characteristics, such as my employment.

Comments emerge: "How nice you have something to do. Can you

really drive?"


People’s unease sometimes leads to negative language. I


Page 20


have found that people reduce their expectations and see rue

as an object of pity rather than a human being, use awkward

and patronizing terminology and express attitudes bordering

on charity.


a. Some tend to treat me as a child or mentally

deficient. Even sisters at the Quad Centre make

maternalistic remarks such as "not to take an overdose" when

they distribute tablets.


b. Some see me as unable to make the right decisions or

able to run my own life.


c. Others see me as unrealistic or illogical.

For instance, this scenario is too often repeated. A

waiter approaches my female companion to ask: "What would

your friend like to order." If I am known my companion might

be asked: "flow is Don today? Does he need assistance?" They

ignore me in the process. When they talk to me they say:

"How are you feeling today? You really are looking well. You

Looked so tired the last time I saw you."

Being greeted by this type of conversation everyday

gives me the status of a patient or invalid. It is also

insulting to my masculinity when I am escorting the girl and

paying for the meal.


The point is also made by the story of a quadriplegic

girl who had broken her leg and had it visibly displayed in

a cast. She found people reacted to her differently in her

wheelchair not as a disabled person but as an able bodied

person with a broken leg. People reacted towards her more

positively with less awkwardness and less patronizing



Sociologists suggest that a person’s behaviour is

based on his perception of how other people perceive and act

towards him. They see disabled people as sharing a marginal

status. The disabled person tries to assume the identity of

a normal person which, while desirable, is unacceptable to

non-disabled people. They expect deviant behaviour whereby

the disabled person heightens his handicap to fulfill the

role expected of a disabled person. The validity of this

analysis has become apparent to me since the accident.

These barriers are erected by strangers because of my

wheelchair and emaciated appearance, posture, reduced height

and. self-image. Such reactions by strangers make me

self-conscious and are destructive to my confidence and

relationships with others. The way people respond to me has

tended to make me embarrassed because of the distress I am

causing others, Consequently I am more wary of meeting

strangers. I now prefer the company of close friends and

avoid the types of parties which I enjoyed before my


Page 21




I am also becoming exceptionally self-conscious when in

my wheelchair in crowded public places. I fear the abuse

given when the foot plates of the wheelchair hits the ankles

of people on crowded sidewalks, malls, lifts and stores. I

worry over people stepping onto or tripping over the

wheelchair. Consequently, because of my self-consciousness I

am less frequently visiting public places such as shopping



I find myself adjusting and redefining my values

accepting the views and expectations of other people who

view me as a second class citizen, incapable of running my

own life and interacting socially at their level.

Institutionalization is accelerating the process conferring

on me a self-image of dependency.


I find it difficult now to perceive myself as an equal

citizen and human being.


I fear the process because I know that this new image

of myself rooted in my perception of the actions of others

towards ate is a false one. t is caused by my segregation

with other disabled people and my contact with staff who

have low expectancies.

Symptoms of my acceptance of my marginal status



a tendency not to question or argue with the judgment

of staff.


b a tendency to ask others to do simple jobs for me

although I know I can do them myself.


c a tendency to avoid taking initiatives and to leave

jobs for others.


d a withdrawal from ray formerly active social life.


4.11 Depression:


As a consequence of all the above factors I suffer at

times from depression and frustration, Consultation with

quadriplegic friends indicate that I am typical rather than

unusual in exhibiting such characteristics.


This depression sometimes causes me to face and resolve

crises in my life with self-blame, a discouraged attitude,

lowered interest, passivity and feeling of inadequacy. I

occasionally feel helpless and useless and loose all

optimism about the future. My self-esteem tends to suffer

and I find it more difficult to motivate myself to perform

in a professional manner as is becoming of my position. My


Page 22


Personality is inclined to undergo a change

Towards irritability and short temperedness and I may become accused

of being a grouch". These characteristics stand in marked

contrast to my easy going and happy nature prior to my




The effects of high level quadriplegia have altered my

lifestyle and personal happiness drastically including a

decline in physical activity, leisure time and travel

and fitness, a loss of hobbies, opportunities for

family life and sexual capacity.


5.1 Physical Fitness:


Maintaining my physical fitness was important for me before

the accident. I do not and have never smoked and drink only

moderately. Many of my interests were physically oriented.


a I exercised regularly through jogging, sports and in

Canada ice hockey, Canada’s most popular national game. At

university I engaged in skydiving.


b I owned and rode a motorcycle for six years and toured

I Canada on it. In winter I was also active on snowshoes,

skiing, snow machines and ice fishing.


c I spent four summers employed as a canoeist for the

Ontario government in remote regions of the Canadian

wilderness. During this time I assisted in writing a book

entitled Canoe Routes of Northern Ontario.


d I bicycled through Ireland and Scandinavia in 1974. I

enjoyed cycling and kept fit cycling five kilometres to work

everyday the year prior to my accident.


e Hunting and camping were my hobbies during my first

three years teaching. I spent six months camping while

crossing Asia and camped and used youth hostels regularly in  Australia.


f I swam a great deal and held the Royal Life Saving

Society’s Medallion, Bronze Cross, Award of Merit and

Distinction Awards. I was also a Red Cross Swimming

instructor. I was a member of the Murdoch University SCUBA


Page 23


Club and University of W.A. SCUBA Club.


g Coming to Australia I hiked in the Himalayas outside

Kathmandu for three weeks and through the hill tribes of

Northern Thailand. Immediately prior to my accident I was

bush walking and canoeing with Janet my girl friend of that

time. I was on my way to spend the summer trekking in New

Guinea when I experienced my accident.


h I had also taken up flying and had expended over

$2,000. in obtaining my Australian pilot’s licence.


i I was a keen photographer with considerable experience

in the darkroom developing and printing photographs.

As a result of my accident I am unable to pursue any of

the above interests.


5.2 Loss of Travel Opportunities:


To travel, to meet new people, to see different places

and to experience unusual customs have always been my

ambitions. Regular travel with my parents around North

America and the British Isles as a youth was supplemented by

working on both the East and West coasts of Canada as a

university student and numerous trips through the USA.

Annual trips around the continent and overseas also were

taken in my capacity as a teacher. Not only has Europe been

visited three times but also I have travelled across Asia,

South East Asia, New Zealand and Australia.


As a geography teacher, foreign travel increased my

competence and success in the classroom. It permitted me to

illustrate abstract theoretical statements in textbooks with

concrete and interesting examples from personal experience.

The breadth of my travel experience also provided the

confidence to travel by myself to Australia and to work and

study abroad. I now find myself settled in a city some ten

thousand miles from my nearest relative.


My parents are becoming too elderly to travel from

Canada to Australia. Both my brother and sister have

families which restrict their travel opportunities.

Travel for a quadriplegic is both difficult and costly.

My home town, Belleville, Ontario is twelve thousand

miles distant.


With my previous travel experience and with friends and

family in Canada, I have the motivation and need to visit my

home periodically.


Page 24


5.3 Loss of Family Opportunities


At the time of my injury in December, 1918, I was

deeply in love with Janet  a computer programmer, We

both had common recreational pursuits including travel,

sailing, hiking, camping, canoeing, horse back riding,

swimming and dancing. These pursuits were generally of a

physically active, out of door type.


Janet possessed a University degree, a well paid job

as a computer programmer, and a desire to travel, an

interest which I shared. At the night of the accident I was

on my way to meet Janet’s parents in Melbourne prior to a

trekking trip in New Guinea. At that time, I was planning to

marry Janet.


Following the accident Janet visited me daily during my

eight month stay in hospital. These problems became



a Sexual Incompatibility


Janet’s active sexual drive remained while mine was

reduced. I was unable to achieve satisfactory erections and

required to have my bladder emptied in advance, an

unromantic activity. 1 was incontinent and wet the bed

sheets during the night.


I was unable to take the dominant male position and she

was unsatisfied.


Janet’s unhappiness with our sexual life because of my

quadriplegia led to a growing sense of insecurity and lack

of self-confidence on my part. I no longer enjoyed sexual

relations with Janet because of my loss of all sexual

sensation and for fear of my inability to meet her needs and

her subsequent disappointment and unhappiness.


b Incompatibility of Interests


While before the accident we shared common interests in

travel and physical sports, my accident put these former

interests beyond my reach. For instance, Janet left for a

trip to South America alone eight months after my accident,

a trip which we had planned together before my injury.

Janet no longer had my company for sailing, biking,

swimming and travel. She found herself restless being at

home on the weekends and other than reading had, in fact,

few home-oriented interests.


c Demands of Quadriplegia


These, described already were onerous and led to a lack


Page 25


of tolerance, a quick temper and abusive behaviour on both



Janet also found me too heavy and difficult to move and

commenced to suffer front serious back pain. I was too weak

and immobile to be able to assist myself in moving

adequately. I had to be lifted into and out of her car, onto

and off the bed and to and from my wheelchair.


I blame my accident for turning a pleasant life of two

people together into a tragic and unhappy situation which

led us to go our separate ways. I am still single four years

after my accident.


The quadriplegic condition makes substantial care

essential. The Centre has many residents who are separated

or divorced from their wives because of the inability of one

person to provide this care.


In a subsequent relationship following my romance with

Janet I went out for eighteen months with a sister who had

been trained in the Spinal Unit of Royal Perth

Rehabilitation Hospital. In Sept. 1980 we rented a house

together in Mount Pleasant on the understanding that I would

spend my weekends together with her.

y Christmas, 1981 it was apparent that this

relationship too was not working out for reasons related to

my quadriplegia. My girlfriend informed me that she could not

continue without a normal sexual relationship and commenced

having other men around to the house.


Although a sister by profession she also told me that

she simply was not willing to carry her work home with her

and deal with a wheelchair, perform bowel treatment and

complete the other multitudinous tasks connected with

looking after a quadriplegic.


My daily demands on her led to the termination of the

relationship. She departed with the comment that "under no

circumstances would she ever become involved with a

quadriplegic again."


Recently I have dated a teacher. Our relationship to the

present has been as normal as possible. I have relied on the

specialized services of the Quadriplegic Centre. I have not

used my girlfriend to perform any of the functions of body

care and leave these to nurses and attendants.


I believe that for any relationship to work life must

be normal, free from physical and medical chores. I have

learned that relationships between quadriplegics and spouses

statistically have a high failure rate. They are often not

enduring probably because of overload for the wife.


Page 26


d Loss of Opportunity for Children


Should I marry successfully with adequate support

services, the accident has eliminated my chances of having

my own children. I am very unhappy over this situation as I

had planned before my accident to marry Janet and to raise a



I find that this loss of opportunity to raise a family

is deeply distressing.


e Difficulties of a Family


I now am conscious of these problems that raising a

family now entails:


a my sexual impotence and dependence


b the fact that my condition will never improve


c that it I did marry, my wife would become less and

less able to care for me with growing age.


d that if I did marry there will be strong

discrimination against a quadriplegic adopting children,


e that it I did marry and raise a family, that family

would share my handicap as well. They would be:


i. victims of my lack of mobility: how do you take

your children to a movie, beach or picnic area for instance

if the venues are inaccessible.

ii. socially restricted. Surveys of wives of

disabled men have found that they often feel that there are

times when people look at them and are thinking. "What’s

wrong with her? Can’t she get a real man?" Sexual advances

are more often made to these wives.

iii. unable to share in physical activities with

me such as occurs in normal families. How does one play with

children, supervise their swimming etc if one is stuck in a


iv. unable to gain my assistance in doing repairs


v. compelled constantly to assist me which may be

a real source of conflict. As Phil ##### notes in the

West Australian, Aug. 22: "For the handicapped person there

can be some feeling of being cowardly in accepting a

relationship in which one takes so much more than one can

give. Their spouses have to be extraordinarily loving,

caring people."




Page 27


The reduction of my chances for continuing study has

also reduced my chances of continued employment or



In a research position which requires continual up to

date expertise in a rapidly changing field, ongoing study on

a part time basis is necessary for security of tenure.

Rather than continuing in my former position on a full time

basis with the prospects of moving into a lecturer’s

position in a university, my job prospects are now very



a I can no longer move around to contact people easily.

Since my job involves contacting people regularly, my

efficiency is somewhat reduced.


b I am classified as temporary and require only a

week’s notice prior to termination.


c My position is based on Commonwealth Schools’

Commission funding which fluctuates in amount and has been

decreasing in real terms each year.  


d Funding is based as well on an annual decision by a

committee to allocate Priority funds for the employment of a

Coordinator. There is no certainty that the Committee will

continue to give this project priority.


e I doubt that I could go back to being a classroom

teacher because of:


i. My medical and physical condition and my total

dependence on aid.

ii. My situation and a decrease in my ability to

maintain discipline due to immobility. As one paraplegic

teacher has commented: "it is much more difficult to control

a class when you sit down. You lose prestige and authority,

particularly in a class like year 8’s."

iii. My weak voice due to paralysis of my

intercostals chest muscles.

iv. My inability to use a blackboard.

v. Current attitudes held towards the disabled,

particularly by parents towards disabled teachers.


Opportunities for employment in curriculum and

research branches depend on having highly specific skills,

are highly competitive and sought after and depend on

vacancies and budget allowances. Recent cuts in the

education budget have reduced job possibilities.


Page 28


g Promotion possibilities are also reduced. A recent

Parliamentary Commission on Discrimination N.S.W. 1979, pp.

43 &44 found that employed handicapped people often

experienced difficulties in matters of promotion. They

reach a certain level and are unable to go beyond it even

though their experience and capabilities give them

justifiably different expectations.


h Alternative employment positions such as I once held

as a university student are now closed. I am unable to take

work involving physical labour, have lost my skills as a

rapid touch typist, am unable to act as a swimming or SCUBA

diving instructor, lifeguard etc. The range of employment

positions now open to me is very small and I have lost the

freedom of moving from position to position to enable me to



1 Sir George Bedbrook estimates that I will lose three

weeks a year of working time due to hospitalisation. This

may be an underestimate as I grow older.


j It is unlikely that I will be able to work until 65

as an able person does simply because of the more numerous

difficulties, increased fatigue and reduced mobility and

strength caused by quadriplegia.


Atrophy of muscles and increased prominence of bones

enhances the possibilities over time of pressure and

hospitalisation. Muscles stiffen and weight increases

reducing a presently marginal strength to weight ratio.

Mobility and motivation decrease over time while physical

ailments increase.


A look at any quadriplegic who has spent fifteen years

in a chair shows the profile of a person who appears at

least thirty years older. A review of their lifestyle at the

Quadriplegic Centre shows the patterns of old men, with

considerable rest periods in the afternoon and early

retirement to bed in the evenings.


On the basis of these people I would consider myself

fortunate to have fifteen working years ahead of me.

I am still proficient in my field of curriculum

research. However, I submit that compensation may be

considered on the following basis:


i. part, as opposed to full time work.

ii. loss of possible promotional opportunities and

salary increases.

iii. uncertainty of employment.


Page 29


iv. the unsuitability of my former career as a

classroom teacher in my present quadriplegic condition.

v. Total loss of salary for one full year.

vi. loss of any possibility of alternative types of


vii. reduction of employment expectations to around

fifteen years




Educational research has pointed to a high correlation

between an academic home environment, and success in school,

and in the workforce. U this is the case then my family

background was predictive of a successful future.

Both my parents have university degrees and held

professional positions; my father as an electrical engineer

and my mother as a high school teacher. Academic support for

the children was high with the consequence that our family

was well educated.


My sister has two degrees and is a high school teacher.

My brother holds both a Masters Degree in Electrical

Engineering and a Medical Degree. I myself have obtained

Masters Degrees in Arts and Education.


My parents also travelled extensively with the family

overseas and throughout North America. They provided the

children with a broad experiental background. Literacy and

numeracy was regarded highly in the family and enquiry and

study skills were constantly being promoted. Travel assisted

and this interest in travel is still shared by all the

family as indicated by my parent’s and brother’s recent trip

from Canada to Australia. These early parental influences

have exerted considerable direction in my life.


My life had been highly goal-directed towards

achievements in my career. To ensure my success and rapid

promotion as a high school teacher I completed an Honours

B.A. as opposed to a general B.A. to ensure preeminence in a

competitive field, I then completed a Master of Arts degree

before graduating in the customary Bachelor of Education



After arriving and teaching in Australia for a year

commenced to compare my overseas teaching experience and

qualifications with those held locally. Thinking that I

could contribute in a more productive way to Australian

education I enrolled in a Masters of Education programme at

Murdoch University. In September of 1977 I ob.i1,ed the

position of Curriculum Coordinator at f1wnitcn Senior High



Page 30


The proximity of the high school to the university was

advantageous. My field of research at University, curriculum

development, fitted well with the practical curriculum that

I was doing at the high school. It was apparent that

research at university was being complemented by an

application of that research in the school. I was in art

ideal position to pursue a doctorate degree in education.

This I resolved upon doing. I had completed my Masters

Degree at Murdoch University in December, 1978, the date of

my accident. My marks had been excellent, eighty percent

were A grades. I had been accepted into the Masters of

Philosophy, a direct usually three month preliminary to a

Ph 0 programme.


Had the accident not occurred I have every confidence

that I would now be graduating with a doctorate degree in



Since my position at Hamilton Senior High School was a

temporary one with an estimated five years life span, by

1983 I expected to have a lecturer’s position in education

within a university or College of Advanced Education. I am

handicapped now in following these plans.


a I require lifting into and out of a car and must

organize to have friends meet me at the point of arrival and

assist me at departure.


b I need assistance in being pushed in my wheelchair

up the slightest incline and over any distance.


c I cannot use my hands to manipulate books or

magazines easily and require assistance in getting them from

library shelves.


d My handwriting is slow and requires a special type

of pen. I have lost my ability to type, a skill in which I

was once highly proficient.


e Conditions at the Quadriplegic Centre do not

encourage study because of:


1 high noise level of TV’s

ii no quiet study location

iii lack of stimulating companionship

iv Medical conditions make study difficult due to:

v discomfort of the wheelchair sitting position

for any long period of time

vi possible medical complications such as


Page 31


pressure sores

vii I tire easily


Part time study by quadriplegics is much slower

than full time study of a non disabled person and would take

perhaps twice to three times longer, perhaps eight years to

complete a doctorate degree as compared with three or four.

Geoff Lysle, a quadriplegic currently engaged in

university study, in a letter to me, comments: "quadriplegia

forces the individual into an either/or situation between

further academic qualifications and current employment.

Unlike an able bodied person a quadriplegic lacks the time

and energy to sustain both simultaneously. Furthermore, the

time scale involved in studying followed by employment is

also mitigated against by the reduced optimal functional

lifespan of the quadriplegic."




I am presently a resident of the Quadriplegic Centre in

Shenton Park. I am unhappy with institutional living from

many points of view. These include segregation from society

and a tendency for many inmates to demonstrate a

corresponding absorption of a negative self-image, and

regression into a sense of dependence and powerlessness.

They have succumbed to their disability in the sense that

many emphasise what they have lost rather than those areas

in which they can still participate. Low self-esteem makes

continuation of a regular life very difficult for them with

a corresponding negative effect on me.


Matrons of institutional homes often publicly report on

the unfortunate effects of such confinement on the lives of

their patients.


Roger 3. Deakin Laurie, 1980, who had managed a

Cheshire Home for Quadriplegics in England and who is now

working with the Spastic Society, describes the unfortunate

effects of institutions on inmates’ independence. I support

his sentiments.


1 hope one day residential facilities will not be needed

because people should not be segregated. On the other hand,

some of the present residents have become so

institutionalised that they trust be provided for. The sad

thing is that younger people are coming in and becoming



Rosemary Dawson-Shepherd, a 3evre1y disabled person,

in a study of fourteen residential care facilities in the

London area entitled Choice Of care. has also noticed an


Page 32


observation I have made: "No one lives in residential care

without their life being made public, physically and

emotionally." She concluded that some form of residential

care will, continue as long as disabled people have so few

choices about their life styles. But she strongly advocated

that disabled people should be given freedom to live

independently if they so desire.


Peer Reerslev, a C-S Quadriplegic and Director of the

Danish Paraplegic Association, has noted another effect of

institutionalization: its permanency. "Once you get into a

nursing home, it is not easy to get out."


It is not surprising that a recent film on the disabled

is entitled "Captives of Care." This frightening truth is

reiterated by many studies Higgins, 1963 which suggest

that institutions are ‘jails without walls."

Miller and Gwynne 1974 suggest that the intake of

disabled persons into Centres consists of people who have

been excluded from wider society and for whom there is

generally no going back. They state that "the institutions

impart the socially dead and export the physically dead."

Such stigma attached to institutional living is

readily apparent in Perth. In a letter to the Daily News

June 25, 1982, p. 14 a quadriplegic, Craig Parsons writes:

"quadriplegics who have to live at the Shenton Park "Quad

Centre" could live fulfilling lives at home.... Being a

quadriplegic I can live at home and I am able to express the

thrill I get just looking out of my own window."

I am frequently told by other residents. "I envy you

Don. You have a chance of getting out of here. At least you

get out for the day."


The reasons for such permanency by disabled inmates

becomes apparent through even a shallow reading of modern

sociological literature on the effects of



Goffman 1961 and many others have demonstrated that

institutions often teach patterns of institutional behavior

to the residents which are not intended. These often relate

to "staff objectives", subservience by patients to the power

of the staff who implement objectives which stress rigid

timetabling, block treatment of residents, and

depersonalized treatment.


There is also a behavioural reflection by patients of

the negative views that staff often have towards the

inmates. Such patterns have become readily apparent to me

during my three years of institutionalization.





In "A Life Apart", a pilot study of residential

institutions for the physically handicapped, Miller and

Gwynne 1974 reinforce documentation on the undesirable

effects of institutionalization. They note that the

handicapped must deal with their self-image, dependency and

the attitudes of others.


I would concur with their report that the disabled in

institutions obtain a feeling of isolation and rejection for

a variety of reasons. As a class they often feel that they

are non-contributors to society. Many seem to think of

themselves as non-participants socially. Some disabled

people feel that to be admitted into an institution is to

join "the scrap heap of human rejects". The very fact of

being institutionalised leads many to feel socially rejected

and inadequate.


Dependence is fostered by the institution which

functions to provide physical care. Residents know that

whatever they do the basic necessities will be provided.

Any attempt by residents to exert independence or creativity

tends to be discouraged. I have found that for many staff a

resident is a depersonalized dependent body requiring care.

Often for convenience residents are regarded as more

dependent than they really are. This has the effect of a

self-fulfilling prophecy. The passive, cooperative and

grateful resident appears to be, I have found, the best



There is, for instance, a continual complaint by

occupational therapists at Royal Perth Rehabilitation

Hospital that patients are discharged to the Quad Centre

with certain skills such as dressing and transferring only

to lose them within a few weeks. Similarly, residents from

the Quad Centre who have gone out to live independently

comment on how much they have learned having to do things

for themselves. Some after a Quad Centre stay may be unable

to function outside.


8.1 Personal View:


The nursing facilities of the Quadriplegic Centre are

tremendous for caring for people who are so badly disabled

that they cannot live at home with their wives and loved



Life need not be idle there.


a I have established a computer club at the

Quadriplegic Centre and ant working Lo learn BASIC. The

computer permits manipulation of files easily and I am

researching using Morse Code as an input mode to permit

rapid typing.


b I am also a licensed Amateur Radio Operator


Page 34


VK6DN. I enjoy the hobby and the chance to speak to



c I have also taken an interest in helping other

disadvantaged people by:


i. serving on the Quadriplegic Centre’s Residents’


ii.serving on the Para-Quad Education Committee

iii. being chairman of the Para-Quad Radio Computer



I am doing my best to make my present life busy,

constructive and productive under adverse circumstances.

Nevertheless, my confinement in a large institution for

people in wheelchairs is having severe psychological effects

on my attitudes and self-concept.


8.1.1. Incompatible Companions


a. There are nearly a hundred patients in wheelchairs.

Many are geriatrics.


b. The number of trips made by many residents outside

the centre is very limited. Some do not leave for social

visits for months at a time.


c. Many patients have only limited contact with

non-disabled people other than staff.


d. Some residents are apathetic and unmotivated to use

those capacities which are unaffected by their accident.

They are sometimes inclined to lose some of their autonomy

and decision making abilities and are inclined towards some

passivity in their lifestyle.


e. Most residents held jobs requiring physical skills

prior to their accidents. Very few have formal or tertiary

training. Consequently some residents may be somewhat

psychologically affected by their injuries. Surveys have

shown that many residents have poor self-esteem and feel

that they have little to contribute to society.

It is perhaps for these reasons that listless T.V.

watching, drinking tendencies and prolonged "dozing in the

sun," behaviours are popular recreational forms. Only two

residents in the Centre hold jobs outside the employment of

the Para-Quad Association.


8.1.2. Nutrition


Eating conditions in the Quadriplegic Centre, I feel,


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are undesirable in these ways:


a The crowded noisy cafeteria is an unpleasant

contrast to the quiet informal relaxed atmosphere of a

family dining room.


b The main Quadriplegic Centre meal is lunch which is

saved for me to eat at 5 p.m. since I am at work during

lunch hour. The meal is heated and stored for five or more

hours. Consequently, vegetables are mushy and overcooked.

Meat and potatoes are dried. Generally meals are

unappetising compared with home cooked meals. Meals are low

in fibre because of overcooking and are often high in sodium

and sugar. There is a loss of vitamins due to the poor

cooking processes. Consequently health suffers with a

subsequent need for laxatives, vitamin supplements etc.


c I miss the satisfaction and enjoyment which comes

from cooking for myself or cooking for a friend. I enjoy a

good meal with friends. At the Quadriplegic Centre I tend to

eat too quickly and derive little satisfaction from meals.


d The Quadriplegic Centre serves meals at a set time.

this is restrictive for my movements since I pm dependent on

these meals. If r miss a meal my lack of mobility excludes

visiting a restaurant.


e Companionship at the meal table is boisterous with

a noticeable lack of manners at times. Often the TV is left

on at high volume. As a non-smoker 1 resent the smoking.

Seating is highly territorial so that interaction is always

limited to the same people. Because of their limited

experiences they have little new to say. This is an

unpleasant contrast from the setting to which I was

accustomed before the accident.


8.1.3 Social Stigma:


The name of my residence, Quadriplegic Centre

immediately identifies and pigeon holes my social status

even before I make an appearance. The connotations

associated with the address are a social handicap in my

interaction with people outside the Centre. For instance,

asking a girl to visit the Quadriplegic Centre is a bit like

asking someone to a hospital. My friends do not like to

visit the Quadriplegic Centre regularly and are often

depressed by the residents. Visiting reminds them of old age

homes with the Centre’s uniforms and incapacitated elderly

patients. The social stigma under which I suffer is

reinforced by the drab colour, small size and noisiness of

my room. there is very little room to store or possess many

personal belongings.


8.1.4 Deprivation of Privacy


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I am unhappy at the nearly total lack of privacy.

When friends do visit, there is seldom a quiet place to

entertain them. A recent article in a magazine for the

disabled Quad Wangle, Sept., 1981 is entitled Becoming an

Institutionalised Visitor, or How to Become Friendly With a

Resident of an Institution and Survive.


This article which describes visits to the Quadriplegic

Centre advises visitors to reduce expectations of privacy

and to be aware of numerous institutional guidelines



Not to stay at mealtimes unless you bring a meal for

the resident

Not to phone at 12or 5 P.M.

Not to talk about personal things over the phone

because of the lack of privacy at the other end

And so the list continues.


Certainly, it is hard enough even to receive visitors.

It is unfortunate that there is no opportunity to entertain

and be intimate with female friends. One’s life is public to



8.1.5. Effects:


Prolonged confinement in the Quadriplegic Centre is

having these effects on me.


a Unhappiness at my sense of dependence on the staff

and frustration at not being able to do things myself.


b Depression at my increased isolation from the

outside world.


c Concern over my growing lack of self-confidence in

my relations with people and a sense of withdrawal caused by

reduced self-concept and poor body image.


d I am suffering from growing feelings of apathy

stemming from;


i. the above factors

ii. lack of exposure to stimulating outside


iii. a sense of ennui from repeated contact with a

small group of disabled people.




Page 37


Because the restrictions inherent in present

institutional accommodation are oppressive and not conducive

to undertaking my own lifestyle I am seeking freedom of

choice in my accommodation. I believe that a maximum of my

potential development and effectiveness will only be

realized by living in surroundings of my own choosing with

full social integration and adequate home support services.

The emphases of such accommodation will be on my freedom,

independence, individuality, personalised life experiences

and self-determination.


I hope that the Court will share my view that everyone

is entitled to his own home and a surrounding environment

that supports his disability, goals, values and lifestyle.

Some countries perceive total rehabilitation into the

community as a worthy goal and there has been attempts to

try to move away from what has been termed "institutional



For instance, I applaud the United Nations resolution,

"The Declaration of Rights of Disabled People which affirms

in part that disabled people have the right to enjoy a

decent life, as normal and full as possible and are entitled

to measures to make them as self-reliant as possible. A

strong case was made, which I support, that disability

should not mean the loss of fundamental civil liberties. All

disabled should have the right to come and go freely,

privacy behind one’s own door, to set one’s own timetable

and to entertain friends.


I also am impressed by a Bill of Rights advocated for

the Handicapped in the State of New South Wales. It asserts

that handicapped people shall have the right to live in

their own homes as individuals maintained through adequate

provisions of home support services. The document adds:

The handicapped person shall not be confined to

institutions simply because they ... have to use a

wheelchair. People do not necessarily have to be segregated

from the community. Isolation should be a matter of

personal choice.


I note with hope that political moves in Australia now

seem to promise disabled people freedom of choice in their

living arrangements.


In 1980 Senator Don Grimes Shadow Minister of Social

Security released a discussion paper entitled Physically

Disabled People of Australia. This document promises

disabled people the right of choice concerning living

arrangements through provision of an attendant income, and

mobility allowance.


Page 38


My requirements are expressed clearly by The Prime

Minister, The Right Honourable Malcom Fraser in an address

entitled ‘the Governments Commitment To The Disabled’ in



Today, we recognise that society has thought too

long only of people’s disabilities, not of their

potential for all levels of skills: both society

and disabled people have lost as a result.

Disabled people need the opportunity, where they

so wish, to live independently or with support in

the community, and have the maximum freedom of

choice over their style of living, regardless of

where they may live.


The Prime Minister also said:


"I believe that when a disabled person is prepared to live

independently and wants to do so, that ought to be



I believe that the full rehabilitation of my remaining

physical skills and retention of my personality can best

be achieved by my own provision and self direction of the

services I need. Self-directing and self-determining are the

optimal methods of receiving services in the way required by

me to live independently.


9.1 Defining Independent Living


The philosophy of independent living is defined by

Dejong 1978 as having control over one’s life in the least

restrictive circumstances and in the settings of one’s

choice. This control is based on the choice of acceptable

options that minimise reliance on others in making decisions

and in performing everyday activities. This control in my

opinion should include:


a. managing one’s affairs,


b. participating in day-to-day life in the community,


c. fulfilling a range of social roles,


d. being aware of problems caused by disability,

realistically judging difficulties, accepting them and

making decisions that lead to self-determination,


e. and the minimisation of physical or psychological

dependence upon others.


Obvious effects of this situation, I feel, would



Page 39


a. increased motivation to integrate into society and

to concentrate on what is possible rather than what is lost.


b. an increased range of non-institutionalised friends

including female companions: --an increased likelihood of



c. Exposure to more models with similarities in

background and disability which demonstrate positive

attitudes and the possibilities yet available.


d. increased self-esteem concerning my worth to myself,

friends, employment and generally.


e. improved attitudes generally. I.E. a greater sense

of satisfaction and happiness.


f. a greater willingness to make decisions and assume



g. a growing expertise in undertaking self-care.


As Frieden 1977, p. 55 has found: "given an adequate

supportive environment and certain adaptative skills, most

severely disabled individuals who wish to live independently

will certainly be able to do so."





9.2.1 Housing:


My preference is a single dwelling with large bedrooms,

all suitable for wheelchairs and one usual sized bedroom

for staff.


The home must compensate for my functional difficulties

by reducing or eliminating the impediments which prevent me

from achieving my goals. Modifications of the house would



a. a wheelchair accessible toilet and shower and

modifications to toilet and shower.


b. wheelchair access in and through the house i.e.

concrete ramps, brick pathway around house etc.


c. modifications to doors and windows to make them

appropriate to a quadriplegic.


d. modification of kitchen to make it accessible and

instillation of a microwave oven.


e. a large garage with radio controlled door


f. provision of insulation, heating and cooling


Page 40


throughout the house


g. provision of an electric bed with lift.


h. provision of an intercom system.


I. suitable floor material e.g. cork for a wheelchair


j. Additional Support Services


i. Gardener, lawn cutting on a monthly basis.

ii. A telephone is an essential item for disabled

people living alone especially since I could be in *a

position in which a telephone was the only method of calling

for help.

iii. Household Maintenance: An occasional handyman

around the house to undertake repairs is envisaged. Duties

would include painting etc.


9.2.2 Personal Care:


a. Attendants: Wages


There is no industrial union of workers whose

constitution contemplates coverage of "Personal Care

Attendants" working for an individual in private dwellings

or dwellings not registered as hostels, nursing homes or



This means that there is no industrial award or any

legal minimum wages and conditions for people so employed.

However, any person would be employed on a contractual

basis, verbally or written, which could be enforced by law.

Wages would appear to vary between that of a part time

Nursing Assistant employed on an hourly rate three hours a

day, seven days a week to that of a house keeper employed

sixteen hours a day seven days a week.


However consideration must be given to Frieden and

Frieden 1980, p. 9 who state: "In addition to making it

difficult to find people who want to be attendants, ... low

salaries lead to a great deal of turnover".

Job descriptions may be broken into two categories: for

nursing aid and for an Attendant housekeeper.


Nursing Aid:


Dispensing medication

Changing urinary devices


Putting on leg pressure stockings


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Positioning in wheelchair

Bowel treatment

Assistance onto and off commode



Cleaning urinary devices


Assistance in and out of car

Preparation of meals

Maintenance of house

Personal assistance around house

Laundry etc

Assistance with turning during course of night and

positioning in bed


I envisage using part time Nursing Care Attendants each

morning and one live in housekeeper for evening duties. I am

reliant on Sir George Bedbrook’s estimate for an opinion on

the hours required..


9.3 Transport:


9.3.1 Goals re Transport:


A major problem for a quadriplegic living independently

and engaged in employment is transport. Provision of a van

modified to achieve freedom of movement for me would achieve

these goals:


a. provide freedom of mobility without the constant need for

assistance at the point of arrival or departure.


b. permit university studies and attendance at meetings

following working hours by permitting use of an electric



c. enhance my psychological well being by generating

feelings of freedom and independence.


9.3.2 Aids Available:


Within the U.S. a number of firms specialise in the

modifications of vans for the disabled. These vans permit

quadriplegics to load themselves and to drive from their

wheelchairs without aid from anyone.


a. doors open and close electrically.


b. The wheelchair lift descends, lifts and folds away under

quadriplegic control.


c. The quadriplegic is able to drive directly from his

electric wheelchair.


Page 42


d. The quadriplegic is able to leave and lock the van

independently upon arrival.


9.3.3. Transport Costs:


J. W. Boltons, Motor Body Builders, Belmont, builders

of the Quadriplegic Centre’s van bodies, were requested to

research the costs of achieving my transport goals in West

Australia. Their report, dated 24 Nov., 1980, stated:

In assessing the feasibility in cost and design

for the manufacture and supply of a mobile van in

W.A. capable of operational performance as

specified by you, please note the following:

From my overseas inquiries, Handi-Wagons Inc., of

Louisiana! USA would appear to be the most

economical efficient and operational van available

in the market today, and therefore it would appear

logical that this American manufactured import

must be considered.


Most of the attachments necessary to maintain the

mobility of the quadriplegic are American

manufactured and consequently ideally suited for

an American manufactured vehicle i.e. Ford,

Chev. ...


As an alternative to a fully imported van the cost

of local manufacture would probably be prohibitive

in comparison since the only cost saving in the

local manufacture would be freight and import

duties $A3,000.OO, a cost that I can assure you

would be consumed in labour costs for modification

of Australian made Ford vehicles.


To conclude, I would suggest that you import a

vehicle from the USA as this would be a cheaper

form of transport as opposed to local manufacture

of same.


These figures overlook a 35% customs duty which I have been

informed that I must pay.


9.4 Aids:


9.4.1 Microprocessor:


a.    Overview:


One of the major problems I experience is communicating

in writing, utilising files and processing data. These

functions were attributes of my professional position before

my accident and I still am called upon to perform these


Page 43


functions now.


A microprocessor would enable me to type, store,

process and recall information. The instrument allows for a

visual display which may be corrected. Furthermore, it

allows for the analysis of data in a way which is well

within my physical constraints and offers the key for a

return of my efficiency in my profession.


b. Uses:


My employment as a Curriculum Coordinator is to assist

disadvantaged schools to improve the attitudes,

self-concepts and skills of students who come from migrant

and working class backgrounds.

This is done through implementing an educational

management support scheme. Components of this scheme



a. assisting schools to derive and validate their



b. performing surveys to ascertain the gap between

goals and their implementation in classrooms.


i. measuring student performance

ii. comparing performance with standards


c. processing the information and feeding back reports

to teachers on areas of need and possible remedial actions.

I handled the position without the aid of a computer

before my accident.


Now I am handicapped by poor mobility and poor writing

skills resulting from my paralysis.

Use of a microprocessor for data processing will

overcome my awkwardness with files while typing would be

more easily accomplished through a word processing system.

Survey data could be manipulated more easily and

provide me with a tool for a more efficient approach to

curriculum planning.


In a letter to me Dr. Ron Hartley, Head, Computing

Centre at WAIT wrote:


I have been to see Mr. Pugh and spent some time

evaluating his needs for a computer system.... In

the short term the system will be of considerable

use to Mr. Pugh in his employment. I can see him

making use of it to mark tests, to keep and


Page 44


analyze records and to produce letters and

documents with a minimum of typing effort. I

regard this last use, the increase in his ability

to communicate as the most significant.

One breakthrough that has been made already is the

discovery of some new equipment which will enable

him to use morse code as an alternative to typing

for input to the system. In his case that will

probably be faster than typing because he is

experienced as radio operator in morse code....

There will be considerable motivation and

satisfaction in learning to program, in using

computer programs for storing and updating files

and records and in conducting and processing



Here at the WAIT Computing Centre we often have to

develop computing systems and evaluate them for

particular applications. We have made a

comparative study of three micro-computer systems

that seem appropriate to this situation, and would

recommend the Cromenco Z2D configuration....


9.5 Medically Associated Costs:


These have been listed in the statement of damages and

will not be referred to here.




To conclude I have tried to present to the court the

facts as related to my quadriplegia and its effects on my

life in as honest, unemotional and straight forward a manner

as possible.


The accident and its effects, paralysis from the

shoulders down, is probably as severe an injury as I can

imagine suffering. Only the miracles of modern medicine are

responsible for my presence here today. I am grateful to my

doctor for his expertise and to society for shouldering the

medical expense. I am happy to still be alive, healthy and



The loss of muscular control, bladder and bowel

control, loss of sensation, and change in body image have

all caused substantial adjustment problems however.

Adjustment problems have also been caused by a drastic

reduction in my mobility, an inability to use many

appliances due paralysis of my hands, a loss of sexual

function, difficulties with transport, and constraints on my

time. The injury has decreased my personal comfort through

chronic pain, increased fatigue, incontinence, bowel


Page 45


accidents, spasm, intolerance to temperature extremes, and

poor balance. I have become highly dependent to my

discomfort and face additional expenses as a result.

My social life has been adversely affected by

institutionalization and by the high visibility of my

wheelchair existence which labels me as a member of a

generally unproductive minority. This has affected me

psychologically in terms of depression and periods of



have suffered substantial loss in terms of physical

fitness and loss of hobbies of an active nature including

bicycling, diving, flying and camping. I have lost travel

opportunities and opportunities to establish and maintain

normal family life.


Although still employed, my employment now is part as

opposed to full time and is insecure. I have lost my

original livelihood, teaching and now stand a reduced chance

of alternative employment or promotion. Plans for future

study or transfer to a university post are no longer viable.

As an institutionalised person I suffer some

incompatible and unmotivated companions, cafeteria cooking,

deprivation of privacy and social stigma which are

having a negative effect on my sense of well being.

I am aware that attitudes towards the disabled are

undergoing transition. At one time disabled people fought

for the right to survival. Today, they have gained the right

to dependency. I humbly beg for the right to independence.

I am not asking for a handout but rather a hand up so

that I can build for myself a life of independent choice and



Through an independent living plan with support my

happiness, productivity and participation in society will be

facilitated. By granting control over my life with choice

of acceptable options that minimise reliance on others,

will regain dignity and self respect and be motivated to

make decisions, and take responsibility for them in a way

that strengthens independence.


It is my firm resolution to manage my own affairs,

participate in the community, fulfill a range of social

roles, and make decisions that lead to self-determination

and the minimisation of physical or psychological dependence

upon others. Independent living will allow me to more fully

develop as a person than could ever be possible in my

current institutional setting.


Choosing a Solicitor


It is very important to choose solicitor

who will be able to expedite a

satisfactory claim on your behalf. Use

the following check list:


My solicitor needs to be...



experienced with my type of



experienced with the insurance

claims applicable to my case


recommended by other satisfied

former clients from comparable



willing to visit me promptly when I

am confined in hospital or at home


comfortable and communicative

when dealing with disabled people

Personal injuries is a specialised field of

litigation. Because it can be difficult

and expensive to change later, you

need to engage a specialised and

experienced legal practitioner at the





Accident litigation is a specialised

specialising and experienced

litigation. Interview two or

the one with whom you are



A. Experience:


* How many MVIT compensation

cases related to spinal chord injuries

have you handled?

* How familiar are you with

symptoms of paraplegia and

quadriplegia? What are they?

* Have you ever prepared a list of

required by a paraplegic or quadriplegic. What items would

include on this list?


B. Ability:


* Could you provide the name

compensation client who could

contact for a recommendation.

* What was the amount of

largest settlement? For whom?


Evaluating Your Solicitor


If you already have a solicitor representing your needs, you can evaluate

the service you receive by this additional brief check list:

My solicitor should be



easily contacted by phone so I can

discuss matters directly


prompt when replying to my letters


providing specific answers to my



explaining matters to me fully and in

a manner I can readily understand


My solicitor has


* explained the overall sequence of

steps necessary for the settlement

of my case

* detail my entitlements from the time

of injury through to the settlement


advised me promptly in writing of

any developments in my case


continued to impress me with

regard to competence and a professional manner


Further Information


Obtain A Legal Resource Book from

your Social Worker to gain an explanation of how compensation cases are



Contact the following for further information on solicitors:



Your Social Worker


Neil Roberts, Plaintiff, West Australian Law Society



Don Pugh and Geoff Lysle: two

quadriplegic professionals who specialise in assisting spinal injured

people with their compensation cases.

They are willing to assist you with your

interview and choice of a solicitor.

Contact them on:

384 9043